/clinical/,/clinical/pted/,/clinical/pted/hffy/,/clinical/pted/hffy/cancer/,

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UWHC,UWMF,

Clinical Hub,Patient Education,Health and Nutrition Facts For You,Cancer, BMT, Hematology

Cancer Survivorship (7834)

Cancer Survivorship (7834) - Clinical Hub, Patient Education, Health and Nutrition Facts For You, Cancer, BMT, Hematology

7834











Cancer Survivorship


Carbone Cancer Center
























Nutrition ------------------------------------------------------------------------------ 2

Exercise ------------------------------------------------------------------------------ 8

Sleep ---------------------------------------------------------------------------------- 10

Tobacco ------------------------------------------------------------------------------ 11

Sexual Health ---------------------------------------------------------------------- 12

Spirituality -------------------------------------------------------------------------- 13

Common Concerns -------------------------------------------------------------- 14

Seeking Help ----------------------------------------------------------------------- 17

Symptom Management---------------------------------------------------------- 18

Community Resources ---------------------------------------------------------- 25











Your health care team may have given you this information as part of your care. If so, please use it and call if you have any questions. If this
information was not given to you as part of your care, please check with your doctor. This is not medical advice. This is not to be used for
diagnosis or treatment of any medical condition. Because each person’s health needs are different, you should talk with your doctor or others
on your health care team when using this information. If you have an emergency, please call 911. Copyright © 7/2017. University of Wisconsin
Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#7834

2

Nutrition


A healthy way of life is good for everyone, including those who have had cancer. Nutrition and activity are both part of a
healthy lifestyle. If you would like to know more about nutrition and cancer survivorship, please feel free to make an
appointment with a dietitian by calling Cancer Connect at 1(800) 622-8922.

General Guidelines for Cancer Survivors
More people are living long lives after cancer treatment. Eating a balanced, healthy diet and being active will help you
be healthy. The following guidelines are based on those of the American Institute for Cancer Research.

ξ Eat lots of different vegetables, fruits, whole grains and beans.
Plant foods like vegetables, fruits, whole grains and beans have fiber and other nutrients that may lower
your risk of cancer.

For good health, plant foods should make up most of your meal. This means that you should fill at least 2/3 of
your plate with vegetables, fruits, whole grains and beans at each meal.

ξ Limit red meats and avoid cured meats.
Limit red meat, lunch meat, bacon, sausage and hot dogs. Instead choose lean poultry, like chicken or turkey
without skin; fish; beans or lentils.

ξ Limit salty foods.
Eating too much salt (sodium) can harm your health. The amount of salt you eat should be less than 2,400
milligrams (mg) each day. We need much less than this. Most people in the United States take in more than 2,400
mg, but there are easy ways to eat less sodium.

Most of the salt we eat comes from processed foods. We may not know these foods are high in salt because they
may not taste “salty.” To see how much salt is in a food, look for the milligrams of sodium on the Nutrition Facts
label. Watch out for breakfast cereals, bread, frozen meals, pizza and chips. Also, check the amount of sodium in
canned foods like soups and sauces. Stay away from cured meats. Even sweet foods, like cookies, can have lots
of salt.

ξ Stay away from sugary drinks.
Limit high-calorie foods that are mostly sugar and fat and low in fiber. You can avoid extra calories if you choose
healthy drinks like water or unsweetened tea and coffee. Foods that are low in calories such as apples and
watermelon are high in fiber and water.

Remember that sugary drinks like soft drinks and flavored juice drinks can have a lot of calories. Natural fruit
juices can count as a fruit or vegetable serving, but it’s best to limit yourself to 1/2 cup per day.

ξ Limit drinks with alcohol to two for men and one for women each day.
Drinks with alcohol are high in calories and low in nutrients. In other words, they are “empty calories.”
Too much alcohol may increase your chance of having cirrhosis of the liver, obesity, heart disease and some
cancers.

3


ξ Be as lean as you can without becoming underweight.
Staying at a healthy weight is one of the best things you can do to decrease your chance of having cancer
or a recurrence. The Body Mass Index (BMI) is a tool to help you know if you are at a healthy weight. Try
to be at the lower end of the healthy BMI range. When you are at a healthy weight, you feel better. You
also have less chance of getting cancer and having other health problems such as type 2 diabetes and
heart disease.

If you do not know your body mass index, check with a dietitian at the UW Carbone Cancer Center. A
good range for most people is a BMI between 18.5 and 25. If you know your weight and height, you may
also use an online tool to figure it out. aicr.org/reduce-your-cancer-risk/weight/tools_bmi_calculator.html

ξ Don’t use high-dose vitamin or mineral supplements to protect against cancer.
Most of the time, the best way to get vitamins is real food, not supplements. Healthy, whole foods have fiber,
vitamins and minerals that are good for you. With some types of cancer, your body may not be able to
absorb or use some nutrients the same way it did before you had cancer. In this case, you may need a
supplement. Ask a dietitian or your cancer care team if you think you need a supplement.

The U.S. government does not review the safety of dietary supplements. This includes all vitamins,
minerals and herbal products. It is best to use supplements that are reviewed by a group like one of these:

■ United States Pharmacopeia (USP) uspverified.org
To get the USP seal of approval on its product label, a company must ask USP to test its product for
quality, purity and potency. Many brand and generic supplements are USP Verified.

ξ ConsumerLab.com (CL) consumerLab.com
CL reviews supplements and puts a report on their website. Only people who have paid money to CL can
read the report. Brands that meet CL standards may have the CL seal of approval on their label.

ξ Natural Medicines Comprehensive Database naturaldatabaseconsumer.com
The group who produces this database reviews the scientific evidence of natural products. For each
product they review, they list the ingredients and note the health benefits, safety and possible side
effects.

Common Questions:

ξ What does it mean when food is “organic” and do I need it to be healthy?
Certified organic animal foods come from animals that are not given any hormones or antibiotics. Organic
plant foods are grown without pesticides or fertilizers. There are no national standards for organic seafood.

ξ Is organic food more nutritious?
No. The nutrient content of organic and non-organic foods is the same. The difference is how they are
produced. The American Dietetic Association states that the vitamin, mineral and antioxidant levels of
organic foods and non-organic foods are the same. A cookie is a cookie, whether or not it’s organic.

ξ So, why do people buy organic food?
The two main reasons are the environment and health. People are concerned about the chemicals used to
produce food. Some people say organic food tastes different, but this is not proven by any studies or
surveys.

4

ξ How do I know if a food is organic?
The USDA organic food label, which is a green and white circle, means that the food is at least 95
percent organic. Foods labeled “made with organic ingredients” must have at least 70 percent organic
ingredients.

ξ What is the soy and cancer debate?
Soy foods are common in Asian diets. The soy plant has beans that can be made into soy foods like tofu,
soy milk and soy powder. There is some debate about a nutrient in the soy bean called genestein.
Genestein is a hormone that helps soy plants grow like estrogen helps people grow.

Because high levels of estrogen have been linked to some types of breast cancer, researchers and
cancer doctors were once concerned that genestein in soy foods may raise estrogen levels or activity
when people eat soy foods.

Because greater amounts of soy may have some estrogen effects, breast cancer survivors should
not eat more than 3 servings per day of soy and soy isoflavones. Soy isoflavones are in
concentrated foods like soy powders and soy supplements. There is some research to suggest this
advice may also be good for all people who have had a hormone-sensitive cancer.

ξ What about calcium and vitamin D?
Calcium and vitamin D are important for all people. Calcium helps keep bones and teeth healthy. It also
helps with other body functions. Calcium is in foods like milk, yogurt, cheese, dark leafy greens and
canned salmon.

Vitamin D helps people use the calcium they eat. It is in fortified milk, milk products, fish and egg yolks.
We need sunlight so we can ”turn on” the vitamin D in our bodies. If you are older, live in the northern
part of the U.S., use sunscreen or have dark skin, you should have your doctor check your level of
vitamin D. You may not have enough.

The amount of calcium and vitamin D you need depends on your age and health history. Sometimes
cancer survivors should not have calcium or vitamin D supplements, so it is best to check with your
team.

Age Group Recommended Daily Intake*
Pre-menopausal women at least 1,000 mg calcium and 400-800 IU vitamin D
Women over 50, women with premature
ovarian failure and post-menopausal women
at least 1,200 mg calcium and 800-1,000 IU vitamin D
Men no more than 1,200 mg calcium and 800-1,000 IU vitamin D

*Do not take more than 2,500 mg calcium or 2,000 IU of vitamin D per day unless prescribed by your doctor.

ξ What calcium and vitamin D supplements are available?
There are different kinds of calcium supplements. The most common are calcium carbonate and
calcium citrate. The amount of “elemental” calcium in your supplement is important. “Elemental”
calcium is the kind of calcium that your body can use.

Some calcium supplements include vitamin D. If you do not get enough vitamin D from your
calcium supplement and the sun, you may need to take a vitamin D supplement. Choose one with
vitamin D3.

5

Other health problems
Do you have nutrition questions about other health problems like diabetes, heart disease, liver disease or kidney
disease? If so, you can make an appointment with a dietitian by calling UW Health at University Station at (608)
263-4360.

Resources
The American Cancer Society’s Complete Guide to Nutrition for Cancer Survivors: Eating Well, Staying Well
During and After Cancer book (second edition) can be bought from the American Cancer Society or through
amazon.com


American Cancer Society
1 (800) 227-2345
cancer.org
Academy of Nutrition and Dietetics
1(800) 877-1600
eatright.org
American Institute
for Cancer
Research 1(800)
843-8114
aicr.org National Cancer Institute
1(800) 422-6237
cancer.gov
Choose My Plate
choosemyplate.gov



References
American Institute for Cancer Research. American Institute for Cancer Research After Cancer Treatment.
Retrieved January 11, 2011, from aicr.org/site/PageServer?pagename=patients_survivors_after_treatment.

Toles M and Demark-Wahnefried W. Nutrition and the Cancer Survivor: Evidence to Guide Oncology
Nursing Practice. Seminars in Oncology Nursing. 2008:24 (3): 171-179.

Doyle C, Kushi LH, et al. Nutrition and Physical Activity During and After Cancer Treatment: An
American Cancer Society Guide for Informed Choices. CA. 2006; 56: 323-353.

Grant BL and Bloch AS, eds. 2010. Nutrition for Cancer Survivors. Georgia: American Cancer Society.

Schmitz KH, Courneya KS, et al. American College of Sports Medicine Roundtable on Exercise
Guidelines for Cancer Survivors. Medicine & Science in Sports & Exercise. 2010; 42 (7): 1409-1426.

Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Transition. Retrieved January 18,
2011, from iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition.aspx.

World Cancer Research Fund. Food, Nutrition, Physical Activity and the Prevention of
Cancer: a Global Perspective. Washington, D.C.: American Institute of Cancer Research,
2007.

6

How to Get Started with Healthy Changes
Take one step at a time. Do not try to change everything in one day. Because most of us have habits that are
hard to change, we often do better when we make one small change one day at a time.

To help you get started, take a look at your habits.

What’s on Your Plate?
Often Sometimes Rarely/Never
Two-thirds (or more) of my plate
is vegetables, fruits, beans and
whole grains.

■ Morning
■ Mid-day
■ Evening
I eat at least 3 cups of
vegetables and fruits each day.

I eat many different vegetables
and fruits.

One-third (or less) of my plate
is meat, poultry (like chicken)
or fish.

At least half the grains I eat
(bread, cereal and pasta) are
whole grain.

To help control my weight,
I eat moderate portions at home
and when I eat out.

I almost always get at least 30-
60 minutes of activity each day.

I rarely eat fat food, deep-fried
foods or foods with
high added fat.

I avoid or limit alcohol.


Adapted from the New American Plate. American Institute of Cancer Research

7

ξ Make an Action Plan
Use what you’ve learned from these pages to set goals and make your action plan. This guide can help
you. If you need more help, you can meet with a dietitian at the UW Carbone Cancer Center.
Visit uwhealth.org/nutrition for more information.

ξ Goal example
I will eat more vegetables.

ξ Action steps to make that happen
I will eat a mixed green salad with dinner four times per week.
I will eat baby carrots, celery or broccoli for snacks three times per week.

ξ Track progress example
Compare my portion sizes using Choose My Plate’s (choosemyplate.gov) sizes.
Keep a daily record of my plate amounts.
Record my activity in my daily calendar.

Goal A




Action steps to make that happen:

1)

2)

Goal B

Action steps to make that happen:

1)

2)

My plan to track progress

1)

2)

Making progress
Now that you have set goals, you are ready to put your plan into action.
ξ Put your plan where you can see it often.
ξ Check your progress at least once a week until your new habits are part of your life.
ξ If you find that reaching your goals is hard, think about why it is hard. What is getting in the
way? What can you do to get around it and reach your goals?

8

Exercise

Studies show that exercise is helpful for cancer patients and survivors. It is hard to create guidelines that are
good for everyone because everyone is different and there are many types of cancer treatments. As a cancer
survivor, you should check with your doctor before you start any type of exercise program. You can create a
plan together that meets your needs.

In 2010, the American College of Sports Medicine recommended that cancer patients and survivors do
moderate exercise like walking for at least 30 minutes a day on five days of the week. Exercise and physical
activity are helpful in many ways. They:
ξ Improve quality of life and help you feel better.
ξ Reduce stress and can increase your energy level.
ξ May reduce your chance of having different types of cancer.
ξ Lower your chance of having other health problems such as heart disease, high blood pressure,
diabetes and osteoporosis.
ξ Help to prevent weight gain when used with a healthy diet.

Getting started
Pick an activity you enjoy. Try to be active every day in as many ways as you can. Start slow—and don’t
overdo it. If you have never done much exercise, it will take some time for your body to get used to it and be
able to do more. If you do too much one day, you may feel tired and sore the next day. Your energy level will
vary from day to day, so don’t think you always have to do more than the day before. If you have never
exercised, don’t let that stop you. Start with 5 to 10 minutes of walking and build up gradually. Try other small
steps that add up—take the stairs, park at the end of the lot, walk around the store before shopping. Every
step counts! Gentle walking or swimming is fine for most people and you can get used to doing more, day by
day.

Moderate activity
Do at least 30 minutes of moderate activity on most days. Moderate activity includes brisk walking or cycling.
This exercise causes a slight increase in heart rate. If you are walking, you should be able to talk but not
sing. Other activities include yoga, dancing, mowing the lawn, digging in the garden and moderate swimming
or cycling. You can do two or three different activities for 10 to 15 minutes each to equal 30 minutes total.
Keep it fun! Make it a part of family, community, work or social life.

Vigorous activity
When you can, add some vigorous activity. This exercise makes you “huff and puff.” Talking between
breaths is hard. You use larger muscle groups so your heart rate is faster, your breathing is deeper and
faster and you sweat. Vigorous activity includes aerobics, circuit training, speed walking, jogging, fast
cycling/spinning and brisk rowing.

Vigorous activity helps improve your fitness level and decrease heart disease. One minute of this activity can
take the place of two minutes of moderate activity, if you want to do some of both.

Weight bearing exercises
Exercises such as running, rowing, yoga and strength training may help prevent osteoporosis (thinning of the
bones). Start slow—and increase your activity as the days go by. Notice how the exercise makes you feel and
don’t overdo it.

9


Limit time spent sitting
ξ Limit time spent just sitting watching TV or using the computer.
ξ Ride a stationary bike or walk on a treadmill when you watch TV.
ξ Use the stairs rather than the elevator.
ξ If you are able, walk or ride a bike to get where you are going.
ξ Exercise at lunch with your coworkers.
ξ Take a stretch or exercise break at work.
ξ Plan active vacations rather than driving—only trips.
ξ Wear a pedometer every day and increase your number of daily steps.

Check with your doctor
Before you start an exercise program, talk with your doctor. In some cases, you may need to take extra care. If
your cancer affects your bones, you may have a greater chance of breaking a bone. In this case, swimming and
exercising in water may be good ways for you to exercise. Water supports your body weight so your bones are
not stressed.

If you have had treatment (surgery or radiation) that has affected your lymph nodes or you have lymphedema, talk
with your doctor. You may want to wear a compressive garment when exercising. When you are done exercising,
you will need to check the area of your body that is affected for any increase in swelling. You will also need to
think about how that area of your body feels. For example, does it feel tired, heavy or tight after exercising? If you
have more swelling than normal or you don’t feel good, you may have done too much. If you think you’ve done
too much, do less the next time you exercise. If your symptoms don’t go away, you should talk with your doctor
about seeing a lymphedema therapist.

If you have pain or weakness, if your balance is off or you have trouble moving your joints because of treatment
for cancer, talk with your doctor. It may be helpful for you to see an occupational or physical therapist who has
worked with people who have had cancer treatment.

Get support
When you’re thinking about starting to exercise, you may want to check with local cancer support groups and
places like the YMCA for exercise options. If you feel you want to work with one person, a personal trainer who
has coached cancer survivors can help you develop an exercise plan. Include your family and friends in your
plans. They can help you to stay focused and make exercise more fun.

10

Sleep




It is common to have sleep problems after cancer treatment. You may have trouble falling asleep or staying
asleep. You may have changes in your sleep schedule or wake up often in the night.

If you have a sleep problem, be sure to talk with your doctor. He or she may suggest a sleep medicine if your
problem is severe or constant. Your doctor will also be able to tell if a sleep specialist might help you. You can
find more information about sleep problems online at: wisconsinsleep.org/sleepinformationresources.html

There are several non-medication strategies that can be helpful in solving your sleep problems:
Set a standard wake-up time. Use it every day even if you did not sleep well the night before.

Use your bed only for sleeping. Do not read, eat or watch TV in bed. Sexual activity is the one exception.

Go to bed when you are sleepy. It is hard to fall asleep if you do not feel sleepy.

Don’t worry, plan or problem solve in bed. If you find yourself “thinking too much” in bed, get up and stay
up until your mind quiets and you feel sleepy. When you go back to bed, get up again if sleep does not
come quickly.

Get up when you can’t sleep. When you can’t sleep for more than 20 to 30 minutes, get up and go to another
room. Sit by a dim light and try light reading, boring television or quiet music. Go back to bed when you think
you are sleepy enough to fall asleep. Get up and do it again if sleep does not come quickly. Do not use the
computer at night.

Don’t spend extra time in bed. Your sleep is more likely to be broken up the longer you spend in bed. It is
best to keep your time in bed close to the amount of time you actually sleep every night.

Avoid daytime napping. Napping may make it hard for you to sleep well at night. Taking naps in the late
afternoon or early evening are likely to cause the most problems with nighttime sleep.

Other tips:
ξ Limit caffeine and alcohol.
ξ Exercise often, but not close to bedtime.
ξ Plan quiet time before bed.
ξ Don’t watch the clock during the night.
ξ Keep your bedroom quiet, dark and cool.
ξ Take an hour to relax before you go to bed. You may want to do some muscle relaxation,
deep breathing or yoga.
ξ If you have pain, take a long-acting pain medicine at bedtime.

Most of all be patient! It will take time to get back to a more normal sleep pattern. If you use these ideas, things
should slowly get better. To learn more, check out these books:

Edinger, J. & Carney, C. (2008). Overcoming Insomnia: A Cognitive-Behavioral Therapy Approach
Workbook. Oxford: New York.
Glovinsky, P., & Spielman, A. (2006). The Insomnia Answer. Penguin: New York.

11

Tobacco

One of the best things you can do for your health is to stop using tobacco. Below are tips from the UW Center
for Tobacco Research and Intervention (CTRI) to help you quit.

Make an appointment with your healthcare provider. Your doctor can suggest medicines that may help you
while you are quitting.

Call the Wisconsin Tobacco Quit Line at 800-QUIT-NOW, (800) 784-8669), to get free quit tips and free
medicine.

Get support. Tell your friends and family that you are going to quit smoking or using tobacco. If they smoke or
use tobacco, ask them not to smoke around you or to quit with you.

Clear the decks. Get rid of things that remind you of smoking. Throw away all cigarettes, lighters and ashtrays.

Dangle the financial carrot. Put the money in a jar that you would have spent on tobacco. For a person who
smokes one pack of cigarettes per day, this can be $1,500 a year or more!

Make a plan and set a quit date. Give yourself some time to get ready to quit. Make a list of your reasons for
quitting and put this list where you will see it often. Think about why you smoke or chew, including routines that
trigger tobacco use. Brainstorm changes to routines to avoid things that make you want to light up or dip. Mark
your quit date on your calendar and get mentally prepared.

Keep busy on your quit day. Change your routine. Plan a full day of doing things you enjoy. Don’t use alcohol
because it makes it harder for you to avoid tobacco use. At the end of the day, do something (other than
smoking or chewing) to celebrate.

Replace smoking or chewing with things like gum, cinnamon sticks, suckers, toothpicks and low-calorie
snacks like carrots, celery and apple slices.

Start an exercise program. Take a walk, do aerobic exercise or play sports. This may take your mind off urges
and remind you that quitting is good for you. Your lung capacity and overall health are better when you don’t use
tobacco.

For more ideas and information, visit these websites:
ctri.wisc.edu/Smokers/smokers.htm
smokefree.gov







12

Sexual Health


Treatments for cancer (surgery, radiation, chemotherapy and hormones) can lead to changes that affect
intimacy and sexuality.

Below is a list of some physical problems that can affect your sexuality.
ξ Fatigue
ξ Nausea and vomiting
ξ Pain
ξ Numbness or changes in sensation
ξ Swelling in an arm or leg due to surgery or radiation
ξ Vaginal dryness causing painful intercourse
ξ Erectile dysfunction or impotence
ξ Ostomy issues

Your desire for intimacy may also change if you have any of these:
ξ Anger
ξ Depression
ξ Anxiety
ξ Fear
ξ Worries about money
ξ Stress of caring for young children during cancer treatment
ξ Changes in body image

Any one of these issues or problems can make it hard for you to return to the sexuality and intimacy you had
before cancer.
ξ Talk to your partner
ξ Talk about your feelings
ξ Look for other ways to be close
ξ Talk to your doctor or nurse and ask about medicines and devices that may help

You may find one or more of these books helpful.
Woman, Cancer, Sex by Anne Katz
Man, Cancer, Sex by Anne Katz
Intimacy After Cancer, a Woman’s Guide by Dr. Sally Kydd and Dana Rowett
Intimacy After Impotence by Barbara and Ralph Alterowitz
The Lovin’ Ain’t Over for Women with Cancer by Barbara Alterowitz and Ralph Elders
Fertility & Sexuality after Cancer by Leslie Schover

13

Spirituality


Spirituality is the essence of who we are as humans.

Viktor Frankl wrote, “Man is not destroyed by suffering, he is destroyed by suffering without meaning.”
Spirituality gives meaning to suffering. It may help you find hope when you are feeling despair.

Cancer can lead you to question your beliefs about life. When treatment ends, you may find that you now
have time to ask, “What is the meaning of all this? Who am I now?”

You may relate to this poem called Oceans by Juan Ramon Jimenez.
I have a feeling that my boat
has struck, down there in the depths
against a great thing...And nothing
happens! Nothing...Silence…Waves…
Nothing happens? Or has everything happened,
and we are standing now, quietly in the new life?

Below are some common questions that people often ask when they finish treatment
ξ Did I cause my cancer?
ξ Who am I now?
ξ What have I lost?
ξ What have I gained?
ξ Did I do the right thing?
ξ What do I believe?
ξ What do I want from my life?
ξ How do I want to live my life?
ξ Who is important to me now?
ξ How do I live now when I do not know what my future is?
ξ How do I understand my death?

Here are a few ideas to help you think about these questions
ξ Journal. Write down your thoughts, feelings and questions. You are writing for yourself—no one
else. There are many good resources on the internet for writing ideas.
cancer.net/patient/All+About+Cancer/Cancer.
Net+Feature+Articles/Quality+of+Life/Finding+Comfort+Through+Journaling
ξ Find a mentor. Ask yourself who are the wise people in your life who are willing to listen to you?
Who knows what it is like to have cancer? Maybe you know another cancer survivor, a clergy person, a
chaplain or a therapist who would work with you. Maybe you would like to talk with one of the Carbone
Cancer Center chaplains or cancer psychologists.
ξ Think about things to do that give you joy and make them part of your life. You have probably
changed since you were first told you had cancer. Be gentle with yourself while you explore ideas for
inner growth.

As you finish treatment and move into survivorship, you are given a chance for growth. “Any occurrence that
moves us out of taking life for granted is a gift…the question is whether we will listen or take advantage of
these periods of imbalance.” (Robert Wicks, Riding the Dragon)

14

Common Concerns





Besides changing your body, cancer may also change the way you feel and how you relate to people in your life.
There are some common feelings and changes that you may have as you finish your active cancer treatment. You
may have some or all of these:

Relief and a sense of accomplishment
After completing active treatment for cancer, people experience a wide range of emotions. Many have positive
feelings like relief that treatment is over and a sense of accomplishment or a desire to live life to the fullest.

Sadness and a sense of loss
As you begin to think and talk about the many health and life changes that come with cancer and cancer
treatment, you may become more aware of things you have lost. You may feel grief related to changes in the
appearance of your body, loss of fertility, loss of energy or other changes.

Worry, irritability and anxiety
When you think about the future, you may feel unsure and anxious. If you feel your recovery is slow, you may
feel impatient and frustrated. If you feel that others expect too much from you or are not sensitive to your needs,
you may feel irritable. You may have stressful thoughts about your treatment, death and your cancer coming
back.

Fear of cancer coming back
This is a common worry. You may feel anxious right before follow-up visits. You may have a hard time making
decisions. You may question your goals or sense of purpose.

Unexpected emotions
Many people experience emotions that they didn’t expect after cancer treatment ends. You may have been busy
in a “take action” mindset when you were going to appointments, treatments and dealing with side effects. Now
you may have more time for your feelings about having cancer and cancer treatment, so you’re becoming more
aware of them. You may feel those who have not had cancer do not understand your feelings.

Feeling you have lost a ‘safety net’
During active treatment, you had the security of coming to appointments regularly and being checked often. Now
you’re done and you don’t need to come so much. Many patients say they feel as if they have been “cast adrift”
when they no longer need to come to the clinic as often.

Changes in social support
While you are still recovering, friends and family might think that you are “done” with cancer. During your regular
clinic visits, you may have become close to some of the cancer clinic staff. When these visits end, you may feel a
sense of loss or loneliness. You may find your support needs have changed.

Changes in relationships with family, friends, coworkers
Both physical and emotional changes can lead to changes in relationships with your family, friends and others.
These changes can be positive, such as a deeper connection with a loved one.

15


Role changes
You may feel worried about being able to take on your normal roles and responsibilities at home or at work.
This can require you to make adjustments or adaptations and can cause a great deal of stress. Changes in
expectations or household roles can be stressful, since others might not understand what you have been
experiencing.

Unmet expectations about returning to “normal”
You may be surprised by how much time it takes for your body to recover. Many people feel tired and have
side effects for a long time after the cancer treatment ends. It can be hard and frustrating when you are not
able to return to your normal activities as quickly as you planned. You may also find that it is not as easy to do
some of the things you used to do.

Finding meaning
You may find yourself looking for meaning in your cancer experience as you move forward with life. Many
people tell us their priorities change and that they appreciate life more than before their cancer treatment.
They often say that they think of themselves in a new way and that they feel stronger.

Developing a “new normal”
People often think of adjusting to all of the physical, emotional and social changes that happen after cancer
treatment as finding a “new normal.” You may find that your “old normal” is no longer possible because of
these changes. Finding your “new normal” can take time.


What You Can Do For You

Taking care of yourself and talking with others can help you feel better and adjust to changes in your life after
cancer treatment. There are many ways to cope and deal with stress. You need to find the things that work for
you. This may mean that you’ll have to try a number of ideas before you find the best ones for you. Here are
some ideas that have helped other survivors:

Take care of your emotions
Be aware of your feelings and think about them. Recognize the fact that you have gone through a difficult
experience.

Express your thoughts and feelings
There are many ways to express yourself. Some examples are talking with others, writing in a journal and
creative expression with art or music.

Have good health habits
Doing some type of physical exercise most days, getting enough rest and eating a healthy diet are key to
improving your emotional health; reducing your stress and helping you regain your energy.

Give your mind and body time to heal
Recovery takes time. Be gentle with yourself. Have realistic expectations.

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Get support from others
You are not alone. Seek help from friends, loved ones and other cancer patients. If you need and want to, talk
with a psychologist, counselor, social worker, chaplain or other spiritual counselor. Many survivors find new
sources of support through talking with others who have had similar cancer experiences.

Communicate with family, friends, coworkers and your health care team
Communication is key to dealing with changes and getting support. It can prevent misunderstanding, build
friendships, solve problems and lower stress.

Find ways to relax
Make time for anything you find relaxing. Some ideas are: reading, movies, spending time outside, hobbies,
crafts, sports, music, games, meditation, breathing practices and walking.

Use mind-body approaches
You may find mind-body approaches helpful, such as mindfulness meditation, imagery, progressive muscle
relaxation, massage, yoga and tai chi.

Find comfort in a belief system that gives meaning
See the “Spirituality” section for more information.

Focus on solutions
Focus on what you can do. Planning, problem solving and goal setting can help you manage problems within
your control.

Take an active role in your health and well-being
Seek information, ask questions and take an active role in your follow-up care.

Look at the situation in different ways
Sometimes it helps to focus on the present and take a “one day at a time” approach. Other times, it helps to
remember the “big picture.” Some people find it helpful to look for meaning or positive things in their experience.

Focus on other parts of life. Take a break
You are much more than the cancer and cancer treatment you’ve had. You have more time now to focus on your
roles, activities and hobbies that you enjoy.

Find humor
Doing things that make you laugh or taking a “light-hearted” approach to problems can be helpful.

Use your life experience
Think about how you have met challenges in the past. What did you do that worked well for you? Think about
your strengths and how you have made them work for you.

For More Information
Family members and caregivers often experience similar emotional and social concerns. For ideas and
information for family members, visit these websites:
cancer.gov/cancertopics/coping/caring-for-the-caregiver
cancer.org/treatment/caregivers/copingasacaregiver

17

Seeking Help


It can be hard to know if your emotions are in the ‘normal’ range. Many side effects of cancer treatment can
also be symptoms of anxiety and depression. These include changes in appetite, sleep, energy and focus.

A professional can help with all of these. If you are concerned about any of these changes, share your
feelings with your health care provider.
ξ Sadness, grieving, depression
ξ Worry, irritability, anxiety
ξ Feeling overwhelmed
ξ Feeling alone
ξ Wanting to be alone more often than usual
ξ Changes in your ability to concentrate or remember things
ξ Personality changes
ξ Concerns about appetite, sleep, energy
ξ Recurring memories of past bad experiences
ξ Wanting to learn new ways to cope
These signs of depression need to be addressed right away by a professional:
ξ Sadness all day everyday
ξ No longer enjoying things you used to enjoy
ξ Thoughts of hurting yourself or ending your life
There are psychologists, social workers and chaplains at the UW Carbone Cancer Center who will work
with you and your doctor. Mental health providers who do not work at the UW Carbone Cancer Center may
also be important members of your health care team.

When to Check a Symptom

You should have a symptom checked by a doctor or other health care provider when it is:
ξ New and you don’t know why you have it.
ξ Old and not getting better.
ξ Old and changing. It may be getting worse, happening more often or showing up in a new place on your
body.

These symptoms should always be checked:
ξ Severe bone pain
ξ Chest pain or pressure
ξ Severe abdominal (belly) pain
ξ Trouble breathing or feeling short of breath
ξ Severe headaches
ξ Sudden changes in vision
ξ Slurred speech
ξ Weakness of a part of your body
ξ A cough that won’t go away and isn’t productive (nothing comes up)
ξ New pain or lumps in your breast
ξ New nipple discharge
ξ Changes in the skin of your breast

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Symptom
Management











After cancer treatment, some treatment-related symptoms may persist. It is common for cancer
survivors to worry that a symptom (old or new) means the cancer is coming back. Most symptoms that
survivors have are normal. Other symptoms that survivors have are often part of the recovery after
surgery, chemotherapy, radiation or other cancer treatments.

Many cancer survivors feel that life is about more than being alive, it is about being well. You need to
manage your symptoms, feel well and enjoy life.

While you may not be able to make all your symptoms go away, your cancer care team is here to help
you find the best ways to deal with them. Be sure to let your team know if you have problems that
aren’t getting better. Some symptoms can be helped with medical treatments. Others can be helped
with changes in diet, exercise, counseling or social support. Most symptoms have many causes. Talk
with your team and make a plan that meets your needs.

Fatigue
Many cancer treatments make people feel tired. Studies show that people who exercise during and
after their treatment feel less tired.

While fatigue is common, it is different for everyone. How much fatigue a person has and how long it lasts
varies.

You may want to keep a diary for one week to record the time of day when you are most tired and when you
have the most energy. What things cause you to feel tired? What things make you feel like you have a lot of
energy? Talk with your cancer care team about your fatigue and share this information with them. You may
also use the diary to help plan your daily schedule.

Think about how you feel when you are becoming tired or are tired. Some people have tired eyes, tired legs,
whole-body tiredness, stiff shoulders, less energy or weakness. Some have a hard time thinking, while others
feel sick, bored, sleepy, irritable, nervous, anxious or impatient. You can use this information to pace yourself
and manage your energy.

Make a daily schedule with rest breaks
Plan your day so you have time to rest; Take short naps (30 minutes or less), rather than one long rest. Too
much sleep during a break can lower your energy level. Rest before you become fatigued.

Get a good night’s sleep. Try to go to bed and get up at the same times each day. Sleep helps to restore your
body and energy level. Talk to your health care team if you have trouble sleeping at night.

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Be as active as you can
You may be able to increase your energy by walking, cycling, swimming or doing resistance exercise a number
of times per week. Try to exercise at the time of day when you feel best. Staying active will help you regain
your energy.

Save your energy
There are many things you can do to manage your energy.
ξ Prioritize. Think about your activities. Are there some that are more important to you than others? Try to
save your energy for those things that you care about most.
ξ Plan ahead.
- Spread your activities throughout the day. Take rest breaks between them.
- Put items that you use often in places that are easy to reach.
- Ask others to help with tasks as needed.
- Combine some activities and try to make things simpler.
- Spread your activities and appointments throughout the week. Try to do a little every day so that
you don’t do too much in one day.
ξ Pace yourself.
- Try to do things at a moderate speed. This is better than being in a rush.
- Do not overdo things or strain yourself.
- Sit for a while, and then stand for a while. Don’t do either for a long time.
- Try to avoid extremes in temperatures and activities.
ξ Position yourself with care. Practice proper body mechanics.
- When you sit, use a chair with good back support. Sit up with your back straight and your shoulders back.
- Work without bending over. Take the time to place yourself in a comfortable position, before
you do something.
- When you are bending to lift something, bend your knees and use your leg muscles to lift. Don’t use
your back to lift. Don’t bend forward at the waist with your knees straight.
- Carry many small loads or use a cart. Don’t carry one large load.

Get help and support
Ask family or friends to help with the things you find tiring or hard to do. Don’t force yourself to do more than you
can. When others ask if they can help, have a list of errands, laundry, meals or other ways they could be of help.

Think about joining a support group. Sometimes it helps people to share their feelings about their fatigue with
others who have problems with fatigue. Sometimes people learn new ways to cope from talking with each other.

Talk with your doctor if you:
ξ Feel too tired to get out of bed for a 24-hour period
ξ Feel confused
ξ Feel dizzy
ξ Lose your balance or fall
ξ Have trouble waking up
ξ Have trouble catching your breath
ξ Think your fatigue is getting worse

If you are having trouble managing your fatigue, your doctor may refer you to an occupational or physical
therapist. This person may help you find other ways of managing your fatigue such as a conditioning program.


20


Constipation
It is normal to have a bowel movement several times a day or only every two days. If stools are hard to
pass or are less frequent than every two days, you are constipated. Health problems, poor diet, lifestyle
factors and medicines can cause constipation. Opioid pain medicine like morphine and codeine can also
cause it.

Lifestyle factors that can help prevent constipation include:
ξ Drink six 8-oz glasses of fluid per day (2 Liters)
ξ Drink warm or hot liquids
ξ Drink a liquid that has caffeine
ξ Increase the fiber in your diet
ξ Drink some prune or apple juice
ξ Exercise every day or every couple of days
ξ Use a bathroom that is nice, quiet and private

Stool softeners and laxatives may be used for occasional constipation or they may be used daily for chronic
constipation. When you take a stool softener, laxative or both, be sure to drink extra fluid every day. Talk with
your team about what may work best for you. You may need to use a softener, a laxative or both.

Stool softeners and laxatives like these can help:

Stool softeners – soften stool for a more comfortable bowel movement:
ξ Docusate Sodium
ξ Colace®
Laxatives – stimulate the bowel:
ξ Senokot®
ξ Milk of Magnesia®
ξ Mineral Oil
ξ Ducolax®
ξ Bisacodyl
ξ Magnesium Citrate
ξ Miralax®

Senokot-S has both a stool softener and laxative. Some laxatives add bulk to the stool. These include
Citrucel®, Metamucil® and Fibercon®.

Anorexia
Loss of appetite can happen during or after cancer treatment. It is common for people who have had
chemotherapy or radiation treatments to have this. If you notice that you have lost your appetite, talk with
your team about meeting with a dietitian. There are recipes, helpful hints and medications that may improve
your appetite.

Sometimes people lose their appetite because of other symptoms. If you are having problems with pain,
constipation, nausea, anxiety or depression, please talk with your doctor and team. They will help you make
a treatment plan to manage your symptoms including your loss of appetite.

21


Diarrhea
Passing liquid stool, passing stool often or passing a lot of stool can happen for many reasons. Stomach and
intestinal surgery, radiation therapy or chemotherapy may cause diarrhea. If you have diarrhea, talk with your
cancer care team. You may be asked for a stool sample to make sure you do not have an infection. Your doctor
will also want to make sure you are not losing too much fluid or having other problems due to the diarrhea. For
some, looser stools or more stools may become a new normal. Diet changes and medicine are often used for
diarrhea. These are the common diet changes:

ξ Drink plenty of liquids such as broths, soups, sports drinks, water, apple juice or ginger ale. Drink
about 8-12 cups per day.
ξ Eat bananas, rice, applesauce and toast. This is often called a BRAT diet.
ξ Eat foods low in fiber such as white bread, white rice, noodles, creamed cereals, bananas, canned or
cooked skinless fruit, cottage cheese, yogurt, eggs and mashed or baked potatoes.
ξ Eat foods that have potassium in them such as bananas, oranges, potatoes and peach or apricot nectars.
ξ Don’t eat greasy, fried or spicy foods.
ξ Don’t eat dairy foods, such as milk, ice cream and cheese.
ξ Don’t eat foods that have a lot of sugar, high-fructose corn syrup or sorbitol in them.
ξ Don’t drink liquids that have caffeine in them.
ξ Don’t drink soda or alcohol.
ξ Don’t eat foods that lead to gas such as peas, broccoli, cauliflower, cabbage or legumes.

Pain
Cancer survivors with pain need a safe and useful plan. Be sure to tell your team if you are having pain.
Sometimes, the pain is due to the cancer treatment. If it is due to the treatment, it will often get better over time.
There are some pain problems that don’t go away or become chronic. These must be managed throughout a
person’s life.

The best way to manage chronic pain is to work with your team to make a plan that is just right for you. The plan
may include pain medicines, other medicines and treatments such as physical therapy and counseling.

It is important to tell your team about:
ξ How well your pain management plan and treatment is working.
ξ Any side effects.
ξ Any increase in your pain or any new pain.

Nerve pain
When pain is due to nerve damage, it is called neuropathic pain. This can happen when nerves are cut during
surgery. Some chemotherapy affects nerves in a person’s hands or feet. This can lead to burning, tingling or
numbness in the hands or feet.

Opioid pain medicines like morphine or oxycodone do not always work well for nerve pain. Other types of
medicines known as coanalgesics may be more helpful. An example of one for nerve pain is gabapentin.
Coanalgesics may take a number of weeks to control pain.

22


Muscle, bone and joint pain
Many cancer survivors have pain in their muscles, bones or joints. This type of pain is called musculoskeletal
pain. If you have not been active or become weaker because of your cancer, you are more likely to have
muscle pain. Fatigue may lead to pain because you are more likely to injure a muscle when you are tired.
Joint pain is also common for survivors. Women who take aromatase inhibitors such as Anastrozole,
Exemestane or Letrozole may have this type of pain.

Pain medicines known as nonsteroidal anti-inflammatory medicines such as ibuprofen and naproxen can be
helpful for muscle, bone and joint pain. Acetaminophen may also help. Warm baths, relaxation and gentle
massage may also help.

Swelling and pain due to lymph system damage
Lymphedema is swelling in the arms or legs because the lymph system has been damaged. This swelling
can cause pain. It happens after lymph nodes in the armpit have been removed in surgery or are harmed by
radiation to the breast and armpit. It may also happen in the legs and pelvis when lymph nodes in the groin
are removed or treated with radiation.

While it cannot be cured, lymphedema can be managed if treated early. Compression stockings and exercise
may be helpful. There are also occupational therapists that specialize in teaching people massage and
wrapping techniques to help control it.

People who have lymphedema are more likely to have infections. It is important to notice and treat
infections when they are first starting. Please tell your team about any pain, redness, swelling or injury
that you have as soon as you notice it.





















23


Cognitive Changes
Cognitive changes are changes in your thinking, such as difficulty with memory, concentration or problem-
solving. You may hear others call these changes “chemo brain.” But these problems can also occur with
other types of cancer treatment. For most people, the changes are mild and go away in a few months after
your treatment is done. Sometimes, these changes are more severe and last longer.


Here is a list of things that may affect how the brain works:
ξ The cancer itself
ξ Chemotherapy drugs
ξ Other drugs used as part of your treatment, such as steroids, anti-nausea medications or pain
medications
ξ Low blood counts
ξ Trouble sleeping
ξ Infection
ξ Feeling tired
ξ Hormone changes or hormone treatments
ξ Other illness such as diabetes or high blood pressure
ξ Nutritional deficiencies
ξ Older age
ξ Depression, anxiety
ξ Stress


Changes in thinking may include problems like these:
ξ You can’t find the right word
ξ It is hard to remember things
ξ You can’t concentrate
ξ You have trouble working with numbers the way you used to do
ξ It is hard to solve problems
ξ It isn’t easy to follow instructions
ξ You can’t multitask or do a lot of things at once
ξ It is hard to decide what to do first and to make plans


What you can do to manage your mental changes:
ξ Work less
ξ Do one thing at a time
ξ “Prepare for tomorrow today”
ξ Make list
ξ Get enough rest and sleep
ξ Use a daily or electronic calendar- keep everything in one place so it is easier to find what you need
ξ Color-code and label items
ξ Write down memory problems in a diary

24




ξ Exercise or brain: Take a class, do crossword puzzles, Sudoko and number or word games
ξ Try electronic games to exercise your mind
ξ Move your body
ξ Eat lots of fruits and vegetables
ξ Set up and follow routines. Pick one place to put items that are often lost and always put it there
ξ Ask for help if you need it

If your thinking problems cause you a lot of trouble, talk with your doctor. You may also want to talk with a
health psychologist who can work with your doctor to help you. Your doctor may also recommend an
evaluation by a neuropsychologist, who specializes in identifying specific areas of difficulty and how to cope
with them.

25

Community Resources


As members of the cancer care team, social workers help patients and families with the stress that comes with
illness. Social workers help patients, families and friends connect with community resources and solve
problems. They work with many different agencies to help with things like:

ξ Alcohol and drug treatment
ξ Applying for social security disability
ξ Government programs
ξ Mental health treatment
ξ Planning
ξ Support groups
ξ Worries about money

Please call (608) 263-8633 if you have:
ξ Breast cancer
ξ Head and neck cancer
ξ Leukemia
ξ Lymphoma
ξ Melanoma
ξ Lung Cancer
ξ Unknown primary cancer

Please call (608) 263-8521 if you have:
ξ Brain cancer
ξ Cancer of the bladder or GU (genitourinary) system
ξ Cancer of the stomach, intestines or GI (gastrointestinal) system
ξ Sarcoma
ξ Prostate cancer

Please call (608) 262-7894 if you have:
ξ Gynecologic cancer
ξ Had a bone marrow transplant













26



Below are some of the resources our social workers use to help patients and families.

Alcohol and drug programs:
Please check with your insurance carrier to learn who your in-network providers are.

• Gateway: (608) 270-2800
ξ Newstart: (608) 417-8144
ξ Methadone Clinic: (608) 242-0220
ξ Journey Mental Health: (608) 280-2700; Alcohol and Drug Intake 280-2720
ξ Narcotics Anonymous: na.org
ξ Alcoholics Anonymous: (608) 222-8989 (24-hr. helpline) and AA.org
ξ Al-Anon: al-anon.alateen.org


Financial/insurance resources:
ξ Social Security: 1(800) 772-1213 and ssa.gov
ξ Badger Care Core Plus (a medical assistance program for those who qualify): badgercareplus.org
ξ HIRSP (Health Insurance Risk Sharing Plan): hirsp.com
ξ healthcare.gov (Marketplace)


Energy assistance:
ξ 1(866) HEATWIS (432-8947) and homeenergyplus.wi.gov


Dane County Human Services: danecountyhumanservices.org
ξ Please see services and programs which include:
ξ Dane County Job Center: (608) 245-5390
ξ Department of Vocational Rehabilitation: (608) 242-4800 and dwd.wisconsin.gov/dvr
ξ Economic Support: (608) 242-7400


Center for Patient Partnerships (patient advocacy for persons with a serious illness):
ξ (608) 890-0321 and patientpartnerships.org


Cancer Survivors
ξ Gilda’s Club Madison: (608) 828-8880
ξ Komen Foundation: 1-877-GO KOMEN (1-877-465-6636)
ξ American Cancer Society TEAM: 1-800-ACS-2345

Mental Health
ξ UW Health Psychiatry and Psychology: (608) 233-3575 or 1-800-683-2300
ξ Journey Mental Health: (608) 280-2720 or (608) 280-2700, 8:00 am- 8:00 pm



27


Other Services
ξ Camp Kesem—for children with a parent who has cancer campkesem.org/uwmadison (260) 225-3736

ξ A Woman’s Touch—sexuality information for survivors (608) 250-1928

ξ Center for Patient Partnerships patientpartnerships.org (608) 890-0321

ξ UW Health Integrative Medicine (608) 262-9355

ξ Tobacco QUITLine
1-800-QUIT NOW (800-784-8669)

Program Website
Cancer Survivors Network csn.cancer.org
National Comprehensive Cancer Network nccn.org/index.asp
Cancer Care cancercare.org
American Cancer Society cancer.org
Cancer Support Community thewellnesscommunity.org
Cancer Hope Network cancerhopenetwork.org
Cancer Supportive Care Books and Handouts cancersupportivecare.com/bookorder.html
UW-Madison – Health Innovation Program hip.wisc.edu/aboutus.html
The Carcinoid Cancer Foundation, Inc. carcinoid.org/resources/index.shtml
National Cancer Institute – Office of Cancer Survivorship survivorship.cancer.gov
cancercontrol.cancer.gov/oc
s Back in the Swing – Breast Cancer Survivors backintheswing.org/Get-Back-in-the-swing
HINTS: Health Information National Trends Survey hints.cancer.gov
Yale Cancer Center – Survivorship Clinic yalecancercenter.org/surviving/challenge.
html
MD Anderson – Survivorship: Living with, Through and
Beyond Cancer
mdanderson.org/patient-and-cancer-
information/cancer-
information/cancer-
topics/survivorship/index.html MD Anderson – Cancer Survivorship mdanderson.org/patient-and-cancer-
information/cancer-information/cancer-
topics/survivorship/survivorship-
booklet.pdf
OncoLife Survivorship Care Plan oncolink.org/oncolife
A LIVESTRONG™ Survivorship Center of Excellence at
the Abramson Cancer Center of the University of
Pennsylvania
penncancer.org/cancerprograms_detail
2. cfm?id=32