Brought to you by PearlPoint Cancer Support
Download at MyPearlPoint.org
© 2014 PearlPoint Cancer Support. All rights reserved.
Everything you need to know to create a more
confident cancer journey.

Colorectal
Cancer
Handbook

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Table of Contents

Introduction .............................................................................................................................. 6
About The Colorectal Cancer Handbook ................................................................................. 6
My Nurse Navigator ................................................................................................................ 7
Talking About Colorectal Cancer ............................................................................................ 8
With Your Healthcare Team ............................................................................................ 8
With Your Caregiver ........................................................................................................ 9
With Your Children .......................................................................................................... 9
With Family and Friends ............................................................................................... 10

Learn About Your Cancer Diagnosis .................................................................................... 11
Understanding Colorectal Cancer ......................................................................................... 11
What is Colorectal Cancer? ............................................................................................... 11
The Diagnosis .................................................................................................................... 12
Understanding Your Pathology Report .............................................................................. 14
Stages of Colorectal Cancer .............................................................................................. 16
How Colorectal Cancer Spreads ....................................................................................... 17
Finding An Oncologist and Treatment Center .................................................................... 18
Specific Questions To Ask Your Doctor ............................................................................... 19

Treatment Options ................................................................................................................. 20
Surgical Treatments .............................................................................................................. 20
Colorectal Resection ............................................................................................................. 21
Chemotherapy ...................................................................................................................... 22
Radiation Therapy ................................................................................................................. 25
Biologic Therapy ................................................................................................................... 26
Ostomy Basics Overview ...................................................................................................... 27
Questions For Your Healthcare Team................................................................................... 28

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Clinical Trials .......................................................................................................................... 30
All About Cancer Research ................................................................................................... 30
Why Should I Consider a Clinical Trial .................................................................................. 32
How To Talk to Your Doctor About the Latest Cancer Research .......................................... 34

Side Effect Management ........................................................................................................ 36
Change in Taste and Smell ................................................................................................... 36
“Chemo Brain” (Cognitive Issues) ......................................................................................... 37
Constipation .......................................................................................................................... 39
Diarrhea ................................................................................................................................ 40
Difficulty Swallowing.............................................................................................................. 41
Dry, Itchy Skin ....................................................................................................................... 42
Dry Mouth ............................................................................................................................. 44
Fatigue .................................................................................................................................. 45
Feeling Full Quickly ............................................................................................................... 46
Gas and Bloating .................................................................................................................. 47
Insomnia and Difficulty Sleeping ........................................................................................... 47
Lactose Intolerance ............................................................................................................... 50
Loss of Appetite .................................................................................................................... 51
Nausea .................................................................................................................................. 52
Pain ....................................................................................................................................... 54
Reflux, Heartburn, and GERD ............................................................................................... 57
Sexual Side Effects ............................................................................................................... 58
Female Sexual Side Effects........................................................................................... 58
Male Sexual Side Effects ............................................................................................... 62
Sore Mouth, Throat, and Tongue .......................................................................................... 66
Weight Gain .......................................................................................................................... 68
Weight Loss .......................................................................................................................... 69

Nutrition .................................................................................................................................. 71

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I Have Colorectal Cancer. What Should I Eat? ..................................................................... 71
Colorectal Surgery Nutrition Guidelines ................................................................................ 73
Soft Foods Chart ................................................................................................................... 74
Low-Residue Sample Menus ................................................................................................ 75
Food Safety ........................................................................................................................... 79
Must Have Grocery List ......................................................................................................... 82
Nutrition Self-Assessment Screening Tool ............................................................................ 85

Practical Concerns ................................................................................................................. 86
Financial Concerns and Cancer ............................................................................................ 86
10 Financial Assistance Tips for Cancer Patients ................................................................. 88
Managing My Health Insurance ............................................................................................ 89
The Basics of Medicare ......................................................................................................... 90
I Am Uninsured. What Are My Options? ............................................................................... 91
Finding Transportation .......................................................................................................... 93
Finding Lodging .................................................................................................................... 95
What Do I Need To Know About Social Security Disability Benefits and Cancer? ................ 95
Advanced Directives ............................................................................................................. 96
Palliative and Hospice Care .................................................................................................. 97
Emotional Support Programs ................................................................................................ 98

Survivorship ......................................................................................................................... 100
Screening Recommendations and Follow-Up Care ............................................................ 100
Survivorship Nutrition .......................................................................................................... 101
Fear of Recurrence ............................................................................................................. 103
Immunizations for Cancer Survivors ................................................................................... 105
Smoking Cessation ............................................................................................................. 107

Worksheets ........................................................................................................................... 110
My Diagnosis ...................................................................................................................... 111
Questions for Your Healthcare Team .................................................................................. 113

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My Medical History .............................................................................................................. 115
Immunization Record .......................................................................................................... 121
Appointment Notes ............................................................................................................. 122
My Healthcare Team Contact List ....................................................................................... 123
Treatments and Side Effects Log ........................................................................................ 126
Laboratory Flow Sheet ........................................................................................................ 129
Budgeting Worksheets ........................................................................................................ 132
Calendars ............................................................................................................................ 135

Additional Resources .......................................................................................................... 138




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Welcome to the Colorectal Cancer Handbook presented by PearlPoint Cancer Support.


About The Colorectal Cancer Handbook
Having just been diagnosed with colorectal cancer, you probably have a lot of questions. The
Colorectal Cancer Handbook from PearlPoint Cancer Support contains everything you need to
know to more confidently manage your cancer journey from diagnosis through treatment and
survivorship. The Handbook can be your guide.
With the internet and search engines, it’s easy to find information about any colorectal cancer
topic, but not all of it is reliable and trustworthy. But don’t worry! PearlPoint’s Colorectal Cancer
Handbook is a reliable source of information. All of the content in the Colorectal Cancer
Handbook has been reviewed and approved by medical professionals across the U.S. who
participate on PearlPoint’s Scientific Advisory Team.
Using the Handbook, you will first learn how to talk
about cancer with your healthcare team, family, and
friends. As a cancer patient, being able to speak
openly and honestly with your healthcare team is
important. Communication with your caregiver and
loved ones is important as well. You are not alone in
your cancer journey.
Next, you will learn about colorectal cancer and the
available treatment options. No two cancer
diagnoses are the same. The best treatment for you may not be the best treatment for another
patient. Use the information in the Handbook to talk with your healthcare team about your
options to create the best treatment plan for you.
Cancer and cancer treatments cause side effects, but most side effects are manageable.
Know what to expect. Different treatments have different side effects, and people may respond
to treatment in unique ways. The Handbook will walk you through all the possible side effects
and tips for managing them.
Nutrition is also a big part of any cancer patient’s journey and a large part of the Handbook.
Proper nutrition during your cancer treatment can help you feel better, maintain your strength,
and speed your recovery. After treatment, good nutrition will continue to be an active part of
your life in survivorship.
Introduction

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As you likely may imagine, a cancer diagnosis brings with it many practical life concerns—
health insurance, finances, transportation, advanced directives. The Handbook contains
information and content that will help you learn to manage the practical concerns of cancer
during your treatment. But even when treatment ends, the cancer journey is not over. During
survivorship, there are many things you can do to promote wellness and help you readjust to
life after cancer. The Handbook will provide help and information.
We hope you find the Handbook to be a valuable, frequently consulted tool as you manage
your cancer journey. We encourage you to make it your own! Ask your nurse navigator or
another member of your healthcare team to highlight the sections that most apply to your
specific diagnosis and treatment plan. Use the worksheets in the back to keep track of all your
information such as medical history and appointments. And finally, never hesitate to talk with
your healthcare team— frequently, proactively, and openly.


Nurse Navigator
What does a nurse navigator do?
Nurse navigators work directly with cancer patients to help guide them through their cancer
care journey. Nurse navigators serve as a constant point of contact for patients to coordinate
care, answer questions, and provide resources. Nurse navigators usually specialize in a
certain type of cancer to help patients with their specific needs.
As a cancer patient, your healthcare team may include a large number of people including:
 A medical oncologist
 A radiation oncologist
 Surgeon
 Pharmacist
 Dietitian
 Physical therapist
 Other healthcare professionals
 Your caregiver, family, and friends
Your nurse navigator will work closely with every member of your healthcare team to keep the
lines of communication open.
Nurse navigators understand the medical, practical, and emotional needs of cancer patients. If
you have questions about treatment, medications, appointments, or anything else related to
your cancer journey, start by asking your nurse navigator.
Who is my nurse navigator, and how do I contact him or her?

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My Nurse Navigator
Name

Phone Number

Email



Talking About Colorectal Cancer
With Your Healthcare Team
When going through cancer treatment, your healthcare team is very important. Your healthcare
team may include your oncologists, surgeon, nurse navigator, a dietitian, a social worker, or
other medical professionals. Every member plays an important role. Use the tips below for
talking with your healthcare team:
 Establish your main point of contact.
o Your main point of contact will probably be a nurse navigator, but it may
be another member of your healthcare team. Who should you contact first
with questions?
 You need to always be open and honest with your healthcare team about your
physical and emotional well-being.
 Do not be afraid to ask questions.
o Cancer is usually not a medical emergency. There is time to ask your
healthcare team any questions you may have, and to consider your
treatment options.
 Write your questions down before your appointments. Take a pen and paper to
write down the answers. You can use the “Appointment Notes” worksheet at the
back of the Handbook.
 Before beginning treatment, ask your healthcare team the following:
o What are all my treatment options?
o What are the long term and short term side effects of treatment, and how
can I manage them?
o Will my fertility or ability to have children be affected?
o Am I eligible for clinical trials?
o For more questions to ask your healthcare team, read “Questions for Your
Healthcare Team” in this Handbook.

If you develop any new problems or symptoms during treatment, tell your
healthcare team immediately. You are not complaining. This is valuable
information for your doctors.

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 Do not change your diet, start an exercise program, or take any new
medications, including vitamins and supplements, during treatment without
talking to your healthcare team first.
With Your Caregiver
Your primary caregiver may be with you when you receive your diagnosis. Your primary
caregiver may be your spouse, partner, adult child, parent, or friend. Your primary caregiver is
the person who may come with you to appointments, take care of you after surgery or
treatment, and support you throughout your cancer journey.
 Everyone reacts to the news of cancer differently. You may feel upset, shocked, or
angry. It may take you some time to process the information. Your caregiver may react
the same way you do, or your caregiver may not. Even if your caregiver does not react
the same way you do, it does not mean that he or she does not care deeply.
 Establish your role and your caregiver’s role early. For example, will your caregiver be
the one scheduling most of your appointments, or do you prefer to take an active role?
Find what works best for you and your caregiver.
 Be open and honest with each other about how you both feel. Overly positive attitudes
may hinder honest communication. It’s okay to be upset.
 Encourage your caregiver to take time to care for his or her own physical and emotional
well-being. Being a caregiver comes with its own hardships.

If your primary caregiver is your spouse or partner, your intimate and physical
relationship may change.
With Your Children
Children are very perceptive, no matter their age. While you may wish to protect your children
by not telling them about your diagnosis, even young children may be able to tell that
something is wrong. Not knowing what is wrong may cause them more stress and anxiety.
Here are some tips to talk to your children and teens about your cancer diagnosis:
 Wait until your emotions are under control and decide what to say ahead of time.
 Tell the truth and answer questions honestly. Depending on your children’s ages, it may
not be appropriate to give them all the details, but do be truthful.
 Let them know what to expect. For example, let them know that after surgery you will
need a lot of rest and may need to stay in the hospital. If your chemotherapy may cause
you to lose your hair, let them know. Keep your children in the loop as much as
possible.
 Explain to your children, especially younger children, that they cannot “catch” cancer.
 Let your children know that it is okay to cry or be upset. This may be especially
important for your teens to hear.

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 Tell teachers, babysitters, and others with responsibilities with and around your kids
about your diagnosis in case they see behavior changes you may need to know about.
 Maintain normal schedules as much as possible.
 Let your kids help. Allow them to help with chores, and let them know that their help is
important. Teens may want to take an active caregiver role. Let them do so, at
appropriate levels.
 Look for support groups in your area. Many places offer support groups for children and
teens whose parents have a cancer diagnosis.
 Know when to seek professional help. If your child begins to demonstrate unusual
behavior such as angry outbursts, nightmares, or poor grades in school, ask your
healthcare team for a recommendation for a counselor.
With Family and Friends
You may choose to keep your cancer journey private, or you may choose to share your story
with others. The choice is yours. Remember when family, friends, coworkers, or other
acquaintances ask about your diagnosis, they are genuinely concerned about your well-being.
You can share with them as much or as little information as you like. These suggestions may
help you talk about your diagnosis:
 Decide how much information you want to share before you start telling people about
your diagnosis.

If you choose to keep your journey private, make sure to let people know that you
appreciate their concern, but you hope they respect your privacy.
 Choose someone close to you, like your caregiver, to spread the word about updates
and treatment progress. After a long day of treatment, you may not feel like calling and
texting people, but your friends and family will probably want to know how you are.

If you want to share your story, consider starting an email chain or a Facebook group.
This way you can update everyone with one message instead of needing to answer a
lot of emails and phone calls.
o You can also create your own private website at MyLifeLine.org.
 When people offer to help with things, let them. Your family and friends could cook
dinner, drive you to an appointment, or babysit.

If you lose your hair due to treatment or have visible surgical scars, strangers may ask
about your diagnosis. Have a response prepared. Again, you may share as little or as
much as you like.



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If you or someone you know has just been diagnosed with colorectal cancer, you may have a
lot of questions. In the next few pages, you will find basic information about colorectal cancer
and questions to ask you healthcare team.


Understanding Colorectal Cancer: What Is Colorectal Cancer?
To understand colorectal cancer, it’s first important to understand what cancer is: basically, the
production of abnormal cells.
The body is programmed to routinely replenish cells in different organs. As normal cells age or
get damaged, they die off. New cells take their place. This is what’s supposed to happen.
Abnormal cell growth refers to a buildup of extra cells. This happens when:
 New cells form even though the body doesn’t need them or
 Old, damaged cells don’t die off.
These extra cells accumulate to form a tissue mass, lump, or growth called a tumor. These
abnormal cells can destroy normal body tissue and spread through the bloodstream and
lymphatic system.
Colorectal cancer is one of the most common cancers in the U.S. today. 90-95% of all
colorectal cancers are adenocarcinomas. This is a cancer that begins in cells that make and
secrete fluids such as mucus. These cells are in glandular tissue.
To better understand what an adenocarcinoma is, consider the word: Adeno means
gland; Carcinoma is a malignant tumor.
Although these tumors are malignant, they all generally start from adenomas. These are
polyps that are not cancerous. The bigger the adenoma is, the more likely it is to become
cancerous.
Colon polyps are a common occurrence. In fact, 25% of people over age 50 have polyps.
Learn About Your Cancer Diagnosis

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Benign vs. Malignant: What’s the Difference?
Benign means not cancerous. A benign tumor can get larger but does not spread to other
tissues or organs.
Malignant means cancerous. A malignant tumor’s cells can invade nearby tissue and lymph
nodes and then spread to other organs. These cells are destructive.
Benign tumors:
 Can be removed
 Usually don’t grow back
 Are rarely fatal
 Don’t spread to other tissues or
body parts
Malignant tumors:
 Can often be removed
 Sometimes grow back
 Can invade other tissues and
organs and cause damage
 Can spread to other body parts
 Can be fatal

The Diagnosis
If you are being examined for colorectal cancer, the first thing your doctor will do is review your
medical history. He or she will conduct a thorough medical exam. Your doctor may conduct
one or more of the following tests.

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Digital Rectal Exam
Why it is done: This is to check the rectum for lumps or abnormalities. About half of colon
cancers can be detected in this way.
What to expect: The doctor will insert a lubricated, gloved finger into the rectum. A rectal exam
is particularly helpful if a test for occult blood is conducted at the same time.
Fecal Occult Blood Test
Why it is done: Blood in stool (bowel movement) can indicate colorectal cancer. It’s sometimes
hidden, or not visible to the naked eye. Stool may contain blood for many reasons. It does not
always mean colorectal cancer.
What to expect: In this procedure, a small sample of stool is placed on a chemically treated
card. A laboratory then tests it for hidden blood. If there is blood found in the stool sample, a
more specialized test like colonoscopy may be necessary.
X-ray of the Large Intestine or Barium Enema
Why it is done: An X-ray provides a picture of the colon. This helps the doctor identify any
polyps.
What to expect: Often this is done by inserting a liquid called barium into the colon through a
rectal tube. This is an uncomfortable procedure, but not painful. It takes about an hour. The
barium provides contrast so polyps show up better on the X-ray.
Colonoscopy
Why it is done: Colonoscopy is used to examine the bowel’s interior surface for abnormalities
like polyps.
What to expect: In this procedure, the doctor inserts a flexible tube into the bowel. The tube
contains a camera. The colonoscopy lets the doctor examine the inside of the entire colon and
rectum. If the doctor discovers a polyp or abnormal tissue, it may be removed and sent for
further testing. Removal of a polyp is called polypectomy.
Biopsy
Why it is done: A biopsy allows the doctor to remove a tissue sample to then be sent to a
pathologist for examination.
What to expect: The doctor will prescribe laxatives or enema before the procedure, to cleanse
the colon. In the procedure, the doctor will insert a colonoscope or sigmoidoscope. The doctor
will anesthetize (numb) the area where the sample will be collected. This will minimize pain.
There will probably be mild bleeding and discomfort after the procedure.
Virtual Colonoscopy
Why it is done: This is a type of CT scan. It uses computer software along with CT imaging to
examine the colon for polyps.
What to expect: In this procedure, a rubber catheter is inserted to force air into the colon.
Some of the benefits of a virtual colonoscopy are that it:
 Does not require the insertion of tubes (as in colonoscopy).
 Prevents the slight risk of possible injury to the bowel.
 Does not require sedation.

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 Makes recovery time shorter.
 Means the person having the procedure won’t need someone to drive them.
Virtual colonoscopy is not available everywhere. Some doctors feel it is almost as effective as
endoscopy in identifying polyps. However, if a polyp is found by virtual colonoscopy, a second
procedure will be needed to remove and examine it. With conventional endoscopy, the biopsy
can usually be done at the same time.
Understanding Your Pathology Report
What is a pathology report?
In order to make a cancer diagnosis, a doctor needs to collect a sample of the tumor cells to
be tested and examined in a lab by a pathologist. A pathologist is a doctor who identifies
cancer and other diseases by studying cells under a microscope. After the pathologist studies
a sample, he or she prepares a pathology report that explains the findings. Doctors use these
reports to diagnosis and stage cancer.
What will be in the pathology report?
The pathology report provides all the pathologist’s findings. Your pathology report may include
some or all of the following:

Your identification information

Your important medical history

Details on how the sample or biopsy was taken

Description of how the sample looked under the microscope
o
Size, color, grade, margins, node status, etc.

Special tests or markers

A written summary of the full report
What do the words in my pathology report mean?
Here is a vocabulary list to help you through your pathology report:
Abnormal cells: cells that do not look or behave like healthy cells
Adenocarcinoma: cancer that develops in gland cells. Gland cells are found in the lining of
some organs and create mucus, digestive juices, and other fluids.
Aggressive: fast growing
Angliolymphatic: means cancer has spread to the lymph nodes

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Antibody: a protein produced by the immune system to fight foreign substances
Atypia: an abnormal cellular structure
Benign: not cancerous
Biopsy: a procedure to take a small sample of tissue
Cell Density: the number of cells in a single sample
Clean/ clear/ negative margins: the outer edge of the tissue sample does not contain cancer
cells
Cytology: the study of a single cell or a small group of cells
Differentiation: how close the cells look to normal cells
Dysplasia: the presence of abnormal cells
Florescence In Situ Hybridization (FISH): a test used to find genetic mutations
Grade: how abnormal the cells look and how quickly the tumor is likely to grow
Granulomas: inflammation of the tissue, often from infection
Histology: the way the cells look under a microscope
Hyperplasia: increased cell production
Inconclusive: with the current sample and tests, it cannot be determined if cancer is present
Invasive: the cancer has spread to surrounding tissues
In Situ: abnormal cells have not spread; the abnormal cells are only where they started
Lymph node: lymph nodes filter lymphatic fluid and store white blood cells.
Malignant: cancerous
Metastasis: cancer that has spread to other parts of the body
Microsatellite Instability: A change that occurs in the DNA of certain cells (such as tumor cells)
in which the number of repeats of microsatellites (short, repeated sequences of DNA) is
different than the number of repeats that was in the DNA when it was inherited.
Necrosis: cell death

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Neoplasm: a growth made up of abnormal cells
Pathologist: a doctor who identifies diseases by studying cells and tissues under a microscope
Pleomorphic: able to change shape
Polyp: a growth that protrudes from a mucus membrane, such as the lining of the colon (Not all
polyps are cancerous, but they are a risk factor for colon cancer.)
Polyposis: the growth of many polyps
Positive margins: the outer edge of the tissue sample does contain cancer cells
Stage: how advanced the cancer is (see the next section on staging)
Stains: used to color the tissues and cells so the pathologist can see them better
Tissue Block: the sample of tissue removed during a biopsy or surgery
Tubulovillous adenoma: A type of polyp that grows in the colon. These adenomas are
considered pre-cancerous and may become malignant.
Vascular invasion: cancer cells are in the blood vessels
Villous adenoma: A type of polyp that grows in the colon. These adenomas are considered
pre-cancerous and may become malignant.
For a more complete glossary, visit mypearlpoint.org/glossary.
Use your pathology report and ask your nurse navigator to fill out the “My
Diagnosis” worksheet included in the Handbook.
Stages of Colorectal Cancer
What Are Stages?
Once colorectal cancer has been diagnosed, it’s important to know the stage of the cancer.
The stage indicates how serious it is. The stage of colorectal cancer depends on the size of
the cancer, lymph node involvement, and if there is any distant spread of the tumor. Knowing
the stage helps the doctor plan the right course of treatment. A pathologist determines the
stage by looking at the cells that are collected during the diagnosis process.
The TNM staging system is used for all types of cancer, not just colorectal cancer. The letters
TNM describe the amount and spread of cancer in the body. For colorectal cancer,

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 T: indicates how far the tumor penetrates into the bowel wall.
 N: indicates whether the cancer has spread to surrounding lymph nodes.
 M: indicates metastasis, which means that cancer has spread to other body parts.
Using TNM, the doctor will assign a stage:
Stage 0
This is an extremely early stage. Abnormal cells are found only in the
superficial layer of the colon wall. Stage 0 is also called carcinoma in
situ.
Stage 1
This is a very early stage. Cancerous cells have been found in the
muscular layer of the colon wall. However, it has not spread beyond
the colon wall.
Stage 2
Cancer has spread through the muscle layer of the colon wall to the
outermost layer of the colon wall. However, the cancer has not
spread to the lymph nodes.
Stage 3
In Stage 3, cancer has spread to nearby lymph nodes but not to
other parts of the body.
Stage 4
Cancer has spread beyond the colon to other parts of the body—
most often the liver and lungs. This is an advanced stage.

There are many different tests to determine stage, including:
 Urine and blood tests
 Additional physical exam
 X-rays of various parts of the body, including lungs, bladder, kidneys, lymph nodes
 Barium enema to check the colon and rectum
 CT scan —This series of x-rays put together by a computer provides detailed pictures
of areas inside the body.
 Ultrasonography—In this procedure, sound waves are bounced off body tissues. The
echoes create a picture.
 MRI scan —A magnet linked to a computer produces detailed pictures of areas inside
the body.
 PET scan —This procedure looks for small amounts of cancer that may have spread or
not responded to treatments. A radioactive sugar molecule is injected into a vein. It has
a radioactive tracer on it. A scan is taken a few hours later. Because tumors use sugar
faster than normal tissues, the tracer helps identify the tumor cells.

How Colorectal Cancer Spreads
There are three main ways that cancer spreads in the body. It can spread through:
 Tissue. Cancer invades nearby normal tissue.
 Lymph system. Cancer invades the lymph system and travels through the lymph
vessels to other parts of the body.

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 Blood. Cancer invades veins and capillaries and travels through the bloodstream to
other parts of the body.
The original tumor is called the primary tumor. When cancer cells break away from it and travel
to other places in the body, a secondary tumor can form. The name for this spreading process
is metastasis.
The secondary tumor is the same kind of cancer as the primary tumor. For instance, if the
cancer cells in the colon travel to the liver, it is called metastatic colon cancer. It is not liver
cancer.
The liver is one of the most common places for colorectal cancer to spread. When colon or
rectal cancer spreads to the liver, it is very serious. However, it can be treated and even cured.

Choosing an Oncologist and Treatment Center
If you’ve been diagnosed with colorectal cancer, it’s important to explore all options related to
colorectal cancer treatment.
Finding an Oncologist
The first step on the colorectal cancer treatment journey is to find an oncologist (medical or
surgical) who inspires trust. Most colorectal cancer patients begin treatment with surgery so
consider contacting a surgical oncologist first. Start with referrals from your primary care
physician, specialist, or insurance carrier. Talk to family and friends who may have
recommendations.
Here are some things to consider when choosing an oncologist:

Is the oncologist board certified?
 How much experience does he or she have in treating colon cancer?
 Do you feel comfortable talking with this doctor? Does he or she listen well?

Is the staff compassionate? Is the environment a good one or do you feel rushed?
 What hospital(s) does this oncologist see patients in?
 What are the office hours?
 What if you have an emergency? Can you call?
 Can this doctor be contacted after hours?
You will be spending a lot of time with the oncologist and staff nurses and technicians, so it’s
important to feel comfortable with them.

Choosing a Treatment Center

Choosing where to receive treatment is just as important as selecting an oncologist. It’s good
to know the differences between hospitals. Here are some guidelines:
 Academic cancer centers: These are affiliated with medical schools. At these locations,
high priority is put on research. They are usually located in large cities.

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 Community cancer centers: The main focus is on patient care.
 Cancer centers: These are noted for a high quality of science and research.
Some questions to ask before choosing where to get your treatment include:
 Volume: How many colorectal cancer surgeries does the surgeon do annually?
 Travel: How far do you want to travel? Would there be extra costs?
 Cost: Is the hospital covered by your insurance plan?
 Accreditations: What accreditations does the hospital hold?
Specific Questions To Ask Your Doctor
 Based on my family and medical history, am I at increased risk for colorectal cancer?
 Are my children or other relatives at higher risk for colorectal cancer?
 What is the stage of my cancer?
 Who should I see: A surgeon? Medical oncologist? Radiation oncologist? Explain the
team to me.
 What treatments do you recommend?
 Will my treatment require a hospital stay and, if so, for how long?
 What side effects should I expect?
 How long will they last?
 Are there long-term risks to this treatment?
 How common are these risks? Can anything be done to reduce the chance of them
happening?
 Will I need a colostomy? Will it be permanent?

Is this treatment likely to cure my cancer? If not, what treatments can extend my life?
 What is the chance of a recurrence?

If a recurrence happens, what can I do?
 What follow-up tests will be done and at what point?
 Are there clinical trials I should consider?
 How will my normal activities change as a result of treatment?
 Should I follow a specific diet?
 Can you recommend support groups in the local area with people I can talk to?
 Will my sexual function be affected?
When you first meet with your doctor, it can be helpful to bring someone else with you. That
way, there’s someone else to hear what is said and to ask questions. Here are some other tips
for talking with your doctor:
 Write out your questions ahead of time.
 Write down the answers your doctor gives you.

If you don’t understand something, ask your doctor to say it in a different way. It’s
important that you understand, and you have a right to know.

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Treatment Options
It’s helpful to understand the possible treatments for colorectal cancer. The following are
overviews of the most common treatments. Reading these should help you know what to
expect, what the potential side effects are, and what the advantages are to each.
 Surgical treatments
 Colorectal resection
 Chemotherapy
 Radiation therapy
 Biologic therapy

Surgical Treatments

The most common treatment of colorectal cancer is to remove the tumor and surrounding
lymph nodes. Surgical procedures for rectal cancer are more complex than for colon cancer. In
rectal surgery, more tissues and muscles related to urinary and sexual functions are involved.
Annual bloodwork may be recommended as colorectal surgeries can have an effect on
metabolism. These lab values can check to make sure you are getting all the essential
nutrients and electrolytes your body needs. Common surgical procedures for colorectal cancer
include:
Prophylactic Colectomy
Some people have a strong family history of cancer or other bowel-related diseases like
intractable irritable inflammatory bowel disease (IBS). These people may choose to have their
colon removed before any problems develop. This procedure may be done laparoscopically.
This is associated with smaller incisions and a shorter recovery time.
Local Excision
A local excision is done when cancer is found at an early stage. A resection is performed
through the anal canal to locally remove the tumor.
Partial Colectomy
If the cancer is larger, it’s necessary to remove both the tumor and a small amount of healthy
tissue and nearby lymph nodes. This procedure is called a colectomy. The healthy portions of
the colon and rectum are reconnected. This reconnection procedure is called anastomosis.
Hopefully your surgeon can preserve anal function (and avoid the need for a permanent
colostomy).
Partial Resection or Total Colectomy and Colostomy
If it is not possible to reconnect the colon, you will need to have a colostomy. This procedure
creates a surgical opening called a stoma. The colon goes through the wall of the abdomen
onto the skin. This creates a path for waste material (feces) to leave the body. If you have a
colostomy, you will need to wear a special bag to collect this waste. This may be temporary or
permanent.

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Colorectal Resection
A colorectal resection is a surgery to remove a section of the large intestine. This is done in
order to remove diseased parts of the colon. This procedure is not just used for colorectal
cancer. It is used in a variety of other diseases like Crohn’s disease, colitis, and diverticulitis, to
name a few.

How does colorectal resection treat colorectal cancer?
When you have colorectal cancer, a resection is done to remove all visually detectable
cancer.

How to prepare for a colorectal resection
The doctor may ask you to stop taking some medicines up to one week before the procedure.
Usually these are drugs that can lead to excess bleeding, like aspirin or blood thinners.

You should also prepare by drinking eight 8-ounce glasses of fluid every day. You may require
a special diet for several days before surgery. The colon must be cleaned out before the
surgery. Your doctor may ask you to take an enema or laxatives. You may have to drink a
large container of solution. This preparation may start several days before the procedure. It’s
not a fun process, but also not painful.

It’s important to arrange for a ride to and from the hospital. You’ll also probably need help at
home for the first few days after the procedure.

What to expect during the procedure
You will be given general anesthesia so you will be asleep during the procedure. The surgery
will be done with either a traditional surgery or with a laparoscope. With laparoscopy, recovery
will be shorter.

During the procedure, the diseased section of the intestine is removed. The two loose ends of
intestine are then sewn together. The surgeon may leave some soft tubes in the abdomen.
These let any fluids drain.

If the doctor thinks the intestines need time to rest and heal, he or she may perform a
colostomy. In this procedure, the surgeon brings the colon onto the abdomen wall. This
opening is called a stoma. One or both ends of the intestine are attached to the stoma. Waste
material (feces) leave the intestine through the stoma and collect in a pouch called an ostomy
bag.

The doctor may leave the colostomy in place for several months as the intestines heal. When
that healing has happened, the ends of the intestine will be joined together. Sometimes, a
permanent colostomy is necessary if most of the large intestine has been removed.

A colorectal resection takes between one and four hours. You will probably be in the hospital
between five and seven days.

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What to expect after the procedure
The doctor may prescribe antibiotics. You may also need medicine for nausea and pain. Some
patients require a nasogastric (NG) tube for a few days. This tube enters through the nose and
goes to the stomach. This helps decompress the bowel.

The intestine will need some time to heal before it can function properly again. At first you will
receive fluid through an IV (needle in a vein such as in the hand). You will need to be on liquid
and soft diets as you get better. Eventually you will work your way back to a regular diet.

If you had a colostomy there will be a pouch attached on the outside of the body. Waste
material (feces) will collect in it. You will have special instructions about diet and activity. For
the first few days after surgery, you’ll be restricted from eating. If you have had a colostomy,
you’ll need to take it easy for a few months.

It is normal to take some time to adjust to a colostomy. Your doctor can help you find a support
group in your area as well as arrange home health care.
Chemotherapy
Although colorectal cancer is often treated with surgery alone, chemotherapy may also be
used. Chemotherapy treatment (often called “chemo”) doesn’t refer to one specific medicine
but a group of many different medicines. Chemo medicines prevent cancer cells from growing
and spreading. Chemo medicines do this by destroying cancer cells altogether or preventing
them from dividing. Chemo affects the whole body because it goes through the bloodstream.
When is chemotherapy used?

Chemotherapy may be given either alone or along with radiation therapy. When given alone, it
is given in a higher dose designed to destroy cancer cells. When given along with radiation
therapy, it is delivered at a lower dose. This is designed to make the cancer more sensitive to
the radiation.
Newer agents designed to inhibit tumor blood vessel growth are also being used for patients
with advanced stage and metastatic colon cancer. A doctor can determine which agents are
most appropriate for the treatment.
Chemotherapy is usually given through the vein, but some forms can be given by mouth. The
medical oncologist will decide how many cycles or courses of chemotherapy are best.
The number of cycles of chemotherapy needed vary. It is relatively common for chemo
treatment to begin 4 to 6 weeks after surgery and recovery.
Typically, after surgery, if you get chemo alone for colon or rectal cancer, you will receive
between 6 and 12 cycles. When you receive chemo along with radiation, you may get 2 cycles
alone and then 2 more with radiation. Then you may get another 4-8 after the radiation is
done.

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Different oncologists use different schedules. The type of chemo drug being used is another
factor. If you are considering chemotherapy for colorectal cancer treatment, you may also want
to ask your doctor about clinical research trials for new chemotherapy drugs and
combinations.

What can I expect from chemotherapy?

Chemotherapy not only weakens and destroys cancer cells at the site of the tumor, but
throughout the body as well. Unfortunately, this means that chemo can unintentionally harm
the development of normal cells like hair, nails, mouth, and digestive tract.
The side effects chemo causes depend on the type of chemotherapy and how many cycles
received. The most common side effects of chemo are:
 Nausea and vomiting
 Fatigue or tiredness
 Confusion, forgetfulness (“chemo brain”)
 Decreased blood counts, sometimes with bruising, bleeding, or infection
 Sores inside the mouth
 Numbness in the hands and feet
 Diarrhea, loose stool

Increased urgency to have a bowel movement or urinate
When chemotherapy is given at a lower dose, these side effects are less common. This
sometimes happens when radiation is necessary too. However, patients often feel very tired.
Irritation of the colon and anus can be a side effect, especially if there is a history of colitis,
Crohn’s disease, or gastrointestinal problems. Make sure to tell the doctor if you have these
conditions before starting chemo. There may be drugs available that can help with these side
effects.

If you experience side effects, call your physician right away. It is better to address side effects
right away, and there are numerous drugs available to help manage side effects. Many side
effects can also be managed by changing what and how you eat.
Chemotherapy can also cause infertility. Talk to your doctor as soon as possible. There may
be ways to preserve your fertility, but they usually need to be done before starting
chemotherapy. Refer to the “Side Effects Management” section of the Handbook for more
information.
How is chemo given?

Chemo medicines come in different forms and can be given in different ways:

Intravenously (IV): As an infusion, the medicine comes through a thin needle (IV) in a
vein in the hand or lower arm. An oncology nurse will insert the needle before each
infusion and take it out afterwards.

Injection: As a single shot into a muscle in the leg, arm, hip, or under the skin in the
fatty part of the stomach, leg or arm.

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 By mouth: As a pill or capsule, taken at home or at the doctor’s office.
 Through a port: This is inserted in the chest during a short outpatient surgery. It is
about the size of a quarter and sits right under the skin. A port is a small disc made of
plastic or metal. A catheter (soft thin tube) connects the port to a large vein. The chemo
medicines are delivered through a thin needle right into the port. Blood can also be
drawn through the port. Once chemo is finished, the port is removed in a brief
outpatient procedure.
 Through a catheter in the chest or arm. This is a soft thin tube that is inserted into a
large vein. This is done in a short outpatient surgery. The other end of the catheter
stays outside the body. This is similar to having a port.
If you have a catheter or port, your medical team will tell you to be sure to watch for signs of
infection.

What’s the advantage of a port or catheter?

Many doctors recommend getting a catheter or port. It makes chemotherapy easier and more
comfortable, as patients don’t have to be restuck each time, like with an IV or injection. Some
colorectal cancer patients have a portable pump attached to the port or catheter. This controls
how much and how fast the chemotherapy medicine goes in. The pump can either be internal
(implanted under the skin during a short outpatient procedure) or external (carried by the
patient). Once chemo is done, the pump is taken out.

How often will I have to have chemo?

Your oncologist will set your treatment regimen. Every chemo regimen is made up of cycles.
This means a period of treatment followed by a period of recovery. For example, you may get
chemo one day and then have a few weeks of recovery with no treatment. That would be one
cycle. Or you may get chemo for several days in a row and then have a recovery period.
Several cycles make up a complete chemotherapy regimen.
The number of cycles in a regimen and the length of each regimen vary from patient to patient.
A lot depends on the medicines used. However, most regimens take 3 to 6 months to
complete. A typical routine is treatment every 3 weeks.
You can get chemotherapy in a variety of settings: at a hospital, in a doctor’s office, or in a
clinic. You may even get chemo at home if you are taking chemo in a pill form or you have a
portable pump.
If you take chemo in a clinic, hospital, or doctor’s office, you usually go home between
treatments. In some cases, you may stay in the hospital to be monitored. This is especially true
if your immune system isn’t working as well as it should be. Your doctor will explain where
you’ll be getting your treatment.
What should I bring to my chemo appointment?



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A chemotherapy treatment at a hospital or clinic can take anywhere from one to several hours.
Although many chemo treatment areas have televisions and magazines, you may want to
bring something to help pass the time. Ideas include:
 A laptop
 Knitting, needlepoint, or crochet
 A thick novel
 Crossword or other puzzle book
 Sketchbook and pencils
 Cards or board games (if you have someone to play with)
 MP3 player or portable CD player to listen to music
 Paper and pens to keep a journal or write letters
Is there anything I should be thinking about before I start chemotherapy?

Chemotherapy treatment can drain most of your energy. This is a major process the body is
going through. There are some things you should take care of before you start chemo:
 Get your teeth cleaned and get a dental check-up. Chemo weakens the immune
system, so you may be more vulnerable to infections caused by bacteria that are
dislodged during teeth cleaning.
 Get any heart tests (like an EKG) that the doctor recommends.

If you’re a woman, get a Pap smear if you’re overdue. Chemo can alter the results of
Pap smears, so it’s best to get one beforehand.
 Find someone to help around the house. Chemo causes extreme fatigue. Line up
someone to help with chores such as cleaning, grocery shopping, carpooling, and
cooking. Don’t be too afraid to ask for help.
 Join a support group if that sounds helpful.
 Find out ahead of time what you should and shouldn’t eat or drink on treatment days.
Tell your doctor all the vitamins, supplements, over-the-counter, and prescription
medicines you take.
 Talk to your doctor about hair loss. Most chemo medicines cause some amount of hair
loss. If you plan on wearing a wig, you might want to go ahead and get it so you can match
it to your hair color and style.
Radiation Therapy
Radiation therapy is also called radiotherapy or radiation. This is a very effective way to
destroy cancer cells that may remain after the colorectal surgery. Radiation is most often used
to treat rectal cancer.

Your doctor may recommend radiation in combination with chemotherapy and surgery.
Radiation can pinpoint the cancer cells very well. In addition, radiation therapy is relatively
easy to tolerate because its side effects are limited to the treated area.


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A radiation oncologist will oversee your radiation treatments. There are three major types of
radiation used for colorectal cancer:

External beam radiation therapy
This is the most common type of radiation used. Short bursts of X-ray beams are fired from the
machine at the cancer. This type of radiation is designed to treat the cancer but affect as little
normal tissue as possible.

Intensity modulated radiotherapy (IMRT)
This less common form of radiation uses many thin beams to focus the highest dose of
radiation on the tumor.

High dose brachytherapy
This form of radiation uses catheters and tubes to direct an extra dose of radiation to the
tumor. This form of radiation is occasionally used to boost the radiation delivered to a rectal
tumor.

In advanced stages of rectal cancer, another treatment option is to combine radiation therapy
with hyperthermia and possibly chemotherapy. Hyperthermia uses heat to damage tumors.
This makes the cancer cells more sensitive to the effects of radiation.

What to expect during radiation
The goal of radiation is to destroy as much cancer as possible while preserving normal tissue.
The radiation oncologist will determine how many treatments you will receive. Sometimes
treatments are given once a day and sometimes twice a day. A treatment usually only takes a
few minutes. The total treatment time can take between 5 and 8 weeks, depending on the total
dose required.

The most common side effects of radiation are burns and irritation to the skin. Radiation to the
rectum can often be painful and include changes in bowel function such as diarrhea, cramping,
and irritation. Fatigue is also a common side effect of radiation. If you experience any side
effects, let your healthcare team know. For more information, read the “Side Effect
Management” section of the Handbook.
Biologic Therapy
Biological therapy is a treatment that works with the immune system. All the parts of the
immune system help protect you from getting diseases and infection. The immune system
includes the:
 Spleen
 Lymph nodes
 Tonsils
 Bone marrow
 White blood cells

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White blood cells are particularly important to the immune system. Here are some terms you
might hear:
 Monocytes and lymphocytes are types of white blood cells.
 B cells, T cells, and Natural killer cells are types of lymphocytes.
The immune system is able to tell the difference between good cells that keep you healthy and
bad cells that make you sick.

Biological therapy can serve two purposes. First, it can help fight cancer by:
 Stopping or slowing the growth of cancer cells.
 Making it easier for the immune system to destroy cancer cells.
 Keeping cancer from spreading to other parts of the body.
Biological therapy can also help control side effects from other treatments like chemotherapy.

Cancer vaccines are one form of biological therapy. Other vaccines are given before you get
sick, but cancer vaccines are given once you have cancer. These vaccines help the body fight
the cancer and keep it from returning.
Ostomy Basics
What is an ostomy?
Ostomy is the general name for a surgical operation to create an opening (stoma) from an area
inside the body to outside the body to get rid of waste such as urine or stool. The waste is
collected in a receptacle, usually a special plastic bag called an ostomy bag. These bags can
be emptied, cleaned, and replaced as needed.
Ostomies are common with colorectal cancer, anal cancer, and bladder cancer especially
when parts of these organs have to be removed. Ostomies can be temporary or permanent
depending on the extent of the surgery.
The care of ostomies requires special supplies and appliances. You will be extensively trained
and educated on how to care for it by your healthcare team.
Types of ostomies include:
 Colostomy: A colostomy creates an opening from the colon or large intestine to outside
the body. Colostomies rid the body of waste and mucus.

Ileostomy: An ileostomy creates an opening from the small intestine to outside the
body. Ileostomies rid the body of waste and mucus.
 Urostomy: A urostomy creates an opening that allows urine to leave the body from the
kidney instead of the bladder.

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Once you become comfortable with cleaning and changing your ostomy bag and have healed
from surgery, you will be able to resume most of your daily activities. Talk to your healthcare
team to learn how to properly care for an ostomy.
What should I ask my healthcare team?
Here are some questions you may want to ask your healthcare team about living with an
ostomy:
 What kind of ostomy will I have?
 Will my ostomy be temporary or permanent?
 How long will it take me to heal?
 How do I need to limit my physical activity and for how long?
 When can I return to work?
 Who will show me how to clean and change my ostomy bag?
 What are the signs of infection or other serious medical issues?
 Where can I buy ostomy supplies, and will my insurance cover them?
 Where can I find an ostomy support group?
 Do I need to change my diet?
What resources are available for cancer patients with ostomies?
United Ostomy Associations of America, Inc. (www.ostomy.org) provides information on living
with an ostomy, a support group locator, and online discussion boards.
Osto Group (www.ostogroup.org) provides discounted and free ostomy products to
uninsured ostomy users.
Questions for Your Healthcare Team
If you’ve just been diagnosed with cancer, you may be confused and overwhelmed. You
probably want answers, but you may not even know what questions to ask. As a cancer
patient, being able to talk openly and honestly with your healthcare team is very important. Use
these must-ask questions as a guide to start talking with your healthcare team.
What is my diagnosis?
This question may seem like a no-brainer, but in the rush of appointments, you may not
receive a clear answer. If you are unsure of your diagnosis, ask your oncologist. Sometimes
more specific tests are needed to make an exact diagnosis.
What is my prognosis? What stage is my cancer?
Knowing your prognosis can help you better prepare for the future and select your best
treatment plan. In order to know the stage of your cancer, your doctor will need to do tests.
These may include scans, genetic testing, and/or a biopsy. The answer to these questions
may be difficult to hear. You may consider having a family member or friend with you at this
appointment.
What are my treatment options? What would you recommend?
Ask your oncologist to explain all your treatment options, including possible side effects and
cost. Ask your oncologist which treatment he or she recommends. If you are unsatisfied with
your options, do not be afraid to seek a second opinion

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Am I eligible for a clinical trial?
Clinical trials help improve the standard of care for all cancer patients. Based on your situation,
a clinical trial may also be your best treatment option. Each trial has its own eligibility
requirements.
What are the possible short-term and long-term side effects of treatment? How will
these affect my normal activities?
Always ask about short-term and long-term side effects before beginning treatment so you are
prepared. You should also consider short-term and long-term side effects when deciding which
treatment plan is best for you.
How can I manage these side effects?
Some side effects can be easily managed through diet, exercise, or over-the-counter
medication. Other side effects may require prescription medication, occupational therapy, or
physical therapy which your oncologist can prescribe as needed. See the “Side Effects
Management” section of the handbook.
Will my ability to have children be affected? Is there anything I can do to preserve my
fertility?
Some cancers and cancer treatments can affect your fertility, but you do have options. Before
treatment, you may be able to freeze eggs or bank sperm. There may be steps you can take
during treatment to protect your reproductive system as well. For more information, visit Fertile
Hope at http://www.fertilehope.org/.
How can I keep myself as healthy as possible during treatment?
Your own immune system plays a big part in your fight against cancer. It is important to stay as
healthy as possible while undergoing cancer treatment. See the “Nutrition” section of the
Handbook.
Where can I find help with financial concerns?
Evaluate your financial situation as soon as possible. You will not want to deal with financial
stress in the middle of treatment when you may not feel well. See the “Practical Concerns”
section of the Handbook for more help with financial, lodging, and transportation concerns.
Where can I find help with lodging or transportation?
When beginning cancer treatment, planning ahead is key. Some treatment centers have
lodging coordinators or social workers to help you with the logistics of treatment.
What will my follow-up care plan include?
After you finish treatment, make sure you and your oncologist create a follow-up care plan.
You will need to check for recurrence. You may also need follow-up care for long term side
effects.
When can I call myself a survivor?
According to the National Cancer Institute’s definition of a cancer survivor, “a person is
considered to be a survivor from the time of diagnosis until the end of life.”



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Clinical trials are medical research studies that test new ways to prevent, screen, diagnose, or
treat a disease. Cancer clinical trials determine if a treatment shows an improved way of caring
for patients. Clinical trials improve cancer care for all. Talk to your doctor about clinical trials.
Depending on your specific diagnosis, a clinical trial may be your best treatment option.


All About Cancer Research
Cancer research involves very highly trained doctors and scientists trying to figure out how
cancer works. Research is always done by a set of rules, called the “scientific method” that
ensures the information will be valid. Researchers begin by looking for answers to questions
like these:
 What causes cancer?
 What makes cancer cells keep growing?
 What destroys cancer cells?
 What stops cancer cells from growing?
By studying how cancer cells behave in animals, researchers can develop theories, or ideas,
about potential treatments for humans with cancer. Once a treatment is ready to be tested on
humans, researchers conduct clinical trials.
What are clinical trials?
A clinical trial is a medical research study that tests new ways to prevent, screen, diagnose, or
treat a disease. The word “clinical” means related to examining and treating patients.
Cancer clinical trials help to determine if a treatment, drug, or procedure shows a better way of
treating a particular cancer, or provides a way to treat a condition for which there wasn’t a
treatment before.
It takes years of thought and planning to have a clinical trial accepted by the U.S. Food and
Drug Administration (FDA). The FDA must approve the trial before researchers can recruit
patients. Clinical trials allow patients access to the latest research treatments before they are
available to the public.
Who sponsors clinical trials?
Medical or research institutions, pharmaceutical and biotechnology companies, the
government, and nonprofit groups who want to improve current cancer treatment can all
sponsor clinical trials. Some trials are "investigator initiated," which means a researcher or
doctor created the trial, but these trials face the same strict requirements.
What do the phases of clinical trials mean?
Phase I trials answer the questions: Is the drug or treatment safe? What is a safe dose? What
are the side effects? Phase I trials are small, each only involving 20-80 participants. These
trials are usually the first time a drug or treatment has been tested in humans.
Clinical Trials

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Phase II trials tell researchers if the drug or treatment is effective in a larger group (100-300
participants) and help identify safety concerns.
Phase III trials determine within a large group (1,000 – 3,000 participants) if the experimental
drug or treatment works better than what is currently used and if there are additional side
effects. Most Phase III trials are randomized, meaning some participants will receive the
experimental drug or treatment while others will receive the standard drug or treatment
currently accepted by the medical community as best for their cancer type (standard of care).
Phase IV trials allow researchers to learn more about the drug or treatment and its risks,
benefits, and best use.
Usually FDA approval comes after large phase III trials. However, sometimes special
consideration is given to treatments that show great promise in early trials.
After enough data is gathered to prove that the new treatment is effective or more effective
than current treatments, the FDA will investigate the findings and approve the treatment for
use. After FDA approval, doctors can prescribe treatments to their patients without enrolling
patients in clinical trials.
For a participant, what happens in a clinical trial?
Each clinical trial recruits and screens participants through participating treatment centers. In
order to learn if a drug is effective, the participants must be similar in the type of diagnosis and
other factors. Trials are designed to be very specific so researchers can know that the drug or
treatment being studied is causing changes. For example, a clinical trial may be designed to
answer a specific question, such as this: “Is this treatment effective for colorectal cancer in
patients who have not received previous treatment?”
Participants must be eligible in order to qualify for the trial. Some possible requirements for
eligibility include:
 Cancer type
 Stage
 Specific tumor types or genetic markers
 Treatment history
 Age
 Other medical conditions
If you qualify for a trial, your healthcare team will provide you with all the information about the
trial. They will tell you, in a process called informed consent, how the trial will be conducted
and the possible risks and benefits of the trial. You will then sign a document stating that you
understand the details of the trial and that you are willing to participate. Even after signing the
document of informed consent, you may withdraw from the trial at any time for any reason.
The way you receive treatment depends on the specific clinical trial. Clinical trial treatments
can come in many forms. These include but are not limited to the following:

Intravenous (IV) medications given through a port or IV line
 Shots
 Oral medications

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 Surgery
 Radiation
As with any cancer treatment, clinical trial treatments may come with side effects. Your
healthcare team will help you manage these side effects. It is very important to report to your
healthcare team any side effects that you experience. Part of what researchers are studying is
how the treatment affects the whole body, not just the cancer cells.
How is a clinical trial treatment different from other treatments?
Patients who decide to participate in clinical trials receive excellent care and attention.
Throughout the trial, your healthcare team will closely monitor you for improvements and
adverse side effects.
Researchers want to control as much about your care as they can to make sure it is the
treatment that is helping your cancer improve, and not something else. Because of this, you
may have restrictions on what you can eat and what other medicines you can take.
Although you should always follow your treatment plan and not miss appointments, doing so is
especially important with a clinical trial. Clinical trials must have consistency among the
participants to know if the treatment really is working.
Are clinical trials a “last resort” for cancer patients?
Patients who are no longer helped by existing standard of care treatments may find that a
clinical trial provides hope, but many patients begin their treatment program with a clinical trial
because the treatment best suited to their situation is still being tested. Some clinical trials
even exclude patients who have already received another form of treatment.

When participating in a clinical trial that evaluates if a new treatment is better than the current
standard treatment for your cancer type, you will always receive treatment – either the
standard of care or the new treatment being studied. By being in a clinical trial, you may
receive the added benefits of a new treatment before it is available to the public.
In many cases, cancer research moves at a faster pace than the FDA treatment approval
process. Researchers have made important discoveries about biomarkers and mutations that
affect how cancers respond to treatment. Because of the long time it takes for a treatment to
be tested through the clinical trials process, many of these breakthrough treatments are still
only available through participating in a clinical trial.

Why Should I Consider A Clinical Trial?
A clinical trial is a medical research study that tests new ways to prevent, screen, diagnose, or
treat a disease. The first step is to speak with your oncologist to find out if a clinical trial is right
for your cancer journey. The National Comprehensive Cancer Network (NCCN), an alliance of
21 leading cancer centers, believes that “the best management for any patient with cancer is in
a clinical trial.”
Why should I consider a clinical trial?
Here are the top reasons why you should consider a clinical trial:

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Complete care
The "standard of care" is what the medical community agrees is the treatment for a specific
type of cancer given the patient's overall health. Clinical trials ALWAYS provide treatment that
is the standard of care or better. For example, in a randomized Phase III trial for a promising
new chemotherapy drug, some patients would get the treatment under study while others get
the standard of care. Or some patients would get the current standard of care plus the
treatment under study while others get just the current standard of care.
Personalized Medicine
Many of the newest clinical trials focus on very specific tumor types such as tumors that carry
specific genetic mutations, markers, or DNA sequencing. Basically, these treatments are
tailored to individual cancer diagnoses. Many of these treatments are only available through
clinical trials.
Careful monitoring
Because the promising new treatment is being carefully studied, patients are also carefully
monitored by health care professionals to see how they are doing and to watch for side effects.
So, patients enrolled in clinical trials tend to talk with their health care professionals more often
and are watched more carefully than patients not involved in a trial.
Safety first
Requirements for clinical trials are strictly managed by the Food and Drug Administration.
Before a drug is approved for testing in humans, the FDA ensures that it has gone through
strict testing protocols in laboratory animals.
Close to home
Most people are familiar with the tremendous research being conducted all over the country at
research institutions, but in fact, many community cancer centers offer opportunities for their
patients to participate in clinical trials. Depending on the type of clinical trial you seek, you may
have many options that do not require you to travel.
Scientific advancement
Without clinical trials, there is no progress toward cures for cancer. By participating in scientific
research through a clinical trial, you can help future cancer patients access new, better
treatments. You can play a more active role in your own health care. People who are treated
through clinical trials have access to the best new treatments before the general public.
Now that I know the benefits of clinical trials, what are the risks?
There are risks involved with the treatment for any life-threatening illness, including treatment
offered through clinical trials:
 There may be difficult side effects from medications or treatments.
 The treatment may not be effective.
 The clinical trial may require extra time for trips to the study site, treatments, hospital
stays, or complex dosage requirements.

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However, through the process of "informed consent," your medical team will make sure you
understand all the risks and benefits.
How can I find a clinical trial?
If you are interested in participating in clinical research, your first conversation should be with
your doctor. She or he may be able to suggest trials or help you search for appropriate options.
My PearlPoint’s Clinical Trial Locator (my.pearlpoint.org/clinical-trials/search) uses
clinicaltrials.gov for our search data, as all clinical trials have to be registered with them. Be
aware that the information may not be up-to-date. Your best source of information will be with
the facility that is conducting the clinical trial. Their contact information will be clearly noted.

How To Talk to Your Doctor About the Latest Cancer Research
If you are interested in participating in a clinical trial, the first step is to talk to your healthcare
team.
How To Start the Conversation
Here are some tips for talking to your doctor about clinical trials:
 Don’t be afraid to ask. Your doctor may not bring up clinical trials, but you are the
person being treated so you should be involved in planning your treatment.
 Do not feel that you are second-guessing your doctor. Your doctor should be willing to
discuss options with you and answer all your questions without feeling insulted.
 Do not be afraid to seek a second opinion if necessary.

If possible, talk to your doctor about clinical trials before you begin treatment. Some
trials require that participants have not received any other treatments.
 Write down your questions and what you want to talk about before your appointment.
Organize your thoughts and your notes so you don’t forget anything.
 You may wish to have your caregiver go with you to your appointments. Your caregiver
can take notes or ask any additional questions if you happen to forget.
 Search My PearlPoint’s Clinical Trial Locator (my.pearlpoint.org/clinical-trials/search) to
find possible trials on your own. If you’ve done some research, beginning the
conversation with your doctor may be easier, especially if your treatment location is not
a large research center.
 Keep in mind that while a clinical trial may be one person’s best option, there may not
be a clinical trial option for your diagnosis. You should discuss ALL your treatment
options with your healthcare team to create the best treatment plan for you.
What To Ask Before Starting a Trial
Once you find a trial and meet the eligibility requirements, you will go through a process
called informed consent. During this process, your healthcare team and members of the
research team conducting the trial will tell you all you need to know about the trial. Make sure
you receive answers to the questions below:
 What is the purpose of the trial?
 How will the trial treatment be better for me than other treatment options?

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 How will the healthcare team learn if I am eligible for the trial?
 Where will I receive treatment?
 What type of treatment will the trial involve?
 What will happen at my appointments? (For example, will I have scans, blood tests,
and/or examinations?)
 During the treatment, who should I contact with questions and concerns?
 What are the risks and benefits of this trial?
 Will my insurance cover the cost of the trial?
 Will I receive any financial assistance for travel and lodging?
 What will my follow-up care be?


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Most cancer patients experience some side effects as a result of their diagnosis or treatment.
The type of side effects depends on your diagnosis, treatment type, and overall health. Some
of the most common side effects for colorectal cancer patients include: constipation, diarrhea,
fatigue, gas and bloating, loss of appetite, nausea, pain, sexual dysfunction, and weight loss.
Talk to your healthcare team about your risk for side effects—which side effects are you most
likely to experience?

Side effects can be managed a variety of ways with lifestyle changes, nutrition, exercise, and
medication. Read through the following sections to learn tips for managing your side effects to
help improve your cancer journey.


Changes in Taste and Smell
Changes in taste and smell can interfere with maintaining good nutrition during treatment. Here
are some ways to manage changes in taste and smell.
 Note which foods and liquids taste and smell different.
o Any or all of the four tastes — salty, sweet, bitter, and sour — may be affected.
o It is common for meats to taste especially bitter.
o Sometimes one taste is specifically more pronounced. For example, everything
may taste really salty or sweets may taste so sweet they are not appealing.
o Pay attention to changes in taste to be able to apply these tips appropriately.
 Take care of your mouth and teeth.
o Dental issues may affect taste, so visit your dentist prior to treatment.
o Rinse mouth thoroughly before eating using plain water or a baking soda/salt
water mixture (¼ tsp. of baking soda and 1/8 tsp. salt with 1 cup warm water).
o Sometimes medications, chemotherapy drugs, and radiation cause a film to form
inside the mouth, affecting the taste buds. Rinsing may help to clean away this
film.
o After meals, rinse with an alcohol-free mouthwash or the baking soda/salt water
mixture.

If meats taste bitter or are not appealing, try alternative protein sources such as eggs,
beans, cheese, or nuts.
o If beef tastes bitter, try chicken, turkey, or fish.
o Marinades that are sweet are often able to counter the bitter flavor of some
meats.
o Other sources of protein to try are eggs, cheese, nuts, or beans.
o It is important to find high protein foods that are palatable to best meet the body’s
protein needs.
 Try to keep odors to a minimum.
o Do not cook anything with a long cooking time in the house where the person
who is in treatment spends most of his/her time.
Side Effect Management

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o Use cups that have lids and use straws to limit the odor of any liquids that are not
appealing.
o Serve foods at room temperature. Hot foods tend to have a stronger smell than
cold foods.
 Limit exposure to metal.
o Eat using plastic utensils instead of metal.
o Prepare and store food in glass pans and containers.
o Between meals, sour flavors such as lemonade or candy may help. Mint candy or
gum may also give some relief.
o Tart or bitter flavors may be more palatable. Try citrus and vinegar based foods.
Seasoning food differently and more heavily may help to mask the metallic flavor.
Try barbeque sauce, salad dressings, ketchup, mustard, relish, onion, garlic,
rosemary, ginger, chili powder, basil, oregano, tarragon, curry, and cumin.
 Don’t be afraid to try some new foods.
o Sometimes foods you didn’t like before cancer treatment become more appealing
as tastes change.
o Do not be surprised if favorite foods do not taste the same as they did before.
o Be patient as these changes are usually temporary.
o Try to make good nutrition a priority and stock your home with a variety of
healthy foods.
“Chemo Brain” (Cognitive Issues)
Many cancer patients report issues during and after cancer treatment including:
 memory loss

forgetfulness

loss of concentration
 confusion

These side effects result from changes in the cognitive (thinking) processes of the brain. Even
though these side effects are commonly referred to as “chemo brain,” factors other than
chemotherapy can lead to cognitive side effects such as:
 brain cancer or brain metastasis
 brain surgery

radiation to the brain
 medications

fatigue
 anemia
 hypothyroidism
 stress and anxiety

Cognitive side effects can be short term or long term. This depends on the cause of the side
effects, the age of the patient, and the overall health of the patient. If the cause is medication,

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once the medication is stopped, cognitive issues should improve. If surgery or radiation
damages the brain or nervous system, the side effects may not improve over time.
Delirium is a severe cognitive issue indicated by loss of awareness and memory, drastic
changes in behavior and judgment, and lack of muscle control. Delirium can be dangerous if
the person is left alone. Delirium is most likely to occur in advanced cancer patients or near
end of life.
Cognitive issues present many challenges. Because the direct cause of cognitive issues can
be unclear, they are difficult to treat. Healthcare professionals are still researching cognitive
issues as they relate to cancer and cancer treatment.
Changes in memory and brain function can be distressing, but many patients share the same
experience. There are some things you can do to manage cognitive side effects.

 Plan ahead.
o Write to-do lists.
o Keep a detailed calendar of appointments and other important dates.
o Leave notes around the house to remind yourself to do things.
o Track your medications and use a weekly pill box.
o Lay out everything you need for the day the night before.
o Use your phone to set reminders.
 Get organized.
o De-clutter your home and your workspace.
o Make sure everything has a place.
o Put keys in bowl by the door every day.
o Leave your cell phone on your nightstand.
o Use labels for storage areas and boxes.
 Minimize distractions.
o Avoid multitasking; focus on one task at a time.
o Put your phone and other unnecessary electronic devices away when working.
 Exercise your brain.
o Do “brain exercises” by taking free online quizzes or playing along with game
shows.
o Try Sudoku or crossword puzzles.
o Read.
o Learn a new hobby such as painting or writing.
 Exercise your body.
o Exercise is not only good for your body. It can make you feel better mentally, too.
Exercising releases mood-boosting endorphins.
o Exercise also combats fatigue, which can contribute to cognitive issues.
o Try going for a daily walk or taking an exercise class.
o Ask your healthcare team before beginning any exercise program.
 Eat well.
o Choose foods that promote healthy brain functioning such as fish (omega-3 fatty
acids), dark leafy greens, fresh fruits and vegetables, and whole grains.
o Avoid alcohol and other substances that alter cognition.

 Get plenty of rest.

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o Being tired can make you less focused.
o Fatigue and insomnia are common side effects of cancer treatment.
 Check red blood cell counts.
o Anemia is a condition that occurs when the body does not have an adequate
amount of red blood cells.
o Anemia can cause cognitive issues.
o Ask your healthcare team to check your red blood cell counts if they are not
doing so already.
 De-stress.
o Anxiety and stress can cause or worsen cognitive issues.
o Try to relax in a way that works for you. Consider trying:
o Deep breathing
o Meditation
o Taking a warm bath
o Your doctor may be able to prescribe medication to help with anxiety and
depression.
o Try seeking emotional support from a support group or one-on-one partnering
organizations.
 Ask for Help.
o Be honest with your friends and family about your “chemo brain.”
o If you explain what you are going through, they can be more understanding.
 They can also help you manage your side effects by sending you friendly
reminders or helping you organize your space.
o As always, talk to your healthcare team about your side effects and ways to
manage them.
Constipation
Constipation is common during cancer treatment. It can be caused by many factors such as
cancer type, food and liquid intake, surgery, or medications. Follow these tips to manage
constipation and promote regularity.

 Soluble fiber and insoluble fiber are both important for overall health and nutrition.
o Soluble fiber is found in oats, beans, sweet potatoes, and fruits.
o Soluble fiber is completely digested by the body. Soluble fiber reduces
cholesterol, stabilizes blood sugar, and rids the body of toxins.
o Insoluble fiber is found in wheat, nuts, seeds, and fruit and vegetable skins.
o Insoluble fiber is not digested by the body and is excreted as waste. Insoluble
fiber promotes regularity.
 Drink plenty of liquids.
o Fluid helps your body process fiber without discomfort. A good starting goal is
eight 8-ounce glasses of fluid per day.
 Gradually increase your fiber intake.
o Your daily goal should be between 25-35 grams daily.

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o Fiber is mostly found in plant foods, such as fruits and vegetables, beans,
legumes, whole grain cereals, breads, and oatmeal.
 Eat 3-5 servings of fruits and vegetables daily.
o Choose whole fruit instead of juice.
o Eat the skins and seeds for extra fiber.
o Try to have a fruit or vegetable with each meal or snack.
 Choose foods that promote regularity.
o Eat cereals, breads, and pastas that are made with 100% whole grain.
o Have brown or wild rice in place of white rice or potatoes.
o Choose hot cereals like oatmeal or cold cereals with at least 5 grams of fiber.
o Choose whole wheat breads, whole corn or wheat tortillas, and whole grain
crackers instead of refined products.
o Eat more beans, lentils, and peas. Add them to soups and casseroles, or have as
a main entrée.
o Beans are also a great source of protein, so you can use them as a substitute for
meat at mealtimes.
o Beans can be gas forming, so add them gradually. If you experience bloating or
discomfort, you may want to limit them in your diet.
 Try plum or prune juice.
o Start with a small amount such as a ½ cup.
o Eating dried prunes may also help relieve constipation.
 Try to include exercise or physical activity in your daily routine.
o Physical activity is a natural way to help constipation.
o Always discuss any exercise or physical activity with your healthcare team before
making changes.
 Talk to your healthcare team about medication or supplements to help with constipation.
o There are over the counter medications that may help with constipation but you
should always check with your doctor first before taking anything.
Diarrhea
Diarrhea occurs when foods pass through the body too quickly. The body cannot absorb
enough nutrients, vitamins, minerals, and water. Follow these tips to carefully manage diarrhea
and prevent dehydration and malnutrition.
 Contact your healthcare team for advice managing diarrhea.
o If you have sudden diarrhea, have diarrhea for more than 24 hours or are
experiencing pain, cramping, or blood in your stools, call your healthcare provider
immediately.
o Take medications or supplements only if they are recommended by your
healthcare team.
o Always ask your healthcare team first before taking anti-diarrhea medications.

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o Always talk to your healthcare team or a dietitian before taking any supplements.
 Stay hydrated to replace fluid losses.
o Be sure to drink plenty of clear liquids (water, ginger ale, sports drinks, or
electrolyte replacement drinks) for 12 to 24 hours after a sudden bout of diarrhea.
o Make a homemade electrolyte replacement drink by mixing the following
ingredients: ¼ teaspoons salt, 8 teaspoons sugar, 3 tablespoons orange juice
concentrate, and 4 cups water.
o Let carbonated drinks lose their fizz before you drink them.
o Drinking clear liquids helps the bowel rest and replaces lost fluids.
o Healthy people need a minimum of 8 cups of liquid per day. You may require
more to replace fluids lost with diarrhea.
 Eat 5 or 6 small meals per day instead of 3 larger meals.
o Eating smaller meals may put less stress on your bowels and will make it easier
for your body to digest food.
 Choose foods and drinks carefully.
o Very cold foods and very hot foods can make diarrhea worse.
o If your diarrhea gets worse after eating a certain food, stop eating that food until
you recover.
o Avoid foods and drinks that can make your diarrhea worse. High fiber foods, raw
fruits and vegetables, full-fat dairy products, foods and drinks that contain
caffeine, and spicy or high-fat foods can make diarrhea worse.
o Choose foods that help manage diarrhea, like white rice, puffed rice cereal or
other low-fiber grains, soft fruits like bananas and applesauce, cooked soft
vegetables, and low-fat meats and dairy products.
Difficulty Swallowing
Treatment to the head and neck can make swallowing difficult and painful. This may make it
hard to eat well and maintain a healthy weight. Follow these tips to make swallowing easier.
 Chemotherapy or radiation to the head and neck can harm the cells that line the throat
and cause discomfort.
o Higher doses of radiation can cause more discomfort.
o Chemotherapy and radiation treatment at the same time may make side effects
worse.
o Drinking alcohol or using tobacco can make side effects worse.
 Use mealtime tactics to make swallowing easier.
o Eat 5 or 6 small meals each day instead of 3 large meals. It may be easier to eat
a smaller amount of food at one time.
o Cook foods until they are soft and tender.
o Moisten and soften foods with gravy, sauces, broth, or yogurt.
o Consume liquids with meals.
o Sip drinks through a straw; this may make them easier to swallow.
 Avoid foods that are hard to swallow or irritating.
o Avoid coarse foods that do not soften in the mouth.

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o Avoid sharp and crunchy foods like potato and tortilla chips.
o Avoid spicy foods.
o Avoid acidic foods like lemons, lime, oranges, and tomatoes.
o Be careful eating hot foods to reduce the risk of burning your mouth. Cold foods
may be soothing.
o Avoid alcohol.
 Choose foods that are easy to swallow.
o Try breakfast foods like instant oatmeal, grits, pancakes, waffles, and cold cereal
that has been softened in milk.
o For a main dish, try chicken, tuna or egg salad, soups and stews, soft cooked
fish, tofu, and meatloaf.
o Pick side dishes like cottage or ricotta cheese, macaroni and cheese, mashed
white or sweet potatoes, and rice or risotto.
o Try desserts like custard, tapioca pudding, ice cream, milkshakes, and sherbet.
o Choose snacks like creamy nut butters, applesauce, gelatin, smoothies, and
yogurt.

Dry, Itchy Skin
When cancer treatments fight cancer cells, they can also affect healthy cells. This can result in
certain side effects including skin changes. Side effects of the skin commonly occur with two
cancer treatments: external beam radiation therapy and new targeted therapies.
External Beam Radiation Therapy
With external beam radiation therapy, high-energy radiation rays from outside the body are
used to kill and shrink cancerous tumors. The radiation is targeted at a specific area of the
body. This therapy usually consists of daily treatments over several weeks.

Skin side effects, such as the following, do not usually appear until about the third week of
treatment and may continue after finishing treatment:
 The skin at the treatment area may become red, dry, and tender like a mild to moderate
sunburn.
 The skin may also become very itchy, which is a condition called pruritus.

In some cases, the skin may even darken, swell, blister, or peel away.

If the skin becomes moist or cracked, you are at risk for an infection.

If side effects become too severe, your radiation oncologist may stop or delay treatment to
allow your skin to rest.

Targeted Therapies
Targeted therapies focus on or “target” a specific type of cell or molecule. Common types of
targeted therapy drugs attack the epidermal growth factor receptor (EGFR) to stop cancer cells

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from continuing to grow. Because EGFRs are also important to normal skin cell growth, this
may cause skin side effects.
The most common skin side effects with targeted therapies are rashes, dry and itchy skin, hair
loss, redness, and inflammation around fingernails and toenails. These side effects most
commonly appear after the second or third treatment.

The following are targeted therapies (drugs) that commonly cause skin changes:

Drug
Type of Cancer
Erlotinib, Gefitinib, Cetuximab,
Panitumumab
Colorectal, Head and Neck, Lung,
Pancreatic
Sorafenib, Sunitinib
Kidney, GIST, Liver
Ipilimumab
Melanoma
Vemurafenib
Melanoma
Everolimus and Temsirolimus
Kidney, Pancreatic
Source: American Society of Clinical Oncology

How can I manage my skin side effects?
First, always tell your healthcare team about any skin changes you notice. Some side effects
can be easily managed with prescription creams or oral medications. Here are some tips to
help take care of your skin while undergoing cancer treatment:

 Avoid irritants.
o Use unscented bath and household products including soap, shampoo, lotion,
detergent, and dryer sheets.
o Do not use bath products containing alcohol. Alcohol dries the skin, making
irritation worse.
o If your facial skin is affected, avoid using makeup, or switch to a sensitive skin
brand.
o Always wear gloves when cleaning, and avoid skin contact with cleaning
products.
o Do not shower or bathe with extremely hot or extremely cold water.
o Stay out of the sun, or wear protective clothing and sunscreen if you must be
outside.
o Do not use tanning beds.
o Do not use chlorinated pools or hot tubs.
 Let your skin rest.
o Do not scratch or pick at your skin.
o Do not pop blisters.
o Wash skin with care.
 Use a mild, fragrance-free soap.
 Do not scrub the skin.
 Let warm (not hot) water gently run over the affected area.
o Do not wear tight clothing over the affected areas.
o Do not use adhesive bandages.
 Moisturize.

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o Keep skin well moisturized.
o Use petroleum-based skin protectants or unscented lotions.
o Look for moisturizers specifically for sensitive skin.
o Ask your doctor which over-the-counter moisturizer is best for you.
o Use a humidifier while you sleep, and keep the temperature cool.
o If you are having radiation treatment, do not apply moisturizers right before
treatment. It’s better for your skin to be clean and clear during actual treatments.
 Watch for signs of infection.
o Signs of infection include:
 swelling, redness, or warmth
 cloudy drainage or pus instead of clear

fever
 bad smells
 Tell your doctor immediately if you notice signs of infection. You may need an antibiotic.
If left untreated, infections can become very serious and spread to other parts of the
body.
Dry Mouth
Dry mouth is common during and following cancer treatment. Symptoms of dry mouth are
thirst, sore mouth or throat, difficulty swallowing, and changes in taste. Follow these tips to
manage dry mouth.
 Chew gum or suck on ice chips, hard candy, or popsicles to help relieve dry mouth.
o Keeping gum, ice chips, candy, or popsicles in the mouth helps keep the mouth
moist.
o Choose sugar-free or low-sugar gum or candy for prevention of cavities.
o In place of ice chips, try frozen grapes.
o Use lip balm if your lips become dry.
 Choose foods that are easier to chew and swallow.
o Choose soft foods like scrambled eggs, puddings, and ice cream.
o Avoid dry foods.
o Cut your food into small pieces to make it easier to chew and swallow.
o Soups and stews are good options, as long as meats are soft or cut into small
pieces.
o Try mashed potatoes and rice instead of crackers or breads.
o Choose canned fruits or applesauce instead of raw fruits.
o Puddings, ice cream, and sorbet are also good options.
o Serve foods with gravy, broths, or sauces. This will make them easier to chew
and swallow.
o Season your food with citrus and herbs instead of salt or hot spices.
 Drink at least eight to ten 8-ounce cups of liquid each day.
o Drinking liquids with meals can make it easier to swallow foods.

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o Sip cool drinks in between meals to ensure adequate fluid intake.
o Tart drinks in small amounts, such as lemonade, may help your mouth produce
more saliva.
o Keep a glass of water next to your bed at night. Drink when you wake during the
night.
 Eat small meals, and eat more often.
o Eating small, frequent meals will ensure that you are meeting your nutritional
needs.
o Try to have a good source of protein with meals and snacks. Eggs, cottage
cheese, yogurt, beans, lentils, and smoothies are good soft food choices that
also provide protein.
 Promote a moist mouth.
o Rinse your mouth every 1-2 hours.
o Mix ¼ tsp. of baking soda and 1/8 tsp. salt with 1 cup warm water. Rinse with
plain water after using this mixture.
o Do not use a mouthwash that has alcohol. Alcohol makes a dry mouth worse.
o Ask your doctor if an artificial saliva product might help. Radiation and some
medications can decrease saliva production.
 Avoid things that make dry mouth worse.
o Alcoholic drinks can worsen dry mouth.
o Do not smoke or use other tobacco products.
o If you do smoke, talk to your healthcare team about quitting.
 Tell a doctor or nurse if you have white patches in your mouth.
o White patches can be evidence of an infection.

Fatigue
Fatigue impacts quality of life and can make it hard to eat healthy meals. The body needs
proper nutrition to function. Improper nutrition can make other side effects worse. These tips
can help manage fatigue.

 Cancer-related fatigue primarily occurs because the body requires additional energy to
heal.
o Other side effects, medications, and stress can make fatigue worse.
 While rest is important, too much rest can make you feel more tired so stay as active as
possible.
o Try going for a daily walk.
o Talk to your healthcare team before beginning any exercise program.
 Go no longer than 4-5 hours without eating throughout the day.
o Try to eat a balanced breakfast every day.
o Try to eat small meals and snacks rather than large meals.

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 Eat foods that provide sustainable energy; avoid foods that do not.
o Try to include a source of protein at every meal to sustain energy released from
food.
o Try to limit sweets and sugary foods.
o Avoid alcohol, caffeine, and chocolate in the evening.
 Stay hydrated by drinking liquids throughout the day.
 Stock your kitchen with easy-to-prepare foods and meals.
o Ask your family and friends to help you shop for food and prepare meals.
o Prepare food when you feel your best, and save it for later.
o Prepare large amounts of your favorite meals then freeze meal-sized portions for
later.
 Try keeping a food and fatigue journal to find patterns that trigger fatigue.
 Discuss fatigue with your healthcare team.
o Ask your doctor to check for nutrient deficiencies, such as protein, iron, B
vitamins, and vitamin D.
o Talk to your healthcare team about other side effects such as anemia, pain, or
vomiting.

Feeling Full Quickly
Feeling full too quickly is a common side effect, especially after abdominal surgery. This can
cause weight loss. Not eating enough weakens the body and delays healing. Below are some
tips to ensure proper nutrition.
 Eat small, frequent meals throughout the day.
o Smaller meals are easier to digest and will allow you to better meet your needs
throughout the day.
o Keep healthy snacks on hand to eat between scheduled meals.
 Avoid foods and actions that may cause gas or bloating.
o High-fat foods take longer to digest. They can make you feel fuller between
meals. Avoid fried or greasy foods.
o Gas-forming foods include: broccoli, cauliflower, Brussels sprouts, cabbage,
corn, turnips, onions, peas, garlic, cantaloupe, watermelon, apples, avocado,
beans, lentils, and nuts.
o Stop behaviors that involve swallowing extra air. Do not suck on ice or candy,
chew gum, drink carbonated drinks, or drink through a straw.
 Drink liquids between meals rather than during meals.
o Drinking with your meals and snacks can fill you up more quickly.
o Avoid carbonated drinks. Carbonated drinks can make you feel fuller.
 Keep your head up after meals.
o Lying down after meals will only make your discomfort worse.

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
If you are underweight or losing weight too quickly, choose foods that are rich in
nutrients and calories.
o Try to have a source of protein with each meal and snack. Some examples of
protein-rich foods include eggs, chicken, fish, meat, milk, yogurt, cheese, beans,
nuts, and peanut butter.
o Add extra calories, protein, and healthy fats to foods you already eat to help
prevent weight loss. Try adding olive oil, nuts, nut butters, seeds, non-fat
powdered milk, or protein powder to recipes.
o Drinking nutrient-rich liquids like smoothies or milkshakes can provide nutrition
without making you feel full. Liquids leave the stomach more quickly than solid
foods.
o Ask a registered dietitian if drinking a liquid nutrition supplement is needed to
provide necessary calories and protein. If needed, a specific liquid nutrition
supplement can be recommended that meets your needs.

Gas and Bloating

Excess gas is a common side effect, especially for colorectal and stomach cancer patients.
Foods, drinks, behaviors, and medications contribute to gas. These tips may help with the
pain, bloating, and discomfort that come with excess gas.
 Avoid gas-forming foods.
o Avoid broccoli, cauliflower, Brussels sprouts, cabbage, corn, turnips, onions,
peas, peppers, radishes, garlic, cantaloupe, watermelon, apples, avocados,
beans, lentils, and nuts.
o Avoid dairy products such as milk cheese or yogurt.
o Avoid carbonated beverages.
 Avoid behaviors that cause you to swallow extra air.
o Eat slowly.
o Do not suck on ice or candy.
o Do not chew gum.
o Do not drink through a straw.
o Drink liquids slowly with small sips.

Insomnia and Difficulty Sleeping
Many cancer patients report that they occasionally have trouble sleeping or that they can’t
sleep at all (insomnia). Lack of sleep can lead to other issues such as fatigue, loss of
concentration, headaches, and irritability.

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To minimize the impact of insomnia, focus on these three possible solutions: managing other
side effects of cancer or treatment, creating a good sleep routine, and talking to your
healthcare team.
Manage other side effects.
Some side effects of cancer treatment can lead to difficulty sleeping. If you can minimize those
side effects, then your sleep may improve.
Nausea
Nausea may make it difficult for you to go to sleep, and vomiting may wake you up at night.
 Sleeping with your head slightly elevated may help you get more comfortable.

If your doctor has prescribed medication for nausea, make sure you take it as
recommended, especially before bedtime.
Pain
Any type of pain can keep you up at night and make it difficult to be comfortable.
 Make sure you take pain medication as recommended, especially before bedtime.
 For more information on managing pain, read the pain management section of this
handbook.

Weight Gain
If you gained weight as a result of cancer treatment, you may have trouble falling asleep and
staying asleep. The extra weight can make it difficult to get comfortable. It can also make
sleeping more difficult because your body has to work a little harder to function normally, such
as regulating breathing.
 Try using a body pillow to give you more sleeping positions.
 Read the weight gain section of this handbook for more information on how to maintain
a healthy weight.
Hormonal Changes
Hormonal changes, such as menopause for women, can disrupt sleep, especially with side
effects such as hot flashes and night sweats. Talk to your healthcare team about the best ways
to manage hormonal changes. Your doctor may be able to prescribe medications to help
manage hormonal changes.
 Cool temperatures can help promote sleep. Make sure your bedroom thermostat is set
low and that your pillowcase feels cool to your skin.

If night sweats are a problem, buy wicking sleepwear to keep you dry at night.
Stress and Anxiety
Stress and anxiety can keep you up at night. It may feel difficult to “turn off your brain.” Finding
ways to cope with your stress and anxiety is very important.

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 Enjoy a relaxing activity every night before bed to take your mind off cancer. Try
working on a crossword puzzle, reading a book, or listening to music.
 Try simple stretches, yoga, or meditation to clear your mind.
At any point in your cancer journey, you may wish to seek emotional support. Support groups,
peer matching programs, or individual counseling may help relieve stress and anxiety.
Create a good sleep routine.
Try to create a comfortable and relaxing sleep routine. For example, every night before bed
take a hot bath or read a few chapters of a good book. If you do this every night, it will signal to
your body that it is time for sleep. The most important thing is that this routine works for you.
Here are some tips to get you started:
Tips for creating relaxing sleep environment:
 Make sure your mattress, bedding, and pillows are comfortable for you.
 Pleasant smells, like lavender, may help you sleep. Try an aromatherapy mist on your
pillow.
 Buy a fan or white noise machine to drown out other distracting noises.
 Turn out all the lights, and use blinds or curtains to cover the windows.
 Do not leave the TV or computer on while you are trying to fall asleep.
 Silence all call, email, and text alerts on your phone.

Tips for sleeping through the night:
 Try to go bed and wake up at the same time each day.
 Choose a small snack, not a large meal, before bed.
o Digestion may wake you up, but a small snack will keep you from getting hungry
during the night.
 Use the restroom right before going to bed.
 Exercise during the day, but do not exercise right before bed.
 The buildup of adrenaline and endorphins from exercise makes it difficult to wind down.
 Limit daytime naps to no more than 30 minutes.
 Avoid caffeine, alcohol, and tobacco products.

Talk to your healthcare team.
Always talk to your healthcare team if you are having insomnia or difficulty sleeping. Your
doctor may recommend prescription medications or over-the-counter sleep aids to help you fall
asleep and stay asleep. Do not take any medications without consulting your healthcare team
first. Some sleep aids can be habit-forming so only take these medications as directed by your
doctor.



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Lactose Intolerance
Lactose intolerance occurs when the body cannot digest milk sugar (lactose). Some patients
experience lactose intolerance, with symptoms like diarrhea, gas, and stomach cramps after
having dairy. These tips may help to relieve symptoms.
 Avoid dairy products and foods containing lactose and instead choose lactose-free or
reduced lactose milk products.
o Most grocery stores sell lactose-free milk and ice cream.
o After checking with you doctor, consider trying products made with soy or rice
instead. Soy milk, rice milk, and almond milk are available at most grocery
stores.
o Yogurt with live active cultures and hard cheeses such as parmesan and aged
cheddar are lower in lactose. You may find these to be better tolerated and less
likely to cause symptoms
o Avoid using butter, margarine, cream, or soft cheeses when cooking or preparing
foods.
 Read labels carefully.
o Avoid foods that have been prepared with milk, butter, milk solids, cream, casein,
or whey.
o Avoid products with ingredient lists that say “May contain milk”.
 Talk to your doctor about using over-the-counter enzymes.
o Lactase enzyme products are available in capsule, liquid, or pill form.
o Taking these enzymes with your meal may help you to digest the lactose in milk
and prevent symptoms.
 Choose other calcium-fortified or high-calcium foods.
o Read labels to find foods that have been fortified with calcium to ensure you are
meeting your calcium needs.
o There are many ways to meet your calcium needs from foods other than dairy
products. Other good sources of calcium include leafy green vegetables,
broccoli, fortified orange juice, fortified cereals, canned salmon, tofu, almonds
soy beans, and white beans.
o Talk with your physician or a registered dietitian about whether you could benefit
from taking a calcium supplement.
 Symptoms of lactose intolerance may improve overtime after treatment ends, but
sometimes it can be a long-term problem.




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Loss of Appetite
Loss of appetite interferes with good nutrition before, during, and after treatment and can
contribute to dangerous weight loss. The following are some tips to optimize nutrition while
dealing with appetite loss.
 Manage any other nutrition related side effects that may contribute to appetite loss.
o Nausea, vomiting, diarrhea, constipation, dry mouth, sore mouth, swallowing
difficulty, and heartburn may lead to loss of appetite.
o Talk to a registered dietitian and your healthcare team for assistance with any of
these side effects. It is important to get help managing any of these side effects
to increase appetite.
 Take note of when your appetite is best.
o For some people this is in the morning and appetite diminishes throughout the
day. For other people it may be the opposite.
o When you feel well, eat as much nutritious food as possible in case you do not
feel well later.
o Do not limit or restrict food intake when appetite is good.
 Eat 5-6 small meals per day and snack anytime.
o Small amounts of food are typically easier to digest and are easier on the
stomach. It is often easier to better meet nutrition needs while battling appetite
loss with smaller amounts of food more frequently.
 Keep healthy snacks around, and do not go more than three hours without eating.
o Pack a cooler or insulated lunch bag to take on longer trips or to appointments
when the wait time is variable.
o Keep small containers of fruit, dried fruit, trail mix, small bottles of juice, yogurt,
cheese, whole grain crackers, cereal, granola bars, and other portable food items
that are easy to eat and require little to no preparation.
o Always keep snacks visible and available as a reminder that it is important to eat
to get the body the nutrients it needs.

If food is not appealing, have a nutritious beverage instead.
o A high-protein shake or smoothie can have as many calories as a small meal or
large snack.
o Have a ready-to-drink liquid nutrition supplement when food is not appealing.
o Milkshakes, smoothies, or protein shakes can be made with yogurt, milk, ice
cream, protein powder, fruit, and other ingredients using a blender. Have these
ingredients available for times when a drink sounds better than a meal.
 Drink liquids between meals.
o Sometimes drinking liquids with meals causes the stomach to get full faster. This
prevents eating enough and maximizing nutrition from food sources.

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o If an early feeling of fullness is a problem, try waiting to drink any liquids until
after a meal and do not drink any liquids for at least 30 minutes before a meal.
 Add calories and protein to foods to give their nutrient content a boost.
o There are ways to add protein and calories to foods that are already eaten
regularly.
o Add a scoop of protein powder to a shake or smoothie.
o Add healthy fat such as olive oil, nuts, or nut butter to recipes and other dishes to
boost the calorie content.
o Ask a registered dietitian for other suggestions on how to increase the protein
and calorie content of foods.
 Exercise or do some physical activity at least an hour before a meal.
o Always check with your doctor before beginning and exercise program.
o Regular exercise may help increase appetite.
o Go for a 20-minute walk before sitting down to a meal.
 Get in the habit of having a bedtime snack.
o An easy-to-digest snack such as yogurt and fruit, cheese and crackers, or peanut
butter and crackers is an easy way to get some additional nutrition and will not
impact appetite for the next meal.
o If reflux or heartburn is an issue, have this snack at least one hour before lying
down.
 Emotions are often related to appetite. Talk to your healthcare team about managing
your emotional well-being.
o Depression, anxiety, fear, and stress can all affect appetite.
o Trained health professionals such as social workers and psychologists can assist
in managing these emotions.
o Support groups are another resource that may help in processing these
emotions.

Nausea
Nausea and vomiting are common side effects of cancer treatment that can cause
dehydration, poor nutrition, and weight loss. Follow these tips to control nausea and vomiting.
 Take anti-nausea medications as prescribed by your healthcare provider.
o It is important to take anti-nausea medications as prescribed.
o Do not wait until the onset of nausea to take medication.
o It is best to attempt to keep nausea managed with medication to allow for
consistent eating and optimal nutrition.
o Call your healthcare provider if you are taking the medication as prescribed and it
is not providing any relief. A different medication may be needed.
 Track nausea to determine causes and trends.

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o Some nausea may be directly related to chemotherapy.
o It is beneficial to know how soon after chemotherapy the nausea begins.
Sometimes it is immediate and other times the onset is delayed.
o Tracking may help to identify other triggers or causes of nausea.
 Keep odors to a minimum.
o Odors can lead to nausea so it is best to choose foods with little or no odor such
as oatmeal, cereals, canned fruit, shakes, and smoothies.
o When preparing food at home, opt for foods with short cooking times and minimal
odor such as pancakes, scrambled eggs, reheated soup, or other prepared foods
that just require reheating.
o Cool and room temperature foods usually have fewer odors than hot food.
o Avoid cooking foods that have long cooking times such as casseroles, meats,
and slow cooked meals.
o Ask friends or family members to cook these items in an alternative location like
a neighbor’s kitchen.
 Eat several small meals or snacks during the day.
o Eating small meals or snacks 5-6 times per day instead of 2 or 3 larger meals
may help with nausea management. This keeps the stomach from getting too
empty and prevents excess stomach acid.
o Chew all foods very well. The digestion process begins in the mouth.
o Keep bland, odorless snacks on hand for easy meals and snacking. Some
examples are crackers, cheese, canned fruit, yogurt, toast, rice, and pasta.
o Not all foods are appealing to everyone. The key is to find the foods that are
tolerable and stock up on those.
 Create a relaxing environment for eating and snacking.
o Lighting, temperature, and other external cues may make nausea worse.
o Dim lighting and cooler temperatures tend to be better for nausea management.
o The use of a fan or ceiling fan may also make a difference.
o It is important to be removed from situations that contribute to anxiety when
attempting to enjoy a meal or a snack. (i.e. loud voices, arguing, loud music, or
non-relaxing television programs).
o Soft relaxing music, a relaxing television program or another activity that is
relaxing in a cool, dim room may be the best environment for meals and snacks.
o Rest after meals but do not lie flat as this may trigger nausea.
 Experiment with different foods.
o Everyone is an individual and not all foods work for everyone when nausea is an
issue. Try to be patient and experiment with different foods.
o Start with bland foods with minimal odor and introduce them one at a time.
 Avoid foods and behaviors that tend to trigger nausea.

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o Some foods are triggers for nausea for unexplained reasons. Some of these
reasons may be psychological. It is best to avoid these foods for optimal nutrition.
The time that it takes to recover from an episode is time that the body is missing
out on good nutrition.
o Foods that are harder to digest and stay in the stomach longer can be triggers for
nausea. These foods are usually higher fat foods such as fried foods and foods
prepared with a lot of butter or oil.
o Spicy foods are usually not tolerated well.
o Some behaviors such as eating in a restaurant may trigger nausea. If this is the
case, order food to carry out and eat it in a more relaxing environment.
o Caffeine and smoking contribute to nausea.
o Limit or avoid smoking, and drink only decaffeinated beverages.
 Try foods and drinks containing ginger.
o Ginger is a spice that has shown some promise for relief from nausea.
o Ginger snaps, ginger ale, ginger gum, or ginger tea may be options that can help
manage nausea.
o Ginger is also common in some Asian recipes.
o Ginger supplements are available; however, they have not been studied
extensively to determine an effective dose.
 Avoid drinking while eating.
o Sometimes excess liquid in the stomach contributes to nausea.
o It is best to drink any beverages at times other than meal times.
o The best beverages to choose are water, 100% fruit juices without added sugar,
and caffeine-free soda that no longer has carbonation.
o Ginger ale specifically may help with nausea.
 Wear loose-fitting, comfortable clothing.
o Clothing that is tight especially around the midsection can trigger nausea.
o Soft, comfortable fabrics tend to be more relaxing as well.
 Stay hydrated if vomiting occurs.
o Continue to drink clear liquids including water and other electrolyte containing
beverages like sports drinks.
o Attempt to eat bland foods such as crackers or toast.
o If vomiting is continuous and cannot be controlled, contact your healthcare
provider immediately.

Pain
Cancer and Pain
Pain related to cancer comes in many different forms. Pain can be caused by the cancer itself,
or it can be a side effect of treatment.

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For the best pain management, you and your healthcare team will first need to find out the
cause of your pain. Be prepared to answer these questions:
 How severe is your pain?

Is there anything that makes it better?

Is there anything that makes it worse?
 What does it feel like—an ache or a sharp pain, dull, throbbing, or tingling?

Is the pain in only one part of your body?
 How does the pain interfere with your daily life?
Keeping a pain journal can be helpful. Use the Treatment and Side Effects Log included in this
handbook.
Is the pain a side effect of treatment?
Chemotherapy, radiation, and surgery are the three most common cancer treatments, and pain
is a potential side effect for all three. However, the type of pain caused by each is different.
Chemotherapy can cause the following types of pain: muscle and joint aches, mouth sores,
headaches, and neuropathy. Neuropathy is an unpleasant tingling or numbness, usually in the
hands or feet. Damage to nerve endings causes this feeling.
Radiation causes the skin at the treatment site to become dry, red, and painful like a mild to
moderate sunburn. Sometimes these burns blister. Depending on the location of radiation,
there may be other side effects. For example, radiation to the brain may cause headaches.
Surgery causes pain at the incision site. Depending on the extent and location of the surgery,
this pain could be mild to severe. Surgery can damage muscles and tissues leading to range of
motion problems. Surgery can also damage nerves and cause neuropathy.
Is the pain a side effect of the cancer itself?
Depending on size and location of the tumor, pain could be from the cancer itself. If the tumor
is pressing on nerves, joints, or bones, it can cause pain. This type of pain is more common
with advanced or metastatic cancer, especially when the cancer spreads to the bones. Tumors
in the bones can cause fractures as the tumors continue to grow.
Pain Management Plans
Your healthcare team can help create the best pain management plan for you. If the first plan
you try does not work, tell your healthcare team. You may need to try a different plan. Open
and honest communication with your healthcare team is very important. Pain is a difficult side
effect to treat. It may take a few tries to find the best plan for you. Do not be afraid to seek a
second opinion if needed.
Your pain management plan may include:
Pain Medications
Your doctor may prescribe pain medications or suggest over-the-counter pain medications.
Ask your doctor before taking any over-the-counter medications. Some pain medications can
cause nausea or constipation. Your doctor may be able to suggest additional medications to

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help with these side effects. You may have to try a few different types of medications or
dosages to find what works for you.
Physical Therapy
Physical therapy uses exercises to help improve strength and motion. If your pain is related to
loss of range of motion or difficulty doing physical activities such as walking, physical therapy
may help ease pain.
Exercise
Regular exercise, even something as simple as a daily walk, may also help with
pain. Exercising is good for the body. It can also make you feel better mentally too. Exercising
releases endorphins, natural chemicals that make you feel happier. Exercising also combats
fatigue which is a common side effect along with pain. Always ask your doctor before
beginning an exercise plan.
Complementary and Alternative Medicine
Some cancer patients find success at relieving pain with complementary and alternative
medicine (CAM) such as acupuncture, guided imagery, massage, supplements and vitamins,
or yoga. The phrase “complementary and alternative medicine” means treatments outside the
standard scope of what you would find at a hospital or treatment center. Complementary
medicine is used along with standard treatment. Alternative medicine is used instead of
standard treatment.
Always discuss the pros and cons of each treatment you consider with your healthcare team. If
you are considering a complementary treatment, inform your medical team BEFORE you are
treated to make sure it will not negatively interact with your standard treatment. If you are
considering quitting standard treatment for an alternative treatment, remember: standard
treatments go through a long and careful research process to ensure that they are safe and
effective, but less is known about most types of CAM.
For more information on CAM, visit the National Center for Complementary and Alternative
Medicine website.
Palliative Care
Palliative care provides relief from pain and other symptoms, but it does not provide a cure.
For cancer patients, common palliative therapies include surgery, radiation, or chemotherapy
as a method of shrinking tumors that are causing pain. Palliative care is most commonly used
for advanced or metastatic cancers.
Emotional Support
Taking care of your emotional well-being can also help manage pain. There are a number of
ways to find emotional support—peer partnering programs, support groups, and one-on-one
counseling.
Your doctor may even prescribe antidepressants, which have been shown to help with nerve
pain as well as emotional well-being.
Managing Other Side Effects

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Other side effects of treatment, such as fatigue, nausea, or loss of appetite, may be making
your pain worse. You may be able to manage many of these side effects with simple nutrition
and habit changes.

Reflux, Heartburn, and GERD
Heartburn, reflux, and GERD (gastroesophageal reflux disease) may occur during cancer
treatment. Cancer treatments or medications may affect parts of your digestive tract and cause
the food and liquids in your stomach to reflux (travel back) into your esophagus (food pipe).
Patients with reflux may have symptoms such as swallowing difficulty, a sore throat, sour taste
in your mouth, heartburn and painful digestion.
Talk with your healthcare team for the best care for reflux. Here are some tips and guidelines
to help control reflux:
 Go small.
o Eat 5-6 small meals or snacks throughout the day. Smaller amounts of food are
easier for the body to digest and absorb.
o Smaller amounts of food also mean there is less food that can travel back up the
food pipe.
 Choose lean.
o Avoid fried and fatty foods. These foods are hard to digest and stay in your
stomach for a long time. Time increases risk for reflux.
o Choose baked, broiled, or grilled foods instead.
 Dress for comfort.
o Wear loose-fitting clothes, especially clothes that are not tight around your
stomach.
o Clothes that are tight around the stomach can trigger reflux.
 Avoid smoking and alcohol.
o Smoking cigarettes (including e-cigarettes) and drinking alcohol can trigger
reflux.
o Instead of after-dinner drinks and cigarettes, chew sugarless non-mint gum for 30
minutes after meals. This encourages food to move through your digestive
system.
 Sit up.
o Pay attention to your posture.
o Sit up at least 1 hour after eating.
o Good posture helps your breathing and may reduce fatigue during eating.
o Raise the head of your bed 6 to 9 inches by putting wooden blocks under the
legs of the head of your bed.
 Slow down.
o Eat slowly and chew food really well. Digestion begins in the mouth.
o Smaller food pieces are much easier to digest and are less likely to cause
discomfort.
o Meals eaten in calm, relaxed place seems to be better digested.

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o Added stress from treatment can also trigger reflux; try to eat when you are
feeling most relaxed.
 Choose well.
o Some specific foods and drinks may cause reflux symptoms.
o Some common problem foods and drinks may be: chocolate, cocoa, mint, whole
milk, caffeine, pepper, some fruits/juices, pastries and other high-fat desserts.
 Write it down.
o Record in a log the times you eat, the foods and drinks you consume, and any
reflux symptoms.
o If you eat a large portion of a problem food, you may have symptoms. Try a small
portion and take notes in your log. Use your log to eliminate items that cause
reflux symptoms.
o Avoid “problem foods” for a couple of days to see if symptoms disappear.
 Avoid eating before bed.
o Avoid eating too close to bedtime.
o Have your last food or drink 1-3 hours before you recline.
o If still having trouble sleeping due to reflux, you may need to raise the head of the
bed so that gravity helps keep food down in the stomach.
 Ask for help.
o Consult a local registered dietitian for specific recommendations based on your
level of food tolerance.
o Talk to your healthcare team if symptoms persist or get worse.

Sexual Side Effects
Female Sexual Side Effects
Many female cancer patients experience sexual dysfunction or changes in their sex lives after
a cancer diagnosis. These changes can be physical or mental. Many women are not
comfortable discussing these issues with their healthcare team or with their partners, but being
able to speak openly is important.
Each type of cancer treatment—chemotherapy, radiation, surgery, and hormonal therapy—can
cause possible sexual side effects. Side effects may vary depending on the type of cancer, the
specific mode of treatment, and the individual’s response to treatment. Talk to your healthcare
team about what you should expect from treatment.
Managing Side Effects
Below are some of the most common sexual side effects and tips for managing each.
Lack of Desire
During and after cancer treatment, many women report a lack of sexual desire. Lack of desire
may come from hormonal changes such as early menopause or other side effects, making sex
unenjoyable.
 Rethink what sex and intimacy mean.

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o Do not expect sex after cancer to be exactly the same as sex before cancer.
Your body has been through a lot of changes.
o Be patient. It may take some time to discover what is comfortable and
pleasurable for you.
o Ask your doctor about estrogen therapies to increase estrogen and if they are
safe for you to use.
 Low levels of estrogen can cause female sexual dysfunction.
o Estrogen therapies can help with lack of desire and dryness.
o Estrogen therapies come in pills, creams, patches, and vaginal rings.
o If your cancer is hormone driven, estrogen therapy may not be safe for you.

If you are taking anti-depressants or pain medication, talk to your doctor about adjusting
your dosage.
o Both these medications can cause lack of desire.
 Manage other side effects such as dryness, pain, nausea, or fatigue that may be
causing your lack of desire.
Dryness
Early menopause, triggered by chemotherapy, adjuvant therapies, or surgery, can cause
vaginal dryness. Radiation to the pelvic region can also cause dryness.
 Use a water-based lubricant during sex.
o Stay away from scented and warming lubricants. These can irritate the vagina,
actually making dryness worse.
o Do not use petroleum jelly based lubricants.
 Try vaginal moisturizers to improve overall dryness.
o Vaginal moisturizers are different from lubricants. You do not use them only
during sex. If used regularly, they improve overall dryness and vaginal health.
 As mentioned above, ask your doctor about estrogen therapies and if they are safe for
you to use.
Pain
Pain during intercourse may occur for a few reasons such as dryness or scar tissue. Radiation
to the pelvic region may cause minor burns as well as scarring that causes the vaginal canal to
shrink. Gynecological surgery can damage or result in the removal of sex organs.
 After surgery, ask your doctor if and when it is safe to have sex.

If the shape of the vagina has changed from treatment, you may need to adjust the way
you have sex by trying new positions or new activities.
 After gynecological surgeries that affect the vagina, reconstructive surgery may be an
option.
 A vaginal dilator can be used to stretch the vaginal canal. Vaginal dilators are smooth
plastic cylinders of different widths. By beginning with the smaller ones and inserting
them into the vaginal canal regularly, the vagina begins to stretch, making intercourse
less painful. Vaginal dilators also make medical pelvic exams more comfortable.
 Pain may come from dryness. If you are also experiencing dryness, try the tips above.

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General pain in other parts of the body can also make sex uncomfortable and decrease your
desire to be intimate.
Difficulty Reaching Climax or Orgasm
Surgery and other treatments that directly affect the pelvic region can result in loss of
sensation if nerves are damaged. This can make achieving an orgasm difficult for some
women. Actions that worked before treatment may no longer feel the same. Other side effects
mentioned in this article such as pain, lack of desire, and emotional issues can also make
achieving orgasm difficult.
 Work on managing all of side effects that may be affecting your sex life.
 For most women, vaginal penetration does not provide enough stimulation for orgasm.
Extended clitoral stimulation may be needed.
 Use your mind. Make sure you are comfortable and in the right mindset for sexual
activity. Try imaging sexual fantasies to get in the mood.
 Try using a vibrator to increase stimulation. Vibrators can be purchased at a drug store
or discreetly online.
Managing Non-Sexual Side Effects
Other treatment side effects, such as nausea and fatigue, may interfere with your sex life.
Read the other side effects managements sections of this handbook to get all your side effects
under control.
Self-Esteem and Body Image
How you feel about yourself can affect your sex life. Cancer and cancer treatment can cause
significant changes to your body. You may have hair loss, weight loss, weight gain, or scars.
With these changes, you may not feel the same way about your body. This is all normal. Do
not be critical of yourself. Your body battled cancer.
Below are tips for managing issues related to self-esteem and body image:
Hair Loss
 Hair usually grows back after treatment ends.

In the meantime, try wigs, hats, and scarves.
 When your hair does begin to grow back, use a gentle shampoo such as baby
shampoo.
Weight Changes
 Talk to your healthcare team about reaching and maintaining a healthy weight.
 Ask your healthcare team if it is safe for you to start an exercise program.
o The endorphins released during exercise can also make you feel better
emotionally.


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Surgical Scars
 Most surgeries leave some scars. Try using over-the-counter lotions and gels to help
minimize incision scars. Moisturizers made with cocoa butter also minimize scars.
 After surgery for colorectal, anal, or bladder cancer, some women need temporary or
permanent ostomies.
o After healing from surgery, you can have sex with an ostomy. To learn more
about this, visit the United Ostomy Associations of America at ostomy.org.
Emotional Support
You have to care for your mental health as well as your physical health. If you are struggling
with anxiety or sadness, you probably don’t feel like having sex. Some options for emotional
support include: peer partnering programs, support groups, and one-on-one counseling.
Fertility
Cancer treatments can lead to infertility. Gynecological surgery can cause infertility.
Chemotherapy and adjuvant therapies can trigger early menopause in women. Even though
this process sometimes reverses in young women, it can still make conceiving difficult.
Radiation to the pelvic area can damage reproductive organs.
Women do have options to preserve their fertility. However, it is important to talk to your
healthcare team about fertility and your options before you begin treatment. Many fertility-
preserving options must be done before the damage caused by treatment occurs.
Before beginning treatment, some women freeze and bank eggs and embryos. Fertility-
preservation can be a long process so you will need to factor this into your timeframe for
treatment.
Some steps can be taken to protect reproductive organs during treatment. For example, during
radiation treatment, depending on the area receiving radiation, you may be able to use a
shield.
If you continue to have sex during treatment, be sure to use proper protection. Pregnancy
during chemotherapy or radiation is not safe for the mother or the child. Even if your periods
stop during treatment, you may still be able to conceive so always use a form of birth control.
Some cancers may affect your ability to use hormonal birth control methods, such as oral
medication and devices such as IUDs and hormone rings. Make sure you ask your doctor
before resuming any birth control you used before your diagnosis. Since cancer treatment can
compromise your immune system, be sure to always use condoms to protect against sexually
transmitted diseases (STDs).
Talk to your healthcare team as soon as possible about your fertility status and options.
Talking to Your Partner About Sexual Dysfunction
Being able to talk openly with your partner about sex is very important. What worked for you
both before cancer may not work now. You may need to try different things to find what works
for you both. If it has been a while since you’ve been intimate, start slowly with simple kissing
and touching. Here are some basic guidelines for talking to your partner:

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 Be honest.
 Always tell your partner if something hurts or is uncomfortable.

If something feels good, let your partner know.
 Be patient with yourself and your partner.
 Set the scene by going on a romantic date or watching a movie together at home.
Talking to Your Healthcare Team About Sexual Dysfunction
Your healthcare team is made up of health professionals. You should feel comfortable telling
them anything. There is nothing embarrassing about sexual dysfunction, as it can happen
following cancer and its treatment. After fighting cancer, you deserve to have a healthy sex life.
You may wish to talk to healthcare professionals who specialize in areas related to sexual
dysfunction including:
 Gynecologist
 Endocrinologist
 Sex therapist
 Psychologist or counselor
Talking about sexual dysfunction can be difficult. Here are some sample questions to begin
your conversation with your doctor:
 How will treatment affect my sex life?
 What can I do to manage sexual side effects?

I have pain and dryness during sex. What can I do to manage this?

I no longer feel any desire to have sex. What can I do to feel like myself again?
 Could you recommend a specialist?
 Will treatment affect my fertility?
Male Sexual Side Effects
Many male cancer patients experience sexual dysfunction or changes in their sex lives after a
cancer diagnosis. These changes can be physical or mental. Many men are not comfortable
discussing these issues with their healthcare team or with their partners, but being able to
speak openly is important.
Common Side Effects of Treatment
Each type of cancer treatment—chemotherapy, radiation, surgery, and hormonal therapy—can
cause possible sexual side effects. Side effects may vary depending on the type of cancer, the
specific mode of treatment, and the individual’s response to treatment. Talk to your healthcare
team about what you should expect from treatment.
Below are some of the most common side effects of each treatment type that causes sexual
dysfunction.



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Surgery

Surgery to the pelvic area can lead to the following:
 Damage to blood vessels or nerve endings resulting in difficulty having and keeping an
erection, known as erectile dysfunction or impotence
 Loss or damage of sexual organs

Infertility
 Orgasms that do not result in ejaculation
After surgery, ask your doctor if and when it is safe to have sex.
Chemotherapy
Chemotherapy does not usually directly affect sexual function, but the side effects of
chemotherapy, such as nausea and fatigue, may lead to loss of sexual desire. Chemotherapy
can also cause infertility. Men who plan to try to father children should ask a doctor about
fertility preservation before beginning treatment.
Radiation
Radiation to the pelvic region may cause the following side effects:
 Damage to blood vessels or nerve endings leading to erectile dysfunction
 Redness and pain at the treatment site
 Fatigue which may lead to loss of desire

Infertility
Managing Side Effects
Below are tips for managing the most common side effects related to sexual dysfunction in
men.
Erectile Dysfunction
Erectile dysfunction can be either mental or physical. Your doctor can do a test to determine
the cause. If the cause is mental, see the suggestions below for managing emotional issues. If
the cause is physical, you have several options.
 Prescription medications can treat erectile dysfunction by increasing blood flow to the
penis. (If erectile dysfunction is caused by nerve damage, medications such as these
will not help.) Common medications include:
o Sildenafil (Viagra)
o Tadalafil (Cialis)
o Vardenafil (Levitra, Staxyn)
 Penile injections are shots delivered before sex into the penis to help cause and sustain
an erection. Your doctor may wish to do a practice injection at a healthcare office to
make sure they work for you.

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 A vacuum constriction device (or pump) is a plastic tube placed over the penis. Air is
then pumped out of the device, creating suction. This suction causes more blood to flow
to the penis.
 Penile implants are prostheses (artificial devices) surgically placed inside the penis to
help create an erection. There are three main types of penile implants:
o A semirigid penile implant is a flexible rod placed inside the penis that can be
bent up or down.
o A two-piece penile implant is made up of an inflatable cylinder inside the penis
and a pump inside the scrotum.
o A three-piece penile implant is made up of an inflatable cylinder inside the penis,
a pump inside the scrotum, and a fluid supply in the abdomen.
 Being overweight may also cause erectile dysfunction. If you have gained weight during
treatment, read Nutrition Tips for Managing Weight Gain.
Talk to your healthcare team about which of these options may be best.
Lack of Desire
During and after cancer treatment, many men report a lack of sexual desire. Lack of desire
may come from hormonal changes or from other side effects that make sex unenjoyable.
 Rethink what sex and intimacy mean.
o Do not expect sex after cancer to be exactly the same as sex before cancer.
Your body has been through a lot of changes.
o You most likely will still be able to reach orgasm. Depending on your treatment
type, orgasms may no longer result in ejaculation, or you may have difficulty
reaching orgasm.
o Be patient. It may take some time to discover what is comfortable and
pleasurable for you.

If you are taking anti-depressants or pain medication, talk to your doctor about adjusting
your dosage.
o Both these medications can cause lack of desire.

If low testosterone is causing your lack of desire, you may be able to take testosterone
supplements. Talk to your healthcare team about your options.
 Other treatment side effects such as nausea, fatigue, and pain may interfere with your
sex life.
o Use the other side effect management sections of this handbook to help manage
other side effects.
Self-Esteem and Body Image
How you feel about yourself can affect your sex life. Cancer and cancer treatment can cause
significant changes to your body. You may have hair loss, weight loss, weight gain, or scars.
With these changes, you may not feel the same way about your body. This is all normal. Do
not be critical of yourself. Your body battled cancer.
Below are tips for managing issues related to self-esteem and body image.
Hair Loss

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 Hair usually grows back after treatment ends.

In the meantime, try a hat, bandana, or cap.
 When your hair does begin to grow back, use a gentle or baby shampoo.
Weight Changes
 Talk to your healthcare team about reaching and maintaining a healthy weight.
 Ask your healthcare team if it is safe for you to start an exercise program.
o The endorphins released during exercise can also make you feel better
emotionally.
Surgical Scars
 Most surgeries leave some scars. Try using over-the-counter lotions and gels to help
minimize incision scars. Moisturizers made with cocoa butter also minimize scars.
 After surgery for colorectal, anal, or bladder cancer, some men need temporary or
permanent ostomies.
o After healing from surgery, you can have sex with an ostomy. To learn more
about this, visit the United Ostomy Associations of America at ostomy.org.
Emotional Support
You have to care for your mental health as well as your physical health. If you are struggling
with anxiety or sadness, you probably don’t feel like having sex. Some options for emotional
support include: peer partnering programs, support groups, and one-on-one counseling. Other
patients are often great resources for men experiencing sexual side effects of cancer. It can be
difficult to talk about these issues, but having someone who has experienced the same journey
can be beneficial.
Fertility
Cancer treatments can lead to infertility.
Men do have options to preserve their fertility. However, it is important to talk to your
healthcare team about fertility and your options before you begin treatment. Many fertility-
preserving options must be done before treatment begins. Before beginning treatment, some
men can freeze and bank sperm. Talk to your healthcare team as soon as possible about all
your options and your fertility status.
If you continue to have sex during treatment, be sure to use proper protection to protect
against unplanned pregnancies and sexually transmitted diseases. Since cancer treatment can
compromise your immune system, be sure to always use condoms to protect against STDs.
Talking to Your Partner About Sexual Dysfunction
Being able to talk openly with your partner about sex is very important. What worked for you
both before cancer may not work now. You may need to start slowly and try different things to
find what works for you both. If it has been a while since you’ve been intimate, start slowly with
simple kissing and touching. Here are some basic guidelines for talking to your partner:

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 Be honest.
 Always tell your partner if something hurts or is uncomfortable.

If something feels good, let your partner know.
 Be patient with yourself and your partner.
 Set the scene by going on a romantic date or watching a movie together at home.
Talking to Your Healthcare Team About Sexual Dysfunction
Your healthcare team is made up of health professionals. You should feel comfortable telling
them anything. There is nothing embarrassing about sexual dysfunction, as it can happen
following cancer and its treatment. After fighting cancer, you deserve to have a healthy sex life.
You may wish to talk to healthcare professionals who specialize in areas related to sexual
dysfunction including:
 Urologist
 Endocrinologist
 Sex therapist
 Psychologist or counselor
Talking about sexual dysfunction can be difficult. Here are some sample questions to begin
your conversation with your doctor:
 How will treatment affect my sex life?
 What can I do to manage sexual side effects?
 Will I have difficulty having an erection? What can I do to manage this?

I no longer feel any desire to have sex. What can I do to feel like myself again?
 Could you recommend a specialist?
 Will treatment affect my fertility?
Sore Mouth, Throat, and Tongue

Some cancer treatments can cause mouth sores, ulcers, and tender gums, leading to
dehydration, poor eating, and weight loss. Follow these tips to manage sore throat, mouth, and
tongue.
 Choose soft, bland foods.
o Softer foods will be easier to chew and swallow.
o Soups and stews are good options, as long as meats are soft and tender.
o Try breakfast foods like instant oatmeal, grits, pancakes, waffles, and cold cereal
that has been softened in milk.
o Pick side dishes like cottage or ricotta cheese, macaroni and cheese, mashed
white or sweet potatoes, and rice or risotto.
o Try desserts like custard, tapioca pudding, ice cream, milkshakes, and sherbet.
o Choose snacks like applesauce, gelatin, smoothies, and yogurt.

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 Prepare foods in ways that make them easier to eat.
o Cut foods into small pieces. You may consider using a blender or food processor
to puree foods.
o Cook foods until they are soft and tender.
o Serve foods with gravy, broths, or sauces.
o Choose soft or canned fruits or applesauce instead of raw fruits with tough skins.
 Avoid foods and drinks that make mouth sores worse.
o Avoid citrus fruits and juices, salty or spicy foods, and acidic foods like tomatoes.
o Do not drink carbonated or caffeinated drinks.
o Refrain from having beer, wine, liquor, or any other type of alcohol.
 Avoid very hot foods.
o Hot foods can cause mouth and throat discomfort.
o Choose room temperature or cold foods that are soothing.
o Allow soups and hot foods to cool to room temperature before serving.
o Try freezing fruits, and suck on frozen fruit pops, fruit ices, or ice chips.
 Choose foods that are good sources of protein to combat weight loss.
o Aim to have a good source of protein with meals and snacks.
o Ground meats, eggs, cottage cheese, yogurt, custard, beans, lentils, and
smoothies are good soft food choices that also provide protein.
o Eat small, frequent meals. You may find it easier to eat smaller amounts at a
time.
 Drink at least 8-10 eight-ounce glasses of water each day.
o Drink liquids with your meals as this will make it easier to swallow foods.
o Sip cool drinks in between your meals.
o Drink with a straw. This can help push the foods past the painful sores in your
mouth.
o Avoid caffeinated or/and carbonated beverages.
o Avoid alcohol. Alcohol can irritate the mouth.
 Use good mouth care.
o Rinse your mouth several times a day. Mix ¼ tsp. of baking soda and 1/8 tsp. salt
with 1 cup warm water to make a rinse that removes food and promotes healing.
o Do not use a mouthwash that has alcohol. Alcohol makes a sore mouth worse.
o Use a toothbrush with soft bristles.
o Remove dentures (except during eating) if your gums are sore. Keep dentures
clean.
o Avoid cigarettes, cigars, and tobacco products.
o Ask your doctor about special mouthwashes and sprays that can numb the
mouth and throat.
o Tell your doctor if your gums are bleeding or if you have white patches in your
mouth. Both can be signs of infection.

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Weight Gain
Weight gain is common among cancer patients. This can be for a variety of reasons. The
following tips help maintain a healthy weight before, during, and after cancer treatment.
 Know the factors that can cause weight gain.
o Medication, hormone therapy, or chemotherapy can lead to weight gain.
o Fatigue and other side effects can cause decreased physical activity.
o Stress, fear, or depression can lead to changes in eating habits.
o Fluid retention causes swelling.
 Eat a variety of fruits, vegetables, whole grains, and beans.
o All of these foods are high in fiber and low in calories.
o Fiber helps you feel fuller longer.
 Choose whole grain foods.
o Whole grains also contain fiber and are a lasting energy source.
o Whole grain foods include whole grain breads, cereals, pasta, crackers, and
brown rice.
 Choose lean proteins.
o Protein foods also help you feel fuller longer.
o Lean proteins include eggs, fish, skinless chicken, turkey, lean beef, lean pork,
beans, and soy products.
 Choose low-fat or fat-free dairy products.
o Low-fat and fat-free dairy products contain the same amount of protein as regular
dairy products.
o Low-fat and fat-free dairy products include 1% or skim milk, low-fat yogurt and
reduced-fat cheese and cottage cheese.
 Limit foods high in fat and calories.
o High-fat foods like regular butter, creamy dressing and sauces, sour cream,
mayonnaise, fried foods, and dessert contain more calories and can contribute to
weight gain.
o Limit frequency and portions of high-fat foods and choose reduced-fat items
when possible.
o Avoid high-fat cooking methods, such as pan or deep frying. Broiling, steaming,
grilling, and roasting are recommended.
 Avoid high-calorie beverages.
o Avoid drinking large amounts of sugar-sweetened beverages such as sodas,
sports drinks, sweetened teas, lemonade, and sweetened fruit juice.
o Choose low-calorie, low-sugar beverage options such as water and unsweetened
tea.
o Limit or reduce alcohol consumption. If alcohol is consumed at all, it is best to
limit to no more than one drink per day for women and two drinks for men.

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 Avoid eating when you are not physically hungry.
o Listen to your body. Don’t confuse boredom or stress for hunger.
o Try making a list of alternate activities you can do when you have the urge to eat
when not hungry.
 Watch your portion sizes.
o Try measuring out your portions so you know exactly how much you are eating.
o Check the nutrition label to determine serving sizes.
o Choose to eat all meals and snacks off of a plate rather than out of the package
so you can keep track of how much you are eating.
 Limit eating out.
o Restaurants often serve large portions of higher calorie and higher fat foods.
o Limit eating out so you are not tempted with large portions of these foods as
often.
 Write down your intake.
o Studies show that those who record all of their food and drink intake eat less
calories than those who do not.
o Keeping a food journal could help keep you mindful about appropriate portion
sizes and urges to eat when not hungry.
 Try exercise.
o Aim for 30 minutes of exercise every day if able.
o Always discuss any changes in exercise with your physician.
 Always discuss weight gain with your physician.
o A physician can help determine the cause of weight gain and can give
recommendations for how to appropriately manage weight gain.
o Do not go on a diet to lose weight without discussing with your physician first.

Weight Loss
During cancer treatment, the body needs more calories and protein, especially when side
effects can make it difficult to eat. Follow these tips to increase intake.
 Eat small, frequent meals (5-6 a day) instead of 3 large meals.
o Eat every 2 to 3 hours even if you do not feel hungry.
o Set a timer to remind you it is time to eat. Eat the most when you feel hungriest.
o Eat protein foods like chicken, fish, meat, eggs, nuts, and beans first.
 Use smoothies and shakes to get in calories and protein.
o Liquids can be easier to consume than solid foods.
o Smoothies or shakes can serve as a small meal replacement.
o Add ingredients such as whole milk, powdered milk, protein powder, peanut
butter, ice cream, or yogurt to smoothies or shakes to add calories and protein.

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o Premade liquid nutrition supplements are available at grocery and drug stores.
Ask a registered dietitian which type is best for you.
o Ingredients such as whole milk, peanut butter, ice cream, yogurt, or fruit can be
added to liquid nutrition supplements.
 Add more fats to foods to increase the calories.
o Fat has more calories per gram than carbohydrates or protein.
o Use butter, oils, mayonnaise, sour cream, and salad dressings liberally.
o When cooking, use oil or butter instead of a nonstick spray.
o Add mayonnaise to sandwiches and tuna or chicken salad.
o Add peanut butter or cream cheese to toast or crackers.
 Drink most liquids between meals instead of with meals.
o Liquids such as water, juice, or soda while you eat can make you feel full faster.
o Drink only small amounts with meals.
o Drink higher calorie liquids like juice and milk between meals.
o Drink smoothies, shakes, and nutrition supplements with or in place of a meal.
 Snack regularly throughout the day.
o Keep quick and easy snacks with you.
o Try granola bars, trail mix, peanut butter crackers, nuts, and dried fruit.
o Keep your favorite snacks around so you will eat more.
o Eat a bedtime snack. It will not affect your appetite at your next meal.



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When you are faced with a cancer diagnosis, nutrition can be an important part of your
journey. Eating a well-balanced diet before, during, and after cancer treatment can help you
feel better, maintain your strength, and speed your recovery. Since colorectal cancer directly
affects the digestive system, colorectal cancer patients may have special nutrition concerns.
Use these tips about nutrition written by our registered dietitians.


I Have Colorectal Cancer. What Should I Eat?
How do I make the best food choices throughout cancer treatment?
When you are faced with a colorectal cancer diagnosis, nutrition can be an important part of
your journey. Eating a well-balanced diet before, during, and after cancer treatment can help
you feel better, maintain your strength, and speed your recovery.
 Maintain a healthy weight. Treatments such as chemotherapy, radiation, and surgery for
colorectal cancer can often contribute to unintentional weight loss. It’s important to avoid
excess weight loss during treatment as poor nutrition status can cause decrease the body’s
ability to fight infection.
 Eat small, frequent meals throughout the day. Eating frequent small meals will ensure
your body is getting enough calories, protein, and nutrients to tolerate treatment. Smaller
meals may also help to reduce treatment-related side effects such as nausea. Try eating
5-6 small meals or “mini” meals about every three hours.
 Choose protein-rich foods. Protein helps the body to repair cells and tissues. It also
helps your immune system recover from illness. Include a source of lean protein at all
meals and snacks. Good sources of lean protein include:
o Lean meats such as chicken, fish, or turkey
o Eggs
o Low fat dairy products such as milk, yogurt, and cheese or dairy substitutes
o Nuts and nut butters
o Beans
o Soy foods


Include whole grain foods. Whole grain foods provide a good source of carbohydrate and
fiber, which help keep your energy levels up. You may be asked by your doctor to avoid
whole-grains and high-fiber foods while an ostomy is in place because these foods can
increase output. Good sources of whole grain foods include:
o Oatmeal
o Whole wheat breads
o Brown rice
o Whole grain pastas
Nutrition

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 Eat a variety of fruits and vegetables every day. Fruits and vegetables offer the body
antioxidants, which can help fight against cancer. Choose a variety of colorful fruits and
vegetables to get the greatest benefit. Aim to eat a minimum of 5 servings of whole fruits
and vegetables daily.
 Choose sources of healthy fat. Avoid fried, greasy, and fatty foods, Choose baked,
broiled, or grilled foods instead. Healthy fats include:
o Olive oil
o Avocados
o Nuts
o Seeds

 Limit sweets and added sugars. Foods high in added sugars like desserts and sweets
provide little nutritional benefit and often take the place of other foods that are better for
you.
 Stay hydrated. Drinking enough fluids during cancer treatment is important for preventing
dehydration. Aim to drink 64 ounces of fluid daily. Avoid drinking large amounts of
caffeinated beverages. Too much caffeine can lead to dehydration.
 Be observant of changes in bowel habits. Colorectal cancer and treatments can often
lead to changes in bowel habits including diarrhea, constipation, bloating, and gas. It is
important for you to communicate with your healthcare team any changes in your bowel
habits. Changes in your diet or medications may be necessary to manage these side
effects.
 Practice good food safety. Wash your hands often while preparing food. Use different
knives and cutting boards for raw meat and raw vegetables. Be sure to cook all foods to
their proper temperature and refrigerate leftovers right away.
 Talk to your healthcare team before taking any vitamins or supplements. Some
medications and cancer treatments may interact with vitamins and supplements. Choose
food first as the main source for nutrients.
 Drink alcohol in moderation, if at all. Alcohol may contribute to dehydration, can lower
the abilities of your immune system, and provides no beneficial nutrients.
 Most importantly, know that your cancer journey is unique to you and your
treatment. You may experience side effects that affect your ability to follow these
suggestions. If you are struggling with any side effects, such as loss of appetite, nausea,
diarrhea, vomiting, or any other nutrition concerns, your needs may be different. A
registered dietitian can suggest nutrition guidelines that will be appropriate for your cancer
journey.



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Colorectal Surgery Nutrition Guidelines
The most common surgery for colorectal cancer is called a colon resection (colectomy). The
surgeon removes part of the colon and then joins the remaining parts back together. Your
surgeon calls this anastomosis. Other specific types of surgery may include: partial colectomy
or right colectomy (ileocolectomy). Regardless of surgery type, nutrition and diet play a very
important role in the preparation for the surgery and immediately after the surgery. Here are
some tips and guidelines that will help you with your diet and nutrition before and after your
surgery.
Follow your surgeon’s instructions very carefully before your surgery.
Your surgeon will most likely give you very specific instructions to follow in the days leading up
to your surgery. It is very important to follow these to minimize any complications and to allow
your surgeon to do the best job possible.
Give your colon adequate time to heal and transition slowly back to a regular diet.
While you are in the hospital, your medical team will help you with your diet and advance it as
appropriate. If you are still having difficulty tolerating food when you are discharged from the
hospital, contact your healthcare team.
 Clear Liquids: Juice (without pulp), broth, tea, soft drinks, gelatin, fruit ice, popsicles,
and water.
 Full Liquids: All liquids allowed on clear liquid diet, cream soup, milk, milk shakes,
nutrition supplements, pudding, custard, ice cream, and cooked hot cereals such as
oatmeal, grits, or cream cereals.
o Dairy products such as milk and foods made with milk may cause nausea or
increase nausea. Avoid these foods if you are not tolerating them well.
 Low fiber: Avoid all whole grain breads, whole grain cereals, brown rice, whole wheat
pasta, and popcorn. Choose white bread, rice cereals, white rice, and regular
pasta. Avoid raw vegetables and juices with pulp. Avoid fresh and canned pineapple,
prune juice, prunes, dried fruit, jam, and marmalade. Avoid nuts, seeds, chunky peanut
butter (Creamy peanut butter is okay.), tough meats, fried foods (French fries, fast
food), beans, peas, hot dogs, sausage, strong flavored cheeses, coconut, raisins, and
desserts with nuts or raisins.
Food tolerance after surgery is not “one size fits all”. Be patient with yourself.
Introduce foods slowly, one at a time, and in small portions. Wait 1-2 hours after trying a new
food to see how your body digests it and reacts. Eating too much and too many foods all at
once will make it difficult to tell which foods (if any) are problematic. It may be helpful to keep a
food diary to help you keep track of which foods are not well tolerated. If you are experiencing
nausea, be sure to take anti-nausea medication as prescribed. Consult a registered dietitian if
you have prolonged nausea that is keeping you from trying to eat healthy foods.
Try to establish regular eating habits and strive for 4-6 small meals per day.

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Smaller portions of food are easier on the digestive system. Your body may also absorb
nutrients more readily from smaller portions. Smaller meals eaten at regular intervals may help
to establish regularity in your bowel habits.
Drink plenty of fluids to avoid dehydration.
Staying well hydrated will help in the recovery process. A general goal for daily water
consumption is eight to ten 8-ounce glasses per day. Water is preferred but caffeine-free tea,
broth, and other liquids do count.
If your colon surgery requires an ostomy bag, consult a registered dietitian for advice.
There are specific dietary guidelines and advice for people with colostomy and ileostomy
bags. A registered dietitian can assist you by making individualized recommendations.

Soft Foods Chart
A health care professional or registered dietitian may recommend you eat a soft food diet
before, during, or after cancer treatment. This chart provides a list of suggested soft foods as
well as foods to avoid on a soft food diet.
Food
Group
Recommended Foods
Foods to Avoid
Grains
Oatmeal and creamed cereals
Well moistened dry cereals
Tender pastas, noodles, and rice
Breads, biscuits, muffins, pancakes,
or waffles moistened with syrup,
jelly, margarine, or butter
Breads with nuts, seeds, coconut, or dried
fruits
Hard, coarse cereals and high fiber
cereals such as bran, barley, or granola
Cereals with dried fruit, nuts, or coconut
Dry bread, toast, and crackers
Tough, crusty breads such as French
bread or baguettes
Dry or chewy cakes and cookies
Vegetables
Soft, cooked vegetables without
skins or seeds
All raw vegetables
Cooked corn
Tough, crisp fried potatoes, potato skins
Other fibrous, tough, or stringy cooked
vegetables
Fruits
All canned and cooked fruits
Soft peeled fresh fruits such as
peaches, nectarines, kiwi, mangoes,
cantaloupe, honeydew, watermelon
(without seeds)
Raw fruits with tough skins and seeds
Stringy, high pulp fruits, such as
pineapple or mango
Dried fruits such as prunes, raisin,
apricots
Dairy/ Milk
Milk, cream, half and half
None

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Yogurt
Cottage cheese
Ice cream without nuts or candy
Custard, pudding, sherbet, malts,
and frozen yogurt
Meat and
Proteins
Well-moistened, thin sliced, tender,
or ground meat
Poultry or fish with gravy or sauce
Eggs
Casseroles with small chunks of
meat, ground meat, or tender meats
Tough, dry meats and poultry
Dry fish of fish with bones
Chunky peanut butter, nuts, and seeds

Low-Residue Sample Menus
Some types of cancer and cancer treatments may cause stomach discomfort and diarrhea.
Your doctor may recommend that you follow a low-residue, or low-fiber, diet. A low-fiber diet
reduces the amount and frequency of bowel movements, therefore reducing irritation to your
digestive tract. Your healthcare team may also recommend a low-fiber diet if you have a
colostomy or ileostomy, or recent intestinal surgery.
Suggestions for a low-residue, low-fiber diet are listed below. When reading nutrition labels on
packaged foods, look for foods that contain fewer than 2 grams of dietary fiber per serving. Ask
for a referral to a registered dietitian (RD) to help you find out how much fiber you should be
consuming.
Avoid:
Raw, undercooked fruits and vegetables
Fruits and vegetables with seeds, skins, or hulls
Cooked greens or spinach
Peas and corn
Berries
Dried fruits
Juices with pulp
Prune juice
Tough meats with gristle
Fried meat, poultry, or fish
Sushi
Dried beans, peas, or lentils
Sausage, bacon, or hot dogs

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Chunky nut butters
Whole grains, such as whole wheat bread, brown rice, quinoa, barley, oatmeal, and popcorn
You may also want to avoid these gas-forming vegetables: beets, broccoli, Brussels sprouts,
cabbage, lima beans, mushrooms, okra, onions, parsnips, peppers, and potato skins.
Eat:
Canned or well-cooked fruits and vegetables
Low-fat milk (if lactose intolerant, choose lactose-free)*
Yogurt without added granola, fruit, nuts, or seeds*
Soymilk, rice milk, or almond milk*
Sherbet*
Tender, well-cooked meat, poultry, pork, or fish
Eggs
Smooth nut butters
Tofu
White bread, pasta, or rice
Cream of Wheat
Grits
Cold and hot cereals made from refined white flour
Pancakes and waffles made with refined white flour
Oils, butter, cream cheese, margarine, mayonnaise
*Although milk does not contain fiber, it can leave a residue in your intestines, leading to
diarrhea and discomfort. If you can tolerate milk, limit milk products to no more than 2 cups per
day. If you are lactose intolerant, try using lactose-free products.
What about dessert?
Choose desserts without whole grains, seeds, nuts, raisins, or coconut. Desserts can be high
in sugar, which can cause diarrhea to worsen. Limit yourself to small portions of these treats.
Some examples include sugar cookies, popsicles, angel food cake, Italian ice, and gelatin.
Below are three sample meal plans for following a low-residue diet (each with about 2,000
calories). For a meal plan to meet your specific needs and food habits, ask your healthcare
team for a referral to a registered dietitian who works with cancer patients. If you struggle with
your food choices or don’t have enough energy, a registered dietitian can help you develop a
healthy meal plan.
Low-Residue Sample Menu: Day 1
Meal

Suggested Items
Notes
Breakfast
1 scrambled egg with
Look for bread with fewer than 2

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Fiber 2 grams
1 oz. mild cheddar cheese
2 slices white toast with
2 tsp. butter
2 tsp. grape jelly
4 oz. cranberry juice
8 oz. tea
grams dietary fiber per serving.

Use jelly instead of jam or preserves.


Try decaffeinated beverages.
Morning Snack
Fiber 1 gram
6 saltine crackers
1 Tbsp. peanut butter
8 oz. water
Use smooth instead of crunchy nut
butters.
Lunch
Fiber 6 grams





grilled chicken sandwich with
3 oz. grilled chicken
1 oz. Swiss cheese
1 tsp. mustard
1 hamburger bun
1 cup chicken and rice soup
½ cup well-cooked zucchini
½ cup canned pears
8 oz. water
If lactose intolerant, look for lactose-
free cheese.

Use buns made with white flour and
no sesame seeds or berries.

Eat well-cooked vegetables without
seeds or peels.
Afternoon Snack
Fiber 2 grams

1 small bagel
1 Tbsp. cream cheese
8 oz. herbal tea
Choose plain bagels without fruit or
nuts.
Dinner
Fiber 3 grams

4 oz. baked salmon
½ cup well-cooked green
beans
¾ cup Ginger Rice*
white dinner roll with 1 tsp.
butter
8 oz. iced tea
Remove strings from green beans.

Healthy people need 8-10 glasses of
fluid daily. If you have diarrhea you
may need more fluid.
Bedtime Snack
6 oz. sorbet
8 oz. water
Use sorbet without fruits.

Low-Residue Sample Menu: Day 2
Meal

Suggested Items
Notes
Breakfast Fiber 5
grams


1 cup puffed rice cereal with
4 oz. low-fat milk
½ English muffin with 1 Tbsp.
smooth peanut butter
¾ cup cottage cheese with
½ cup canned peaches
8 oz. coffee
Use grains made from refined, white
flour.

If lactose intolerant, look for a
lactose-free milk, like soy or almond
milk.

Choose canned fruit without peels.

Morning Snack
6 vanilla wafers with


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Fiber 1 gram

1 Tbsp. almond butter
8 oz. strained lemonade
Lunch
Fiber 5 grams


one 3.5 inch x 3 inch slice meat
lasagna
1 small piece French bread
1 tsp. butter
½ cup applesauce
8 oz. iced tea

For lasagna, use sauce made from
peeled, seedless tomatoes.

Try a ripe banana, baked peeled
apples, or melon in place of
applesauce.
Afternoon Snack

6 oz. yogurt
8 oz. water

Use creamy yogurt with live and
active cultures and without berries
and nuts.
Dinner
Fiber 3 grams

3 oz. pork loin
½ cup glazed carrots
½ cup mashed potatoes, no
skins
1 small dinner roll
1 tsp. butter
4 oz. apple juice
8 oz. water
Choose meats that are tender and
well-cooked but not fried.


For variety, try vegetable juice that is
strained with no pulp.

Bedtime Snack
2 small sugar cookies
8 oz. herbal tea
Try an assortment of plain cookies
without nuts or fruit.

Low-Residue Sample Menu: Day 3
Meal

Suggested Items
Notes
Breakfast
Fiber 3 grams


2 slices French toast
1 tsp. butter
8 oz. low fat vanilla yogurt
½ cup mandarin oranges,
canned
8 oz. herbal tea
You may also use white bread in
place of French toast.


Morning Snack
Fiber 1 gram

2 squares graham crackers
with
2 Tbsp. cream cheese and 1
Tbsp. jelly
8 oz. water


Use jelly instead of jam or preserves.
Lunch
Fiber 4 grams




tuna salad sandwich made with
½ cup tuna mixed with
2 Tbsp. light mayo
2 slices white bread
1 oz. pretzels
1 cup canned pineapple
8 oz. water
You may use salmon in place of tuna.




Try canned fruits packed in water.

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Afternoon Snack

hardboiled egg
1 oz. mozzarella cheese
8 oz. water
Egg, tofu, and cheese are quick
protein sources.
Dinner
Fiber 7 grams


3 oz. Lemony Honey Glazed
Roasted Chicken*
½ cup canned yams, mashed
1 cup well-cooked green beans
1 small dinner roll
1 tsp. butter
8 oz. iced tea


Peel potatoes or vegetables before
cooking.
Bedtime Snack
Fiber 1 gram
2 medium gingersnap cookies
8 oz. herbal tea
Drink caffeine-free beverages in the
evening for better sleep.

* Denotes a My PearlPoint recipe
You can find these recipes and more at my.pearlpoint.org.

Food Safety
The immune system is weakened during all types of cancer treatment. Unfortunately,
chemotherapy medications are not able to tell the difference between healthy cells and cancer
cells. For this reason, perfectly healthy red and white blood cells are damaged or killed during
treatment and shortly thereafter. The result of this is that body is not as good at fighting illness
and infection. A common term used to refer to a very low neutrophil (white blood cell) count
is neutropenia. Paying special attention to food safety during cancer treatment to reduce the
risk of exposure to food borne illness may also be referred to a neutropenic diet. The
following are some simple tips to reduce exposure and avoid unnecessary infection and/or
illness during the time the immune system is compromised.
Keep EVERYTHING Clean
 Wash hands often and thoroughly especially before handling any food as well as
after. Be sure to wash hands with warm water and soap for at least 20 seconds. Pay
special attention to finger nails and the backs of the hands.
 Keep raw and cooked foods separate. Do not reuse any utensils, cutting boards, plates,
dishes, etc. once they have been touched by raw meat or eggs. Utensils, cutting
boards, plates, dishes, etc. that have been used for preparing raw meats or eggs should
be washed in hot, soapy water. It is best to keep a separate cutting board for meat and
fruits/vegetables. Have an extra clean cutting board available for additional preparation
as well.
 When shopping for and storing raw meats, keep them away from other foods and cover
the packages with extra plastic wrap or use plastic bags. This will prevent any liquids
from leaking onto other foods or surfaces. Store meats and eggs toward the bottom of
the refrigerator to prevent any dripping on other foods below.

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Cook Food Thoroughly
 Avoid raw meat such as sushi, undercooked eggs (make sure eggs are at least “over
easy” and not “sunny side up”), and other meats that have not been cooked to a proper
internal temperature.
 Cook all eggs until both the white and the yolk are firm.
 Use a meat thermometer to make sure that all meats are cooked to the proper internal
temperature prior to eating. Here is a chart for reference:
Meat
Internal Minimum Temperature
Ground Beef
165º F
Turkey
165º F
Chicken
165º F
Steak or other cuts of beef
160º F
Whole chicken, turkey, duck, or goose
180º F
Pork
170º F
Egg dishes
160º F
Casseroles
165º F
Reheated leftovers
165º F

Foods To Avoid
 Raw or undercooked meats
 Unpasteurized milk and juices
 Soft cheeses made with unpasteurized milk such as feta, blue cheese, Roquefort,
Stilton, brie, or Farmer’s cheese
 Processed meats such as luncheon meats as well as anything else from a deli counter
 Refrigerated meat spreads or paté
 Smoked fish or precooked shrimp or crab meat
 Sprouts such as bean sprouts, alfalfa sprouts, or broccoli sprouts
 Pre-cut fresh fruit and vegetables. Buy them whole, wash, and cut them yourself using
proper sanitary techniques as outlined above.
 Unwashed fresh fruits and vegetables
 Unroasted or raw nuts and seeds
 Raw tofu or tempeh
 Food from salad bars of buffets
 “Fresh” salad dressings, salsas, sauces, etc. sold in the refrigerated section of the
grocery store.
 Raw apple cider

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 Raw honey
 Unrefrigerated cream filled pastries
The guidelines above were created with those who have severely weakened immune
systems in mind. Consult your physician or health care team for regular updates on
your blood counts and the status of your immune system.



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Must Have Grocery List

It’s always important to have good, healthy foods on hand, especially if you are fighting cancer
or are a cancer patient. Eating well during cancer treatment can help to improve your overall
health, improve your response to treatment, and maintain good health during treatment and
recovery. Having a well-stocked pantry can assure that you are getting the calories and
nutrition your body needs. Below are some suggested items that are healthy kitchen staples.

Pantry

Grains
 Whole grain breads, English muffins, pita bread, flour or corn tortillas
 Crackers: saltines, club crackers, whole wheat crackers, graham crackers
 Whole grain brown rice or white rice
 Whole wheat and refined pastas such as, penne, bowtie, macaroni, and egg noodles,
etc.
 Quick cooking oats and steel cut oatmeal
 Couscous, bulgur, or quinoa
 Cream of wheat
 Grits

 Dry cereal
 Natural popcorn
 Flour, cornmeal, breadcrumbs

Fruit/ Vegetables
 Canned fruit
 Dried fruit
 Individual fruit cups
 Applesauce, no sugar added
 Potatoes and sweet potatoes
 Onions
 Garlic
 Canned tomatoes (diced, whole), tomato sauce, marinara sauce
 Canned no salt added vegetables
 Instant mashed potatoes

Dairy
 Nonfat dry milk powder or whey protein powder

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 Evaporated Milk
Proteins
 Canned tuna, salmon, or chicken. (Choose those packed in water, not oil.)
 Natural peanut and almond butter
 Unsalted nuts and seeds
 Canned or dried beans, vegetarian refried beans, lentils.
 Protein bars

Fats and Oils
 Oil, olive, canola, cooking spray

Other
 Canned low sodium soups
 Low sodium chicken, beef, or vegetable stock
 Dried herbs and spices
 Vinegars such as red wine and balsamic
 Decaffeinated teas
 Flavored drink mixes, lemonade
 Pudding or gelatin mixes
 Individual pudding or gelatin cups
 Honey, sugar, stevia

Refrigerator:

Fruits/Vegetables
 Fresh and jarred fruits and vegetables
 Packaged salad mixes such as spinach, romaine and arugula

Dairy
 Low-fat milk,
 Low-fat plain or Greek yogurt
 Cheese slices, cheese sticks, shredded or crumbled cheese
 Reduced fat cottage or ricotta cheese
 Fortified soy, almond, or rice milk

Proteins
 Eggs

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 Skinless chicken breasts or ground chicken breast
 Lean pork
 Lean cuts or lean ground beef
 Ground turkey or turkey breast
 Nitrate and nitrite-free deli meats
 Hummus

Fats and Oils
 Mayonnaise
 Salad Dressings
 Reduced

Other
 Beverages- 100% juices, tea, sports drinks, liquid nutrition supplements
 Fat-free sour cream
 Lemon juice, lime juice
 Sauces and condiments like low sodium soy sauce

Freezer:

Grains
 Frozen whole grain waffles
 Whole grain breads, rolls, English muffins, bagels, etc.

Fruits/ Vegetables
 Frozen vegetables and fruits
 Frozen juice concentrate (100% juice)

Dairy
 Frozen desserts: sherbet, frozen yogurt, ice cream

Proteins
 Chicken breasts
 Fish such as tilapia, salmon, flounder
 Shrimp

Other
 Popsicles



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Nutrition Self-Assessment Screening Tool
Good nutrition is important before, during, and after cancer treatment. Do you need to speak
to a registered dietitian about nutrition? Answer the questions below to find out if you are at
risk for malnutrition or not getting the proper nutrition you need during cancer treatment.
Directions: circle Yes or No for each question.
1. Have you lost 5-10 pounds or more without trying during the last 3 months?

Yes

No


2. Has your food intake decreased lately, due to one of the following:
- loss of appetite
- diarrhea or constipation
- sore mouth, tongue, and throat
- problems swallowing
- nausea and / or vomiting
- taste and smell changes
- dental and tooth problems
- food resources or budget
- Other: __________________

Yes

No

3. Do you think you need help with your nutrition?

Yes

No
Results: If you circled one or more YES’s, you may need help with your meal planning to be
well nourished. Ask your healthcare team for a referral to a registered dietitian in your
community, hospital, or outpatient cancer center.



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A cancer diagnosis brings with it practical concerns such as financial, emotional, and legal
issues. If possible, it is best to address these concerns before you begin treatment because
you may not want to deal with these issues when you are not feeling well. In the next few
sections, you will find information on the following:

 Preparing financially for cancer
 Legal considerations
 Hospice and palliative care
 Finding emotional support

Financial Concerns and Cancer
A cancer diagnosis can cause financial concerns. Even if you have insurance, there are things
you need to think about. Here are the questions you need to ask before you start treatment:
Am I insured? Is my insurance going to cover the cost of treatment?
 Before you begin treatment, take a look at your insurance plan to see what starting
treatment will cost you.
 A portion of costs will be “out of pocket” with any insurance plan.
o See if you can get this cost automatically taken out of your bank account or pay
check or paid with a credit card.
 You have to meet your deductible before your insurance company will pay for care.
 As soon as possible, determine what your co-payment will be for each appointment and
treatment.
o Use this to make a budget for future treatments and doctor appointments
 Most insurance plans have the option for cancer patient to be assigned a case
manager.
o Be sure to ask for this service.
o This person will be able to answer all your questions.
o If your insurance company does not have a case manager service, ask to speak
to the same representative each time you call.
o If your insurance is through your employer, someone in HR will be able to answer
questions about your coverage.
 You may need to find a supplemental program to cover fees that your primary insurance
does not.
What if I don’t have insurance?
 State Medicaid: www.cms.gov
Practical Concerns

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 Medicare: www.medicare.gov and www.cms.gov
 Affordable Care Act: www.healthcare.gov/law/
 Hill Burton: http://www.hrsa.gov/gethealthcare/affordable/hillburton/
 Your Local Health Department and Local Free Clinics: http://freeclinics.us/clinics/search
Can I afford treatment? What other expenses can I expect?
 Before you begin treatment, ask the billing department for the expected cost.
o When you begin, your doctor will give you a treatment plan.
 For example, you will do a certain number of rounds of chemotherapy or a
certain number of weeks of radiation.
o Take this plan to the billing department to get an estimate of the cost of your
prescribed treatment plan.
o The more information you get the better you can prepare.
 Ask the billing department if there are any ways you might be able to save money.
o Many providers will give you a discount if you pay in full.
o Ask if you can set up a payment plan where you pay a certain amount each
month towards your bill.
 You will need to change your current budget to include costs related to your cancer
diagnosis and care.
Are there options for treatment that are less expensive? Are these options just as
effective? Am I eligible for a clinical trial?
 Ask your doctor and healthcare team these questions.
 Be sure to discuss all your treatment options with your healthcare team.
 Clinical trials are not more or less expensive than other treatments. Many insurance
plans cover clinical trial treatments. Ask your doctor and healthcare team for more
information
Does my hospital or treatment center have options for financial assistance? Is there
assistance I can apply for? Does my hospital have a reduced cost program? If so, what
are the eligibility requirements?
 Many hospitals have options for financial assistance.
 Ask if there is someone you can talk to about your options.
What other costs should I expect?
 Additional expenses you need to consider include:
o Transportation
o Child care
o Nutritional supplements
o Additional prescriptions
o Prostheses (artificial body parts) or wigs
o Household chore services (cleaning, grocery shopping, etc.)

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10 Financial Assistance Tips for Cancer Patients
Whatever your financial situation, a diagnosis of cancer can complicate your budget. Review
these tips for greater financial peace of mind.
1. Understand your current and upcoming financial situation.
 Use the budgeting worksheets in this handbook to help you understand your
regular income and expenses. Doing so can ensure that you are not blindsided
by the impact of any extra expenses.

Learn about the costs of your treatment plan. Before you begin treatment, your
doctor will prescribe a certain treatment plan; for example, a certain number of
weeks of chemotherapy. The billing department of your doctor’s office or
treatment facility may be able to give you an estimate.
2. Ask your doctor if there are more affordable options for treatment.
 Start with these questions: Are there less expensive treatment options? Would
these options be as effective?
3. If you do not already have a system for handling your finances, now is the time to
develop one.
 Decide how you will keep track of your finances moving forward. Will you keep
handwritten records? Will you use a computer program? Set aside a day and a
time every month to pay your bills (or weekly if needed).
 Ask a financial planner for help; your bank may have a customer service agent
who is helpful.
4. Keep accurate records of all medical bills, insurance claims, payments, and
receipts, as well as any mail regarding those items.

Get a notebook or special folder to keep track of everything in one place.
5. When looking for financial assistance, always start with your doctor’s office.
 Practices often have financial assistance and options for uninsured and
underinsured patients. Your doctor’s office may also have a social worker or
patient representative who can help you identify resources.
 Be sure to request any applications or possible services offered.
6. When contacting the billing department, ask to speak with the same
representative each time.
7. When asking for assistance, see if the billing department is willing to set up a
payment plan for you. You may get a discount if you are able to pay your bill in
full at the time of service.
8. Working with your insurance company and understanding your coverage will
help you know all your options.
 Many insurance companies offer case managers for diagnoses like cancer.
9. Look to nonprofit organizations for help.

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 Many national organizations have local branches that may be able to help with
specific costs. The assistance might not be much, but every little bit can help.
 Examples of organizations include: churches, American Cancer Society,
CancerCare, Salvation Army, and the United Way.
o American Cancer Society: (800) 227-2345
o CancerCare: (800) 813-HOPE (4673)
o United Way: Dial 211 or visit www.211.org or www.unitedway.org.
10. If you realize you are going to be late making a payment, be sure to call your
creditors as soon as you can and let them know of your situation.
 Some companies like your credit card or Mortgage Company might temporarily
change your payment requirements or interest rate.
Managing My Health Insurance
Even with insurance, the cost of cancer is high and often requires lots of visits with primary
care doctors and specialists for labs, tests, and treatment. Your insurance may not cover the
cost of everything. You will also have out-of-pocket costs such as co-pays and deductibles that
may build up. To stay on top of these, make sure you know what to expect ahead of time. Here
are some tips for navigating your health insurance and the cost of cancer care:
Be familiar with your health insurance policy.
Learning about your health insurance can be a very daunting task. The best place to find out
about your policy is through your health insurance company.

If possible, see if your provider will assign to you a case manager. If not, ask to speak
with the same representative each time you call. This will make communication easier
for both you and the representative.

If your insurance is through your employer, you can also contact your Human
Resources representative with any questions.
Know what you are expected to pay.
Before you start treatment, take a look at your insurance plan and see what is covered and
what additional costs you will need to pay.
 A portion of the costs will be out-of-pocket regardless of your insurance plan.
 See if there is an option to get this cost automatically taken out of your bank account or
pay by check or with a credit card.
 Most health insurance companies have a deductible. A deductible is the certain amount
that you will have to pay before the insurance plan will start paying. Even with the
deductible met, you may have to make co-payments.

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 Always look in advance into what your co-payment will be for each appointment and
treatment.
Make a budget.
Use coverage, co-pay, and deductible information to make a budget for future treatments and
doctor’s appointments. This is also a good way to plan your new budget and not be surprised
by the additional costs.
 Use the budgeting worksheets provided at the end of this handbook.
Submit everything to your insurance company.
Submit all of your medical expenses, regardless if you think your insurance company will cover
it or not. The only way to get an expense covered is to submit it. It is better to ask and be
turned down than spend unnecessary money out-of-pocket.
Look for financial assistance.
If you are still having trouble managing costs, look to financial assistance programs. Forms of
assistance include co-pay as well as premium assistance and prescription assistance
programs. All financial assistance is usually dependent on income and cancer type.

The Patient Advocate Foundation may be able to assist with co-pays. For more information,
call 1-800-532-5274.
The Basics of Medicare
Medicare is an insurance program run by the United States government. Medicare is for
people who
 Are 65 years and older and are eligible for Social Security benefits
 Are receiving Social Security Disability Insurance and have completed a 2-year waiting
period for Medicare
 Have Railroad Retirement/Disability benefits
 Have end-stage renal disease or Amyotrophic Lateral Sclerosis
Medicare has 4 types of possible coverage.
Part A (Hospital Insurance): Part A covers inpatient care. It is free for most Medicare
recipients. The services covered by Part A include hospital care, skilled nursing facility care,
nursing home care, hospice, and home health services.

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Part B (Medical Insurance): Part B covers medically necessary services, meaning services or
supplies that are needed to diagnose or treat your medical condition and meet accepted
standards of medical practice. Part B also covers preventive services such as healthcare to
prevent illness or detect it at an early stage when treatment is most likely to work best. These
services include clinical research, ambulance services, durable medical equipment, mental
health, second opinion, and limited outpatient prescription drugs. Part B of Medicare does
come at a cost. In most cases, participants pay a premium of about $105 a month.
Note: Part A and B usually cover 80% of costs for individuals, leaving 20% left for the
individual to pay. (For example, if your bill is $4,000, Medicare would pay $3,200 and you
would pay $800.) With this type of Medicare, there are Medigap programs to cover the
additional 20%. These programs have a limited enrollment period; if that period is missed, you
may lose access.
Part C (Medicare Advantage Plans): Part C plans are offered through private companies
approved by Medicare. These plans cover all the services provided by Medicare Part A and
Part B. These plans vary depending on location and have their own set premiums, deductibles,
and co-pays.
Part D (Prescription Drugs): Part D may be covered by your premium if your income is below
a certain amount. Otherwise, you will pay according to your income (no more than $69.30 a
month).
If the cost of Medicare is too much, look to Medicare.gov for options to help pay your costs.
Medicare.gov is also a great resource to look up what is specifically covered by Medicare.

I Am Uninsured. What Are My Options?
If you are uninsured or underinsured and have been diagnosed with cancer, you should know
your options for health insurance and reduced-cost medical care.
Medicaid:
Medicaid is an insurance program for those who are low income and meet the eligibility
requirements. Medicare is funded by state and federal government.
 Eligibility depends on what state you live in because each state individually runs its own
program.
 Visit your local government website or Department of Human Services for more
information.
 Medicaid programs have strict rules about who can qualify. If someone in your
household is able to work, you may not be able to receive Medicaid.
 Medicaid programs often include:

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o Children
o Pregnant women
o Social Security insurance recipients
o People diagnosed with some cancer types
 Even if you are in one of the above categories, you will still need to qualify based on
your income.
 Under the Affordable Care Act, many states expanded their Medicaid programs to
include almost all adults with an income below 138% of the federal poverty limit. For
example, if two people live in your household and have a combined income of less than
$21,707, you may qualify.
 For the most up-to-date information on these expansions, visit healthcare.gov and the
Kaiser Family Foundation at kff.org.
COBRA:
The Consolidated Omnibus Budget Reconciliation Act (COBRA) was created to allow some
people to temporarily keep insurance coverage if there are changes in their employment. The
program allows you to keep your former job’s insurance by paying the full price of the
insurance to your employer (not the reduced rate you paid as an employee).
 Examples of employment changes include the following:
o Being fired or laid off from your job
o Voluntarily leaving your job
o Having your hours reduced, making you ineligible for insurance
o Having health insurance through a spouse’s job, and he or she died, or you are
now divorced or separated
 COBRA is a very expensive option and may seem unaffordable, but COBRA can buy
you some time. If you have cancer, your medical bills from being uninsured could be
more than COBRA.

If you are eligible but have not signed up for COBRA, you may be able to pay past
premiums and obtain COBRA coverage.
Affordable Care Act:
The Affordable Care Act (ACA) was signed into law in 2010. The ACA changed a lot of the
laws of the U.S. healthcare system. The goal of the ACA was to increase the quality and
affordability of healthcare in the U.S. As part of the ACA, people can sign up for health
insurance through the government-run healthcare marketplace if they do not have insurance
through their employers or another source.

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 Now that the March 31, 2014, enrollment deadline has passed, the only way to apply for
coverage through the ACA marketplace is to see if you qualify for a special enrollment
period.
 The enrollment period for 2015 will begin on November 15, 2014. In the meantime, you
can look to healthcare.gov to see if you might qualify for a subsidy and what your
deductible and premiums might be.
 Now that insurance companies can no longer disqualify individuals based on pre-
existing conditions, the marketplace has multiple options that are great for those with a
cancer diagnosis.

If you are under 26 years old, you can still be on your parent’s health insurance plan.
 Your options through the marketplace depend on where you live. It is best to check the
marketplace directly to see your individual options. Visit healthcare.gov for more
information.
Local Health Department and Local Free Clinics:
 Look to local free clinics to get your medical treatment.
 You can also do a search of free clinics in your area at The National Association of Free
& Charitable Clinics at www.nafcclinics.org/clinics/search.

In addition to free clinics, there are approximately 170 healthcare facilities that still
provide free or reduced cost services under the Hill Burton free and reduced cost
healthcare law.
 You must apply at the admissions office of the participating hospital to determine if you
meet eligibility requirements.
 For more information, visit the US Department of Health and Human Services at
www.hrsa.gov.
Finding Transportation
Transportation to and from treatment can be difficult to find and maintain. Some first steps to
finding reliable transportation include the following:
 Always begin by asking your healthcare team if your treatment center provides
transportation assistance.
 Try calling your insurance provider. Some insurance plans also provide help with
transportation to and from treatment.
If neither of these options is helpful, try some of these resources:
The American Cancer Society’s Road to Recovery

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The American Cancer Society offers a volunteer-run service called Road to Recovery. This
service provides transportation to and from treatment for people who have cancer and do not
have a ride or are unable to drive themselves. Because this service is run by volunteers who
donate their time and use their own cars, the drivers cannot usually drive long distances. Call
(800) 227-2345 to learn how to schedule a ride in your area.
Public Transportation
Bus systems and local public transportation are good options. Most public transportation
systems have door-to-door service options for medically needy and handicapped individuals.
Note, however, that your healthcare team may advise you not to use public transportation if
you have a weakened immune system.
Financial Assistance to Cover Gas Costs
If you are able to drive and have to travel a long distance, you may be able to find financial
assistance to cover the gas costs of transporting yourself. There are multiple resources for this
assistance including the American Cancer Society, CancerCare, and Grind for Life. These
resources can provide a limited amount of financial assistance for the cost of gas or other
costs of travelling, such as bus passes or the cost of medical transport. Also check with your
treatment center. Sometimes local organizations provide gas cards directly to treatment
centers to distribute.
You can contact the organizations listed above using the following information:
o American Cancer Society: (800) 227-2345 or cancer.org.
o CancerCare: (800) 813-HOPE (4673) or www.cancercare.org.
o Grind for Life: (561) 252-3839 or www.grindforlife.org.
Free or Reduced-Cost Flights
Sometimes getting to treatment also includes having to fly for treatment. Angel Flight is an
organization that provides free air transportation for medically necessary trips. They are a
nonprofit of pilots and volunteers. You can contact Angel Flight by calling (918) 749-8992 or
visiting www.angelflight.com.
Finding Lodging
A cancer diagnosis may require you to travel for doctor appointments and treatment. Some
forms of treatment require you to visit a treatment center for multiple days in a row for weeks at
a time. There are a couple of options to consider when having to make these kinds of
extensive trips.
Checking with Your Treatment Center

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If you need assistance finding or paying for lodging, tell your healthcare team as soon as
possible. Some treatment centers have lodging coordinators especially if the center treats a lot
of patients from out of town. Treatment centers may also have their own lodging such as a
hospitality house. Ask your healthcare team if your treatment center has resources to help with
lodging.
American Cancer Society’s Hope Lodge
The American Cancer Society (ACS) sponsors Hope Lodges in most major cities throughout
the country. It is free to stay at all the Hope Lodge locations. If you have an ACS Hope Lodge
in your area, your oncology nurse or social worker should be able to help with the application
process. This resource is not for those who are homeless. ACS will check to make sure you
have somewhere to stay once you have checked out. To contact the American Cancer
Society, call (800) 227-2345 or visit www.cancer.org.
Hotels with Medical Rates
For discount lodging, hotels with medical rates are a great option. Most major hotel chains
offer medical rates for those who are travelling for medical treatment. Make sure you book your
rooms in advance. The hotel may require proof from your doctor that you are traveling for
medical reasons.
Joe’s House
The nonprofit Joe’s House provides an online nationwide database of places that offer lodging
for cancer patients. Check out their website to determine options in your area. You can search
by state, city, and even treatment center. The search results include nonprofit lodging as well
as hotels that provide medical discounts. Visit Joe’s House at www.joeshouse.org.

What Do I Need To Know About Social Security Disability Benefits and
Cancer?
Do you have a cancer diagnosis? Are you no longer able to work? You may qualify for Social
Security Disability benefits.
The Social Security Administration (SSA) offers financial assistance in the form of Social
Security Disability benefits. A cancer diagnosis does not automatically make you eligible
for SSA benefits. You have to apply. Here is what you need to know about Social Security
Disability benefits and cancer:
 Social Security Administration (SSA) and Social Security Disability benefits
o To qualify, you must meet the SSA’s definition of disability.
 A cancer diagnosis does not automatically meet the SSA’s definition of disability.
 The SSA processes cancer disability claims on a case by case basis.
 You must prove you cannot work for at least one year because of your diagnosis.

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 You need proof from your doctor that you cannot work.
 People who have stem cell or bone marrow transplants automatically meet the
definition.
o
In cases of advanced stage cancer, you may qualify for “Compassionate Allowance.”
 This allows applicants to qualify for benefits in as little as ten days.
 Visit http://www.disability-benefits-help.org/compassionate-allowances for more info.
o Apply as soon as possible. The SAA denies most disability claims at first. You can
appeal the decision.
o You can fill out the forms online at http://www.ssa.gov/ or at your local Social Security
Office.
The SSA offers two types of disability programs.
1. Social Security Disability Insurance (SSDI)
o You must have worked jobs in which you paid Social Security taxes.
o You must meet the SSA’s definition of disability.
o People approved for SSDI are eligible for Medicare after a two year waiting period.
o SSDI is not health insurance.
2. Supplemental Security Income (SSI)
o SSI is a needs-based program. You must prove your income and assets are below the
limit.
o You do not need work credits to qualify.
o You must meet the SSA’s definition of disability.
o SSI is also available for individuals over 65 without a disability who meet the financial
need requirement.
o People approved for SSI automatically qualify for Medicaid.
o
In some cases, you may qualify for both SSDI and SSI.
o SSI is not health insurance.
To check your eligibility for all SSA programs, use the Benefit Eligibility Screening Tool (BEST)
at http://www.benefits.gov/ssa. Based on your answers, this tool lists benefits you may be
eligible to receive. This tool does not guarantee approval.
For more information you can also call the Social Security Administration at (800) 772-1213.

Advanced Directives
Advanced directives or an advance care plan are legal papers. These papers tell your family
and healthcare team your medical wishes. They are used in case you cannot make a medical
decision. For example, if you are unconscious, your healthcare team and family will follow your
advanced directives.
Advanced directives may differ by state. Your hospital or treatment center can give you the
forms. Be sure to give your family members and healthcare team a copy of your advanced
directives. If you change your mind about the kind of treatment you prefer, you can change
your advanced directives.

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Advanced directives may include living wills, medical power of attorney, or DNR orders. Here
is a list of things to consider for your advance care plan:
 Life support or use of equipment such as dialysis machines, ventilators, and respirators
 DNR (Do Not Resuscitate)
o DNR orders tell your healthcare team not to do CPR if your heart or breathing stops.
 CPR (cardiopulmonary resuscitation)
 First aid used when your heart or breathing stops. CPR can include chest
compressions, electric shock, or medication.
 DNI (Do Not Intubate) orders
o DNI orders tell your healthcare team not to put a tube through your nose or mouth to
help you breathe.
 Artificial nutrition and hydration
o
If you are unable to eat or drink, your healthcare team will provide you with nutrition and
fluids through an IV or feeding tube.
 Treatment of new conditions
 Organ and tissue donation
 Medical Power of Attorney
o Medical power of attorney lets you name another person, such as a family member or
close friend, who can make decisions about your medical care if you cannot.
o This may also be called a healthcare proxy, appointment of healthcare agent, or
durable power of attorney.
o Most states will not allow anyone on your healthcare team to be your medical power of
attorney.
A good resource for creating your living will is Aging with Dignity’s Five Wishes. Five
Wishes is a living will worksheet that lets your family and doctors know:
 Who you want to make health care decisions for you when you can't make them.
 The kind of medical treatment you want or don't want.
 How comfortable you want to be.
 How you want people to treat you.
 What you want your loved ones to know.
You can order the Five Wishes worksheets at http://www.agingwithdignity.org/five-
wishes.php or call (888) 5WISHES (594-7437).

A cancer diagnosis can be a stressful time. It may be scary to consider these issues before
you are very sick. However, it is important to think about these issues early. You will not want
to deal with them when you are feeling very ill.

Palliative and Hospice Care
At some point in your cancer journey, you may need to consider palliative care or hospice.
Palliative care is a treatment that helps relieve pain and symptoms but does not provide a
cure. Palliative care can be used along with your prescribed cancer treatment. Hospice is a

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type of palliative care. Specifically, hospice is end-of-life care. Both palliative care and hospice
aim to improve quality of life. Talk with your healthcare team about what is best for you. Below
you will find more information about hospice and palliative care. Use the questions at the end
to guide talks with your healthcare team.
 Palliative care
o Palliative care helps relieve pain and symptoms but does not provide a cure.
o You may use palliative care at any point during your cancer journey. A patient does not
have to be terminal to receive palliative care.
o Palliative care can be combined with other forms of treatment.
o You may use palliative care to manage side effects from treatment.
o Some forms of palliative care may be covered by Medicare, Medicaid, or other
insurance plans. Often, costs for palliative care fall on the individual.

 Hospice
o Hospice is a type of palliative care.
o Hospice is end-of-life care. Terminal patients with a life expectancy of six months or
less often use hospice.
o Hospice care is not usually given at the same time as other curative treatments.
Hospice is given after treatment options have been exhausted.
o Medicare pays for all hospice costs. In most states, Medicaid pays for hospice costs.
Most other insurance plans have hospice benefits.

 Questions to Ask Your Healthcare Team
o Should I consider palliative care now or in the near future?
o Will my insurance cover my palliative care?
o How long can I get palliative care?
o Where will I get my palliative care?
o Can I still do treatment for my illness while doing palliative care?
o Should I consider hospice care now or in the near future?
o Will insurance cover my hospice care?
o
If my life expectancy is longer than six months, can I still get hospice care?
o Can I get hospice care in my home?
o Who will be caring for me? Will they be doctors, nurses, social workers, or home health
aides?
o What legal issues such as advanced directives, living wills, or medical power of attorney
should I think about?
Emotional Support Programs
A cancer diagnosis can make you feel anxious and depressed. This is normal. It may help to
talk to someone. It can be especially helpful to connect with other patients and survivors. You
are not alone in your fight. You may find it helpful and inspirational to hear others’ stories. You
may also be able to help someone else by sharing your story. Here is some information about
available emotional support:
 Support groups

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o Connects you with a group of people in a similar situation
o Support groups meet on a regular basis.
o Support groups meet online, over the phone, or face-to-face.
o Ask your healthcare team about local support groups.
o Licensed social workers or other medical professionals facilitate most support groups.
o Support groups can be for current cancer patients, survivors, or family members.
o Some groups are defined by diagnosis, age, or sex.
o A support group is meant to help you through your cancer journey. The first support
group you go to may not be the right fit for you. If you do not enjoy the first group, try
another.
o Where can you find support groups?
 Your hospital or treatment center
 Your local American Cancer Society chapter
o Visit cancer.org or call (800) 227-2345.
 Cancer Support Community
o This includes The Wellness Community and Gilda’s Club.
o Visit cancersupportcommunity.org or call (888) 793-9355.
 CancerCare
o Visit cancercare.org or call (800) 813- HOPE (4673).

 Connect with a Fellow Survivor
o One-on-one partnering programs will match you with a fellow cancer survivor. This
person may have a similar diagnosis and may be finished with treatment.
o These allow for a more personal connection.
o Most programs are for family members as well as patients.
o Usually these programs are run through phone or email.
o How can you connect with a fellow survivor?

Imerman Angels
o Visit imermanangels.org or call (877) 274-5529.
 Cancer Hope Network
o Visit cancerhopenetwork.org or call (800) 552-4366.


Individual Counseling from a Medical Professional
o
If you find it difficult to function in your daily life because of anxiety or depression, you
may need individual counseling from a medical professional.
 Ask your healthcare team for a recommendation.
 Visit CancerCare for more information.



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Even after treatment ends, your cancer journey continues. Many cancer survivors refer to the
time after treatment ends as the “new normal.” It may take you a while to readjust to life after
treatment. You may wish to make changes in your nutrition and lifestyle to help prevent
recurrence. Use these sections to help you navigate your “new normal” and to promote
wellness during survivorship.


Screening Recommendations and Follow-Up Care
Follow-up care after completing colorectal cancer treatment is very important. Your healthcare
team will help you manage long term side effects and watch for any changes such as the
cancer spreading or coming back. Here are some things to remember about follow-up care:
 Always go to your follow-up appointments.
o You will probably have follow-up exams every 3-6 months following treatment
depending on the stage of your cancer.
o After some time goes by without a recurrence, your healthcare team will probably
lessen checkups to only once or twice a year.
 Follow your recommended screening schedule.
o Your screening scheduled will depend on the stage of your cancer and other
aspects of your medical history.
o You will mostly likely have a colonoscopy one year after surgery. Then another
colonoscopy every three years.
o At the time of your appointments, you may do routine blood work so your doctor
can check your overall health.
o For the first few years following treatment, your doctor may also recommend
computerized tomography (CT) scans every few months. A CT scan is an
imaging test that takes multiple x-rays from different angles to create a 3-D
image of organs and tissues.
o Annual bloodwork may be recommended as colorectal surgeries can have an
effect on metabolism. These lab values can check to make sure you are getting
all the essential nutrients and electrolytes your body needs.

If you have a colostomy from treatment, you will have special follow up with an
enterostomal therapist to teach you how to care for your ostomy.
o If your ostomy is temporary, you will have a follow-up procedure to remove the
ostomy and reconstruct your colon.

If you change your primary care physician, make sure your new doctor has all your
medical records and history.
 Tell your doctor about any side effects.
Survivorship

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o Some side effects occur after treatment ends. Let you healthcare team know of
any and all changes so they can help you manage them effectively.
 Keep your health insurance if at all possible.
o Follow-up care, especially imaging, can be very expensive if you do not have
health insurance.
Survivorship Nutrition
Once cancer treatment is complete it is time to restore and rejuvenate the body by feeding it
with the best foods for optimal nutrition. Nutrition status, physical activity, and body weight all
play a role in preventing cancer recurrence. Here are some guidelines to follow while adopting
a new lifestyle now that cancer treatment is over.

Eat a wide variety of colors of fruits and vegetables every day.
 Fruits and vegetables contain phytochemicals that fight against cancer. Each color
contains a different phytochemical. A wide variety of colors introduces more types of
these cancer fighting chemicals into the body.
 Choose organic varieties when available to limit exposure to chemicals and
pesticides. Wash all fruits and vegetables very well.
 Frozen fruits and vegetables are a great alternative to fresh and are easy to have
available when time for shopping is limited.

Choose complex carbohydrates for increased energy.
 Select complex carbohydrates like whole grains (oats, wheat, brown rice, whole grain
pasta) and whole fruits and vegetables.
 Complex carbohydrates are digested slowly due to their high fiber content, providing
sustained energy.
 Choose grain products that have whole wheat or a whole grain flour listed as one of the
first 3 ingredients.
 Avoid highly processed and refined grains (white enriched flour, baked goods, snack
foods, sweets).
 A serving of whole grain is one slice of bread, ½ cup of cooked rice or pasta, and ½ cup
of whole grain cold cereals and oatmeal.

Choose lean protein most of the time.
 Choose lean proteins that include beans, eggs, white meat chicken and turkey, and
fresh fish (not farm raised). When available, select organic and locally farmed. Other
good sources of protein are nuts, and tofu.
 Limit red meat to less than 18 ounces per week. Red meat includes beef, pork, and
lamb. For reference, one ounce of meat contains 7 grams of protein. To make sure that
you are getting enough protein, aim to eat a source of protein at every meal.

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Incorporate good fats into meals and snacks.
 Eliminate fried foods and eat foods that are high in omega-3 fatty acids such as
avocados, fish, and nuts.
 Avoid trans fats and avoid foods containing partially hydrogenated oils.

Limit sweets and simple sugars. Avoid artificial sweeteners.
 Choose fruit to satisfy cravings for sweets. Sweets provide our body with empty calories
and no nutritional value.
 Stevia is a plant-based natural sweetener that is an acceptable alternative to sugar, or
artificial sweeteners like aspartame sucralose, and saccharin.

Drink plenty of water.
 Staying hydrated is essential to rejuvenating the body. Too much caffeine may lead to
dehydration.
 Green tea and white tea are also good beverage options for staying hydrated.
 Aim for 64 ounces of caffeine free fluids per day. If you are not drinking any water, start
slowly and gradually increase water intake.

Eat consistently throughout the day to avoid overeating.
 Five to six small meals per day eaten every 2-3 hours help to keep blood sugar levels
more stable.
 Smaller, more frequent meals help with weight management by encouraging metabolic
rate to increase.
 Smaller, more frequent meals allow for better absorption of nutrients.

Achieve and maintain a healthy body weight for your height.
 Eat healthy by following the guidelines on this handout.
 Consult with a registered dietitian to determine individual energy needs and a realistic
goal weight.
 Monitor food intake and measure portion sizes.
 Begin to track food intake in a journal.

Exercise

If not currently exercising, gradually work toward 45-60 minutes daily. This can be split
up into 10 or more minute increments to make it more possible when time is a factor.
 Be realistic and start slowly. A regular exercise program may help to minimize stress
and depression.
 Choose an enjoyable activity. Enlist a friend or relative as an accountability partner.

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Nutrition Supplements
 Choose food first as the primary source for vitamin and minerals. Ask a registered
dietitian for guidance on vitamins, minerals, and other nutrition supplements.
 Do not rely on supplements for cancer prevention.

Drink alcohol in moderation, if at all.
 Alcohol is a contributing factor to many types of cancer.
 Alcohol provides the body with calories but not any nutrients.
Fear of Recurrence
Many believe that once treatment ends, the cancer journey is over, but that’s not the
case. Many cancer survivors struggle with the fear of recurrence. What if my cancer comes
back? What if my cancer spreads? For some, these fears can become overwhelming even
years into remission. These fears are completely normal, but there are things you can do to try
to manage them.
Take charge of what you can.
You may feel afraid because of the lack of control you have over the situation. To take back
some control in your life, try making positive changes.
 Talk to a registered dietitian about developing a survivorship nutrition plan. Good
nutrition can reduce your chance of recurrence and make you healthier all around.
 Start an exercise program. Exercising is not only good for your body; it is also good for
your mind. Exercising releases endorphins, natural chemicals that make you feel
happier. Many people also say exercising helps clear their minds and lower stress.
Always talk to your doctor before starting any exercise program.
 Stay on top of your screenings and checkups. At the end of your treatment, work out a
screening and checkup plan with your oncologist. What kind of scans or tests to do you
need? How often do you need them?
Take a deep breath.
If you feel yourself starting to get worked up, close your eyes, take a deep breath, and count to
ten. This may seem like silly or old advice, but taking a second to gather your thoughts can
make you feel a lot better.
Try meditation or visualization. Find a quiet, comfortable spot in your home. Take a few
moments to yourself to breathe deeply and reflect on the positive things in your life. Think
about some of your goals, even simple ones, and imagine yourself reaching them. In the rush
of everyday activities, we sometimes forget to just breathe.

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Find a hobby.
Hobbies can be a great source of entertainment and can also take your mind off of negative
things. Try one of the hobbies listed below or make up one of your own. Find something that
you enjoy and are passionate about.
 Knitting
 Cooking
 Painting
 Hiking
 Photography
 Writing
 Yoga
Volunteer.
Volunteering can be a worthwhile way to pass your free time and make a difference in your
community. Is there a cause you are passionate about? Education, the environment, animals.
To find a variety of volunteer opportunities in your neighborhood,
visit VolunteerMatch.org or Volunteer.gov.
A quick word of caution: For some, volunteering for a cancer support organization may hit too
close to home. Consider how it may affect you to be in this environment with constant
reminders of your experience. You need to do what is best for you. If you are unsure how it
may affect you, volunteer once before committing more time.
Talk about it.
You may find it helpful to talk to someone. It can be especially comforting to connect with other
survivors. Hearing other survivors’ stories can show you what you are feeling is normal, and
you are not alone. You may also be able to help someone else by sharing your story. Here are
some options for connecting with other survivors:
 Support Groups
o Cancer Support Community hosts support groups around the country.
o Visit cancersupportcommunity.org or call (888) 793-9355.
 Ask your healthcare team about other groups in your area or at your hospital.
 One-on-One Partnering Organizations
o These organizations connect you with a fellow survivor. Usually the connections
happen via phone.

Imerman Angels
o Visit imermanangels.org or call (877) 274-5529.
 Cancer Hope Network
o Visit cancerhopenetwork.org or call (800) 552-4366.
 Survivor Retreats
o Epic Experience offers outdoor adventure retreats to adults with a past cancer
diagnosis. Activities are based on the season.
o Visit epicexperience.org or call (855) 650-9907.

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 First Descents hosts retreats for young adults (18-39) to learn to rock climb, kayak, or
surf.
o Visit firstdescents.org or call (303) 945-2490.
Educate yourself.
Knowledge is power. Talk to your oncologist about your fear of recurrence. Here are some
questions to ask:
 What are my chances of recurrence?
 What can I do to lower my risk?
 What signs do I need to look for to know if my cancer has returned?
Armed with the answers to these questions you can better understand your situation and
minimize fear of the unknown.
If you do face a recurrence, remember that every survivor’s situation is different. With clinical
trials and new medications, there may be many treatment options available. Not all
recurrences are equal.
Know what triggers your emotions, and avoid it.
Do movies or TV shows that address cancer upset you? Don’t watch them. Does the sight of
the sweatshirt you wore on treatment days bother you? Throw it out or donate to a clothing
bank. Do you get especially anxious around scan days? Ask a friend to go to lunch with you.
If you can identify the objects or activities that trigger negative feelings, you can make a
special effort to avoid them.
Don’t dismiss your fear.
It is normal and understandable to fear recurrence. A cancer diagnosis is a scary thing. If
you’ve already been through treatment, you know how difficult it can be. Don’t be too hard on
yourself. It is okay to be scared. It is okay to be upset. Admitting your feelings can be an
important first step to managing your emotions.
Remember what works for other people may not work for you. Try a few different things. Once
you find an activity that makes you feel at ease, be sure to include it in your schedule. Take
time for yourself.
If your fear of recurrence becomes overwhelming or interferes with your day-to-day activity,
talk to your doctor. You may need individual counseling from a medical professional. Your
doctor can make a recommendation for you.
Immunizations for Cancer Survivors
What are immunizations?
Immunizations help your body build a resistance to specific diseases. Most immunizations
work by introducing a small, safe amount of the disease to your immune system. This way if
you are ever exposed to the disease, your body’s immune system already knows how to fight
it. Most immunizations are vaccines given as a shot or series of shots.

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Many people receive one-time immunizations when they are children for diseases such as
chickenpox. Some immunizations, such as tetanus shots, need boosters to keep them
effective. Other immunizations, such as flu vaccines, need to be received annually.
What are the risks of vaccines?
As with any treatment or medication, vaccines can cause side effects. Each vaccine carries
risk for different side effects. Most side effects are minor such as pain where you receive the
shot and mild fever. There are risks for serious side effects, but vaccines are carefully tested
for safety. In most cases, the great benefits of vaccines outweigh the minor risks. To learn
more, visit the Centers for Disease Control and Prevention (CDC) at www.cdc.gov. Talk to
your healthcare team about the risks and benefits of vaccines to determine what is best for
you.
I’m a cancer survivor; what immunizations do I need?
For cancer survivors, immunizations are especially important because cancer treatments
weaken the body’s immune system. Below is the immunizations schedule recommended by
the CDC for people with weakened immune systems, such as cancer survivors.
Vaccine
Schedule
Influenza (flu)
Annually
Tetanus, diphtheria, pertussis (Td/Tdap)
One Tdap vaccine with Td booster every 10
years.
Varicella (chickenpox)*
Should NOT get vaccine**
HPV vaccine (women and men)*
3 doses through age 26
Zoster (shingles)
Should NOT get vaccine**
Measles, mumps, rubella (MMR)*
Should NOT get vaccine**
Pneumococcal (PCV13)
1 dose
Pneumococcal (PPSV23)
1 or 2 doses
Meningococcal
1 or more doses
Hepatitis A*
2 doses
Hepatitis B*
3 doses
Source: Center for Disease Control
* These vaccines are only for adults who did not get them as children.
** If you received these vaccines before your cancer diagnosis, there is no harm done. In fact,
it is good that you are protected from these diseases. If you have not received these vaccines,
it is not safe to receive them with a weakened immune system.
If you are planning to travel outside of the United States, check the recommended vaccines for
where you are going. You may need additional immunizations.
Always consult with your oncologist before receiving any vaccine.

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What else do cancer survivors need to know about immunizations?
Influenza (Flu)
If you are a cancer survivor, the CDC recommends getting the annual flu vaccine. However,
only get the flu shot; do NOT get the nasal spray version. The nasal spray version contains live
viruses so it is not safe for people with a compromised immune system.
Caregivers or anyone living with a cancer survivor should also receive the flu vaccine to lower
the risk of infection.
Pneumococcal
There are two pneumococcal vaccines: PVV13 and PPSV23. For cancer survivors, doses of
each may be needed. Ask your healthcare team about the best pneumococcal schedule for
you.
Meningococcal, Hepatitis A and B
These vaccines are recommended for adults with certain jobs, lifestyles, or other health factors
that increase their risk of these diseases. Your healthcare team can tell you if you are at a
higher risk.
Varicella, Zoster, and MMR
As shown in the chart above, people with a compromised immune system, such as cancer
survivors currently or recently out of treatment, should NOT receive these vaccines.

Smoking Cessation
Why is smoking bad?
Smoking increases your risk for heart disease, stroke, and emphysema. Smoking also
increases your risk for a number of cancers, including:
 Lung
 Oral
 Nasal and Paranasal
 Throat
 Esophageal
 Bladder
 Kidney
 Pancreatic
 Ovarian
 Cervical
 Colorectal
 Stomach
If you already have a cancer diagnosis, smoking can increase your risk of recurrence.

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Why should I quit?
Quitting smoking has almost immediate benefits. Here are some of the benefits of quitting
smoking:
Time Since Quitting
Benefit
20 minutes
Blood pressure and heart rate drop
12 hours
CO2 levels in blood stream return to
normal*
3 months – 9 months
Circulation and lung function improve
1 year
Risk of heart disease cut in half
5 years
Risk of mouth, throat, esophageal, and
bladder cancer cut in half
10 years
One-half as likely to die from lung cancer,
and risk of laryngeal and pancreatic
cancer decreases
15 years
Risk of heart disease is the same as a
non-smoker’s
Source: smokefree.gov
*If the CO2 (carbon dioxide) levels in your bloodstream are high, your lungs have to work
harder to return these levels to normal. When you exhale, CO2 leaves your body.
How can I quit?
The first step is to talk to your healthcare team about the best quitting strategies for you.
With smoking, your body builds up a dependency on nicotine, a chemical found in tobacco. As
you quit smoking, your body will go through withdrawals from nicotine. Some common
symptoms and side effects of withdrawal include:
 Cravings
 Feelings of sadness
 Stress and anxiety
 Difficulty sleeping
 Restlessness
 Weight gain
Here are some tips to help you manage the side effects of withdrawal:
 With your doctor’s permission, you may wish to use nicotine replacement therapies
(NRT).
o NRTs give you a small, decreasing dose of nicotine without smoking to help you
wean yourself off nicotine and minimize withdrawal symptoms.

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o NRTs come in many forms such as gum, lozenges, inhalers, and patches.
o Some NRTs are available without a prescription, but always talk to your
healthcare team first.
o Other prescription medications are available to help you quit. Check with your
doctor to see if these may be right for you.
 Tell your friends and family that you are trying to quit.
o They can support you and hold you accountable.
o Ask a friend or family member you trust to be your “sponsor.” If you feel the urge
to smoke, you can call them to talk until the craving passes.
o If your friends or family members smoke, ask them not to smoke around you and
not to offer you cigarettes. This will only make achieving your goal harder.
 Join a support group or online support group to connect with other people trying to quit.
 Change your routine.
o For example, if you always have a cigarette with your coffee, find a new morning
routine. Try watching the news with your coffee, or replace your cigarette with a
healthy snack.
 Know your triggers and have a plan.
o What triggers your cravings—stress, food, other people smoking?
o Avoid triggers if at all possible.
o If you encounter a trigger, have a plan to keep yourself from smoking such as
chewing gum, counting to 10, or calling a friend.

If you have a setback, don’t be too hard on yourself. Get back on track as soon as
possible. However, do not use a slip as an excuse to start smoking regularly again.
 Do not use other tobacco products or e-cigarettes as a replacement for smoking.
o Other tobacco products can also increase your risk for cancer and diseases.
o E-cigarettes have not been studied enough to know their safety. The chemicals
inhaled with e-cigarette use may have their own risks.
Resources for Quitting
Smokefree.gov
Call (800) Quit-Now to connect with your state’s helpline.



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The following worksheets can help you organize your life and keep track of all your information
during your cancer journey. If you visit My PearlPoint at my.pearlpoint.org and sign up for a
personalized dashboard, you can print as many worksheets as you need.

 My Diagnosis
 Questions for Your Healthcare Team
 My Medical History

Immunizations Record
 Appointment Notes
 My Healthcare Team Contact List
 Treatments and Side Effects Logs
 Laboratory Flow Sheet
 Budgeting Worksheets
 Calendars

Worksheets

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My Diagnosis

Your healthcare team will give you details about your cancer. Ask your healthcare team
to fill out this form. Note: Some questions to not apply to some cancers.
Tumor location (ask your healthcare team to draw the location of your tumor):


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Tumor size and characteristics:


Stage:


Grade:


Genetic considerations:


Metastasis:


Other information:




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Questions for Your Healthcare Team

When you are diagnosed with cancer, you may feel overwhelmed with information. Ask
your oncologist the following questions to make sure you have the answers you need.

What is my diagnosis?
______________________________________________________________________
______________________________________________________________________
_______________________________________________________
What stage is my cancer? What is my prognosis?
______________________________________________________________________
______________________________________________________________________
_______________________________________________________
What are my treatment options? What would you recommend?
______________________________________________________________________
______________________________________________________________________
_______________________________________________________
Am I eligible for a clinical trial?
______________________________________________________________________
______________________________________________________________________
_______________________________________________________
What are the long-term and short-term side effects of treatment? How will these affect
my normal activities?
______________________________________________________________________
______________________________________________________________________
_______________________________________________________
How can I manage these side effects?
______________________________________________________________________
______________________________________________________________________
_______________________________________________________
How can I keep myself as healthy as possible during treatment?
______________________________________________________________________
______________________________________________________________________
_______________________________________________________




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Will I be able to have children? What are my options to preserve fertility?
______________________________________________________________________
______________________________________________________________________
_______________________________________________________
Where can I find help with financial concerns?
______________________________________________________________________
______________________________________________________________________
_______________________________________________________
Where can I find help with lodging or transportation?
______________________________________________________________________
______________________________________________________________________
_______________________________________________________
What will my follow-up care plan include?
______________________________________________________________________
______________________________________________________________________
_______________________________________________________




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My Medical History


Your healthcare team will need to know your medical history so they can determine the care
that is best for you. They may have specific forms for you, but this form will help you collect
basic information you will need before your appointments.

Basic Information

Name:
Birthdate:
Phone Number(s):
Address:

Social Security Number:
Employer:
Spouse’s Name:
Spouse’s Phone Number:
Emergency Contact:
Emergency Contact’s Phone Number(s):

Primary Care Physician

Primary Care Physician:
Practice:
Phone Number:
Address:














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My Medical History (continued)


Past Medical History


In the past, have you been diagnosed with any of the following?

Circle all that apply.


Anemia Arthritis Asthma Blood Clots Cancer Colitis Concussions Depression

Diabetes Heart Disease Hepatitis High Blood Pressure High Cholesterol HIV/AIDS

Impaired Mobility Irritable Bowel Syndrome Kidney Disease Liver Disease

Lung Disease Migraines Other STDs Urinary Tract Infections Other_____________



List any past surgeries, imaging, hospitalizations, or other major procedures you’ve had in the
past.

Procedure
Description
Date




































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My Medical History (continued)


Family Medical History

Has anyone in your family experienced any of the following? If so, who?


Relation
Asthma

Blood Clots

Cancer (List Cancer Type)

Depression

Diabetes

Heart Disease

High Blood Pressure

High Cholesterol

Blood Clots

Low Blood Pressure

Kidney Disease

Lung Disease

Irritable Bowel Syndrome

Liver Disease

Colitis

AIDS/HIV

Other

Other


Do you know any other pertinent family medical history?
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________








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My Medical History (continued)


Current Medications and Allergies

Please list all current medications, including any vitamins, supplements, or over-the-counter
medications.

Medication Name
Dosage and Time
Reason Taken









































































List all allergies.
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________







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My Medical History (continued)


Current Issues

Are you experiencing any of the following? Circle all that apply.


Bloating Constipation Diarrhea Dry Mouth Fatigue Gas High Blood Sugar Nausea

Pain Unable to Sleep Vomiting Weight Gain Weight Loss Other______________


Please describe any problems you are having.
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________


Are you able to go about daily activities normally? Yes or No


Do you feel like your normal self? Yes or No



What questions do you have for the doctor?

___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________










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My Medical History (continued)


Insurance Information

Be sure to take all insurance and prescription cards with you to your appointment.

Insurance Provider:
Policy/ Group #:
Policy Holder’s Name:
Patient’s Relation to Insured:

Secondary Insurance Provider:
Account Number:
Policy Holder’s Name:
Patient’s Relation to Insured:



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My Immunization Record
For cancer patients, immunizations are especially important because cancer treatments
weaken the body’s immune system. Immunizations help your body build a resistance to
specific diseases. Most immunizations work by introducing a small, safe amount of the disease
to your immune system. This way if you are ever exposed to the disease, your body’s immune
system already knows how to fight it. Ask your healthcare team which immunizations you
need. Use this chart to keep track of your immunization record.
Vaccine
Date Given
Next Date Due
Comments/Reactions
Tetanus



Diphtheria



Pneumococcal
Influenza



MMR



Hepatitis B



Hepatitis A



Influenza (Flu)



Other



Other








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Appointment Notes
Take notes on all the new information your healthcare team provides at appointments.
Write down any new instructions, medications, treatment plans, etc., so you can
reference them later.
Date: ______________ Doctor: __________________

Questions:______________________________________________________________
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________

Notes:_________________________________________________________________
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________

Plan:__________________________________________________________________
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________

List lab work, imaging, or other tests.
Test & Date
Purpose
Results
Test:
Date:


Test:
Date:


Test:
Date:



Next Appointment: ____________________________________________________



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My Healthcare Team Contact List

Your healthcare team may include many different doctors, nurses, and specialists.
Keep all your important contact information in one easy-to-find place.


Name
Contact Info
Caregiver


Phone:
Phone:
Fax:
Email:
Address:


Primary Care
Doctor


Phone:
Phone:
Fax:
Email:
Address:


Medical
Oncologist


Phone:
Phone:
Fax:
Email:
Address:


Radiation
Oncologist


Phone:
Phone:
Fax:
Email:
Address:






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My Healthcare Team Contact List (continued)


Name
Contact Info
Surgeon


Phone:
Phone:
Fax:
Email:
Address:


Nurse Navigator


Phone:
Phone:
Fax:
Email:
Address:


Hospital


Phone:
Phone:
Fax:
Email:
Address:


Pharmacy


Phone:
Phone:
Fax:
Email:
Address:







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My Healthcare Team Contact List (continued)

Name
Contact Info



Home Health

Phone:
Phone:
Fax:
Email:
Address:





Physical Therapist

Phone:
Phone:
Fax:
Email:
Address:




Phone:
Phone:
Fax:
Email:
Address:




Phone:
Phone:
Fax:
Email:
Address:






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Treatments and Side Effects Log

Keeping track of your treatments, medications, side effects, and overall well-being is very
important during your cancer journey. How your nutrition, activities, and medications affect the
way you feel can provide insight for you and your healthcare team.

Date(s)/Week: ___________

Treatments or procedures:
Include specific dates, descriptions, and medications given.
___________________________________________________________________________
_________________________________________________________________
______________________________________________________________________
______________________________________________________________________
___________________________________________________________________________
_________________________________________________________________

Foods Eaten:
Breakfast
Lunch
Dinner
Snacks





























Activity or Exercise:
Activity
Duration




















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Treatments and Side Effects Log (continued)

Medications/ Vitamins/ Supplements:
Name
Dosage & Time
Reason Taken
Prescribed By





































































































































Current Weight:_______ Physical Well-Being*: _______ Emotional Well-Being*:______
*On a scale of 1-10. 10 = feeling your best. 1= feeling your worst.




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Treatments and Side Effects Log (continued)

Side Effects:
Record all side effects experienced by checking mild, moderate, or severe. If none, leave blank.
Side Effect
Mild
Moderate
Severe
Change in taste and smell



Constipation



Diarrhea



Difficulty swallowing



Dry mouth



Fatigue



Feeling full quickly



Gas and bloating



Hair loss



Lactose intolerance



Loss of appetite



Lymphedema



Nausea



Neuropathy



Pain



Skin changes (blisters, rashes, itchy, etc.)



Sore mouth, throat, or tongue



Weight loss



Weight gain




For help managing side effects, download PearlPoint’s new Cancer Side Effects Helper app to
your smart phone.

Notes:
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
____________________________________________________________

To keep track of this information online, visit My PearlPoint (my.pearlpoint.org) to create
a personalized dashboard. On your dashboard, you can virtually track your well-being
and save notes on your progress.



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Laboratory Flow Sheet
Your healthcare team monitors the effects and toxicity of chemotherapy treatments by
watching your Complete Blood Count and Differential (CBC) results. These ranges are listed
on the report your doctor receives after routine blood work. Use this report or ask your
healthcare team to help you fill out the sheet below so you can monitor you CBC.
If you notice a change in levels, ask your healthcare team for an explanation. Lab work will be
ordered for your needs. Lab work may vary slightly between males and females and between
different labs.

Lab Values
Date








Weight








CBC
WBC








ANC








HGB








HCT








PLT








RBC








MPV








MCV








MCH








MCHC








RDW








Differential








Other



























































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Lab Reports and Terminology
Complete Blood Count and Differential
Your WBC, RBC, HGB, HCT, PLT, and MVP will be monitored throughout the course of your
treatment. These lab results give important information about how your body is affected by the
chemotherapy.
WBC: white blood cells or leukocytes. White blood cells help the body to fight infections.
There are several different types of white cells that have different functions. The WBC is
the total of all the white cells counted.
RBC: red blood cells. These are also called erythrocytes or corpuscles. Immature red
blood cells are called reticulocytes. RBCs carry oxygen from the lungs to the tissues of
the body.
HGB: hemoglobin. Hemoglobin is the pigment of the red blood cells that actually carries
the oxygen.
HCT: hematocrit. This is the percentage of RBCs in the volume of the whole blood in
your body.This is also called packed cell volume or PCV.
PLT: platelets or thrombocytes. These cells help the blood to form a clot when your
body has had a trauma or is bleeding.
MCH, MCHC, MCV, RBC, HCT, HGB all give us information in the diagnosis of anemia.
Anemia is defined as a lack of the proper amount of red blood cells.
MVP: mean platelet volume. This is the average volume of platelets. A high MPC
means there is the presence of larger platelets. A low MPV indicates the platelets are
smaller than normal.
MCV: mean corpuscular volume. This I the calculation of the average volume of the
RBC and is determined by the hematocrit count divided by the RBC count.
MCH: mean corpuscular hemoglobin. This is the calculation of the average weight of
Hgb of each RBC. This is determined by the hemoglobin divided by the RBC.
MCHC: mean corpuscular hemoglobin concentration. This number tells us the
concentration of hemoglobin in an average RBC. It is calculated by dividing hemoglobin
by hematocrit.
RDW: red cell distribution width. This is the numerical expression of the degree of
variation in the volume of the population of red blood cells. Normally, as new normal
sized cells are produced, the RDW increases.

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Differential: a differential count calculates the total white blood cells and categorizes
their different types. The differential is reported as a percentage and an absolute
number by type of cell.
Other Terminology
Granulocyte: white blood cells with a grainy appearance under a microscope.
Neutrophils, eosinophils, and basophils are all granulocytes. Neutrophils are further
classified as either bands or segs. This defines the level of maturity of these cells.
These cells fight infection.
Polymorphonuclear leukocytes: also called PMNs or Polys. These refer to
granulocytes which are neutrophils, eosinophils, and basophils. The name means
“possessing a nucleus (or center) consisting of many parts or lobes.” This is another
descriptive name for white blood cells.
Blast, myelocyte, metamyelocyte, progranulocyte: these are immature WBCs that
are not normally in the peripheral blood circulation.
ANC: absolute neutrophil count. Neutrophils are white blood cells that help the body
fight infection. This number is used to monitor neutropenia and the effects of
chemotherapy and colony stimulating factors.






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Budgeting Worksheets

Sources of Income:
Expected:
Actual:
Salary


SSI/SSDI


Employment Benefits: Short-Term
Disability


Investments


Total:



Have you had stop working due to your diagnosis? Have you considered applying for Social
Security Disability Insurance?
Monthly Expenses:
Expected:
Actual:
Mortgage/Rent


Energy Bill/ Gas Bill


Water Bill


Groceries


Credit Cards


Car Payment


Gasoline


Loans


Home/Cell Phone


Cable


Housecleaning/Landscaping


Child Care


Insurance Premiums (health, life,
home, etc.)


Clothing


School


Other Fees


Total:



To reduce these costs, have you considered:
- Are you eligible for Food Stamps?
- Are you able to get assistance with your electric bill from Low Income Heating Energy
Assistance Program (LIHEAP)?
-
Is there a local free cleaning service in your area?
- Do you qualify for government assistance for housing, child care, or cell phone?



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Budgeting Worksheets (continued)

Medical Expenses:
Expected:
Actual:
Insurance Deductible


Co-Payments


Prescriptions


Transportation (parking fees, flights,
etc.)


Medical Supplies


Caregiving/Home Care


Supplements


Mental Health Care


Legal Services


Travel


Assistance Received:



Possible sources of assistance:
- Have you considered a prescription assistance resource like NeedyMeds to reduce
costs of prescriptions? Call (800) 530-6987 or visit www.needymeds.org.
- Are you eligible for co-pay assistance based on cancer type?
- Can you reduce transportation and gas costs through resources like Road to Recovery
or CancerCare?
o For Read to Recovery call the American Cancer society at (800) 227-2345 or
visit www.cancer.org.
o Call CancerCare at (800) 813-HOPE (4673) or visit www.cancercare.org.
-
Is there a sliding scale resource in your area for mental health services?


Expected:
Actual:
Total Income:


Total Expenses (Monthly/Medical):


After Expenses: (Total Income – Total
Expenses = After Expenses)








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Budgeting Worksheets (continued)
Financial Assistance
When applying for financial assistance, keep track of your applications (as outlined in the
chart below) to make sure you submit everything and hear back from the programs in a
timely manner. You may have to follow up with some programs. If a program provides
reoccurring support, you will want to make note of that in the frequency column.

Assistance Organization: Date
Applied:
Status:
Frequency: Amount:
Need:
Ex: CancerCare

2/11/14
Applied
One-Time
$125
Gas

















































































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Calendars

Month: __________________
Sunday
Monday
Tuesday Wednesday Thursday
Friday
Saturday



































































Notes:
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________



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Calendars (continued)

Week: ______________________________________


Monday





Tuesday





Wednesday





Thursday





Friday





Saturday/Sunday






Notes:
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________


Appointment Calendar by Week

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Appointment Details

Use this sheet to plan the details of your appointments in advance.

Date:
Time:
Location:


Provider:
Reason:
 Office visit
 Imaging
 Lab work
 Surgery
 Treatment
 Other _____________

Transportation:
___________________________________________________________________________
___________________________________________________________________________
Lodging:
___________________________________________________________________________
___________________________________________________________________________
Notes:
___________________________________________________________________________
___________________________________________________________________________





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Additional Resources

My PearlPoint
At My PearlPoint, a website for adults impacted by cancer, you can find more
educational, nutritional, and practical information to help you through your cancer
journey. You can also find recipes, videos, survivor stories, and more. Create a
personalized dashboard to save all the resources you find in one convenient location.
mypearlpoint.org
(877) 467-1936 X 101
guidance@pearlpoint.org

American Cancer Society
For more than 100 years, the American Cancer Society (ACS) has worked relentlessly to
save lives and create a world with less cancer and more birthdays. Together with millions
of our supporters worldwide, they help people stay well, help people get well, find cures,
and fight back against cancer.
www.cancer.org
(800) 227-2345

National Cancer Institute
A collection of information run by the National Institutes of Health.
www.cancer.gov
(800) 4-CANCER

Colon Cancer Alliance
Colon Cancer Alliance is the leading national patient advocacy organization dedicated to
increasing screening rates and survivorship.
www.ccalliance.org
(877) 422-2030