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Support for People With Cancer

U.S. DEPARTMENT

OF HEALTH AND

HUMAN SERVICES

National Institutes

of Health

Coping With

Advanced Cancer
For more information . . .

This booklet is only one of many free booklets for people with

cancer. Here are some others you and your loved ones may 

find useful: 

• Chemotherapy and You

• Eating Hints for Cancer Patients

• If You Have Cancer: What You Should Know About Clinical Trials

• Pain Control: Support for People With Cancer 

• Radiation Therapy and You

• Taking Time: Support for People With Cancer

• Thinking About Complementary and Alternative Medicine: A Guide

for People With Cancer

• When Your Parent Has Cancer: A Guide for Teens

• When Someone You Love Is Being Treated for Cancer: Support

for Caregivers

• When Someone You Love Has Advanced Cancer: Support 

for Caregivers

These booklets are available from the National Cancer Institute

(NCI.) To learn more about the specific type of cancer you have

or to request any of these booklets, visit NCI's Web site

(www.cancer.gov). You can also call NCI’s Cancer Information

Service at 1-800-4-CANCER (1-800-422-6237) to speak with an

information specialist.
Coping With Advanced Cancer

“What lies behind us 

and what lies before us 

are tiny matters 

compared to what lies 

within us.” 

—Ralph Waldo Emerson

Table of Contents

1. About This Booklet .............................................................................1

2. Making Choices About Care...............................................................3

3. Talking With Your Health Care Team................................................9

4. Getting Help for Your Symptoms.....................................................13

5. Coping With Your Feelings...............................................................21

6. Advance Planning..............................................................................31

7. Talking With the Special People in Your Life .................................35

8. Looking for Meaning ........................................................................39

9. Closing Thoughts ..............................................................................43

10. Resources ...........................................................................................44

11. Words to Know...................................................................................47

12. Personal Affairs Worksheet...............................................................50
“I have good days and bad days. 

But I try to let there be more good

ones than bad, and focus on things

in my life that I can control. I just

do the best I can, enjoying family,

friends, and the little things in life.”

—Louise 
CHAPTER 1

About This Booklet

You’ve struggled with the diagnosis, treatment, and maybe the recurrence of cancer. Now

doctors may have told you that you have advanced cancer. They may have said that your

cancer is not responding to treatment and that long-term remission is no longer likely. Or

they may have said they have run out of standard treatment options. However you learn the

news, it can be devastating to you and your loved ones. Often it’s hard to believe or accept

at first.

Having advanced cancer can bring anxiety and uncertainty to your life. But some people

with advanced cancer live far longer than expected. And remember, you are still in control

of your choices and actions. Having an advanced disease can be a time of personal growth.

It can even be a time of second chances. Many people say they started to see life in a new

way after learning that their cancer had progressed despite treatment. They realized the

importance of making the most of each day.

This booklet stresses four main points:

■ Learning more about ways you can help yourself may ease some of your concerns. 

■ Your treatment may change, but as always, you deserve to ask for and receive good

medical attention from your health care team and support from your caregivers.

■ It’s important to talk about your worries, frustrations, and problems, and get support

from others. In fact, it may be one of the best things you can do for yourself.

■ As your medical care changes, you still have many choices. You can choose the way you

wish to live each day. 

“There are lots of things I still want to do, but I know that I may not be able to do

them the way I planned. But that doesn’t stop me from trying to achieve them in a

different way.” —Millie 

Reading This Booklet

No two people are alike. Some chapters of this booklet may apply to you while others may

not. Or some may be more useful later on. As you read this booklet, choose the parts that

are right for you. Share it with your family members and loved ones. They may find it

helpful to read it with you. Keep in mind that this booklet is for you, an adult with advanced

cancer, and the people close to you. For other information for a parent or loved one of a

child or young person with cancer, see the NCI booklet, Young People With Cancer. Your

friends and family members may also want to see the NCI booklet, When Someone You Love

Has Advanced Cancer.

1
2

Above all else, try to remember that you are still in charge of your life. It may be hard to do

this with all that you are going through. You may have trouble coping with your feelings

from time to time. Or you may be grieving that your life has gone a different way than you

had hoped. It’s natural to feel negative at times. You’ll have ups and downs. We hope this

booklet will help you. Our goal is to help you stay in control as much as you can, and make

the rest of your life fulfilling and satisfying. You can still have hope and joy in your life,

even as you cope with what lies ahead. 
CHAPTER 2

Making Choices About Care

People have different goals for care when dealing with advanced cancer. And your goals for

care may be changing. Perhaps you had been hoping for a remission. Yet now you need to

think more about controlling the spread or growth of the cancer. Your decisions about

treatment will be very personal. You will want to seek the help of your loved ones and

health care providers. But only you can decide what to do. Your desire to avoid future

regrets should be measured against the positives and negatives of treatment.

Questions you may want to ask: 

■ What's the best we can hope for by trying another treatment? What is the goal?

■ Is this treatment plan meant to help side effects, slow the spread of cancer, or both? 

■ Is there a chance that a new treatment will be found while we try the old one? 

■ What's the most likely result of trying this treatment? 

■ What are the possible side effects and other downsides of the treatment? How likely

are they? 

■ Are the possible rewards bigger than the possible drawbacks? 

It is important to ask your health care team what to expect in the future. It's also important

to be clear with them about how much information you want to receive from them.

Comfort Care

You have a right to comfort care both during and after treatment. This kind of care is often

called palliative care. It includes treating or preventing cancer symptoms and the side

effects caused by treatment. Comfort care can also mean getting help with emotional and

spiritual problems during and after cancer treatment. Sometimes patients don’t want to tell

the doctor about their symptoms. They only want to focus on the cancer. Yet you can

improve your quality of life with comfort care. 

People once thought of palliative care as a way to comfort those dying of cancer. Doctors

now offer this care to all cancer patients, beginning when the cancer is diagnosed. You

should receive palliative care through treatment, survival, and advanced disease. Your

oncologist may be able to help you. But a palliative care specialist may be the best person

to treat some problems. Ask your doctor or nurse if there is a specialist you can go to. 

3
“There’s a part of me that wants to

keep fighting and try a clinical trial;

the other part wants to stop

fighting. I’m just so tired of it all.

Yet I can’t help wondering if there

are other options.” —John
Your Choices

You have a number of options for your care. These depend on the type of cancer you have

and the goals you have for your care. Your health care team should tell you about any

procedures and treatments available, as well as the benefits and risks of those treatments.

Options include:

■ Clinical trials

■ Palliative radiation, chemotherapy, or surgery

■ Hospice care

■ Home care

Many patients choose more than one option. Ask all the questions you need to.

Try to base your decision on your own feelings about life and death, and the pros and cons

of cancer treatment. If you choose not to receive any more active cancer treatment, it does

not necessarily mean a quick decline and death. It also does not mean you will stop being

given palliative care. Your health care team can offer information and advice on options.

You also may want to talk about these options with family members and others who are

close to you. 

Clinical Trials 

Treatment clinical trials are research studies that try to find better ways to treat cancer.

Every day, cancer researchers learn more about treatment options from clinical trials. The

different types of clinical trials are: 

■ Phase 1 trials test how to give a drug, how often it should be given, and what dose is

safe. Usually, only a small number of patients take part.

■ Phase 2 trials discover how cancer responds to a new drug treatment. More patients

take part.

■ Phase 3 trials compare an accepted cancer treatment (standard treatment) with a

new treatment that researchers hope is better. More treatment centers and patients

take part.

If you decide to try a clinical trial, the trial you choose will depend on the type of cancer

you have. It will also depend on the treatments you have already received. Each study has

rules about who can take part. These rules may include the patient’s age, health, and type

of cancer. Clinical trials have both benefits and risks. Your doctor and the study doctors

should tell you about these before you make any decisions.

Taking part in a clinical trial could help you and help others who get cancer in the future.

But insurance and managed care plans do not always cover costs. What they cover varies by

plan and by study. Talk with your health care team to learn more about coverage for clinical

trials for your type of cancer. 

5
“I know that just because I have

stage-4 cancer doesn’t mean I’m

going to die tomorrow. My friend

has lived a long time with her

advanced cancer.” —Li
For more information about clinical trials, see NCI’s booklet, Taking Part in Clinical Trials:

What Cancer Patients Need to Know. Or talk to the NCI’s Cancer Information Service at 

1-800-422-6237 (1-800-4-CANCER).

Palliative Radiation, Chemotherapy, or Surgery

Some palliative chemotherapy and palliative

radiation may help relieve pain and other

symptoms. In this way, they may improve your

quality of life even if they don’t stop your

cancer. These treatments may be given to

remove or shrink a tumor. Or they may be

given to slow down a tumor’s spread.

Palliative surgery is sometimes used to relieve

pain or other problems.

For more information, see the NCI booklets

Chemotherapy and You and Radiation Therapy

and You.

Hospice

Hospice care is an option if you feel you are no longer benefiting from cancer treatments.

Choosing hospice care doesn’t mean that you’ve given up. It just means the treatment goals

are different at this point. It does not mean giving up hope, but rather changing what you

hope for. But be sure to check with the hospice you use to learn what treatments and

services are covered. Check with your insurance company also.

The goal of hospice is to help patients live each day to the fullest by making them

comfortable and lessen their symptoms. Hospice doctors, nurses, spiritual leaders, social

workers, and volunteers are specially trained. They are dedicated to supporting their

patients’ and families’ emotional, social, and spiritual needs as well as dealing with

patients’ medical symptoms. 

People usually qualify for hospice services when their doctor signs a statement that says that

patients with their type and stage of disease, on average, aren’t likely to survive beyond 6

months. Many people don’t realize that they can use hospice services for a number of

months, not just a few weeks. In fact, many say they wish they had gotten hospice care

much sooner than they did. They were surprised by the expert care and understanding

that they got. Often, control of symptoms not only improves quality of life but also helps

people live longer. You will be reviewed periodically to see if hospice care is still right for

you. Services may include: 

■ Doctor services (You may still keep your own doctors, too.)

■ Nursing care

■ Medical supplies and equipment

7
Hospice and Home Care

What to Expect With Hospice Care

You can get hospice services at home, in

special facilities, in hospitals, and in nursing

homes. They have specialists to help guide

care. They also have nurses on call 24 hours

a day in case you need advice. And they

have many volunteers who help families care

for their loved one. Some hospices will give

palliative chemotherapy at home as well.

Hospice care doesn’t seek to treat cancer,

but it does treat reversible problems with

brief hospital stays if needed. An example

might be pneumonia or a bladder infection.

Medicare, Medicaid, and most private

insurers cover hospice services. For those

without coverage and in financial need,

many hospices provide care for free. To

learn more about hospice care, call the

National Hospice and Palliative Care

Organization at 1-800-658-8898. Or visit 

their Web site at http://www.nhpco.org. 

The Web site can also help you find a

hospice in your community. 

Benefits of Hospice and Home Care

Hospice and home care professionals can

help you and your family work through some

tough emotional issues. A social worker can

offer emotional support, help in planning

hospice or home care, and ease the move

between types of care. Many people prefer

the comfort of their own home, familiar

surroundings, and having friends and family

members nearby. Getting health care at

home gives family members, friends, and

neighbors the chance to spend time with

you and help with your care.

■ Drugs to manage cancer-related

symptoms and pain 

■ Short-term in-patient care

■ Homemaker and home health aide

services

■ Respite (relief) services for

caregivers. This means someone

else helps with care for awhile, so

the caregiver can take a break

■ Counseling

■ Social work services

■ Spiritual care

■ Bereavement (grief) counseling

and support

■ Volunteer services

Home Care

Home care services are for people who are

at home rather than in a hospital. Home

care services may include: 

■ Monitoring care

■ Managing symptoms

■ Providing medical equipment

■ Physical and other therapies

You may have to pay for home care

services yourself. Check with your

insurance company. Medicare, Medicaid,

and private insurance will sometimes cover

home care services when ordered by your

doctor. But some rules apply. So talk to

your social worker and other members of

your health care team to find out more.

8
CHAPTER 3

Talking With Your Health Care Team

As your disease advances, it's still important to give feedback to your doctor. That's the only

way he or she can know what is working for you. Many people have a treatment team of

health providers who work together to help them. This team may include doctors, nurses,

oncology social workers, dietitians, and other specialists. They need to fully know your

desires during treatment and at the end of your life. Let them know about any discomfort

you have. You have a right to live your remaining days with dignity and peace of mind. So

it's important to have a relationship and an understanding with those who will be caring

for you.

Here are just a few topics you may want to discuss with your doctor or other members of

your health care team:

■ Pain or other symptoms. Be honest and open about how you feel. Tell your doctor

if you have pain and where. Also tell him or her what you expect in the way of pain

relief. (See Chapter 4 for more about pain and other symptoms.)

■ Communication. Some people want to know details about their care. Others prefer

to know as little as possible. Some patients want their family members to make most

of their decisions. What would you prefer? Decide what you want to know, how

much you want to know, and when you’ve heard enough. Choose what is most

comfortable for you, then tell your doctor and family members. Ask that they follow

through with your wishes. 

■ Family wishes. Some family members may have trouble dealing with cancer. They

don’t want to know how far the disease has advanced or how much time doctors

think you have. Find out from your family members how much they want to know,

and tell your health care team their wishes. Do this as soon as possible. It will help

avoid conflicts or distress

among your loved ones.

(See Chapter 7 for 

more on talking to 

your loved ones.)

Remember that only you and

those closest to you can answer

many of these questions. Having

answers to your questions can

help you know what to expect

now and in the future. 

“My doctor said, ‘The cancer is spreading to your lungs,’ and from that moment

on, I didn’t hear a word he said. He started talking about my options, but all I

saw were lips moving. I was in total shock.” —Tyrone

9
“I told the doctor when I first met

him that I needed honesty from

him; otherwise, I didn’t want to

work with him. So he promised me

he would be honest, and he was. 

He said, ‘You’ve got stage-4 lung

cancer. You have 3 months to 

2 years if everything works well.’ 

I needed to know everything.” 

—Patrice
T

11

Tips for Meeting With Your Health

Care Team

■ Make a list of your questions before each

appointment.

■ Bring a family member or trusted friend

with you to your medical visits. This person

can help you remember what the doctor or

nurse said, and talk with you about it after

the visit. 

■ Ask all your questions. If you do not

understand an answer, keep asking until you

do. There is no such thing as a “stupid”

question. 

■ Take notes. You can do this or you can ask a

family member or friend to take them for

you. Or you can ask if it’s okay to use a tape

recorder.

■ Get a phone number of someone to call

with follow-up questions.

■ Keep a file or notebook of all the papers

and test results that your doctor has given

you. Take this with you to your visits. Also

keep records or a diary of all your visits. List

the drugs and tests you have taken.

■ Keep a record of any upsetting symptoms or

side effects you have. Note when and where

they occur. Take this with you on your visits.

■ Find out what to do in an emergency. This

includes whom to call, how to reach them,

and where to go.

No One Knows the Future

It’s normal for people to want to

know how long they will have to

live. It’s also natural to want to

prepare for what lies ahead. You

may want to prepare emotionally

as well as to make certain

arrangements and plans. 

But predicting how long someone

will live is not exact. Your doctor

may be able to give you an

estimate, but keep in mind that it’s

a guess. Every patient is different.

Your doctor has to take into

account your type of cancer,

treatment, past illnesses, and 

other factors. 

Some patients live long past the

time the doctor first predicted.

Others live a shorter time. Also, an

infection or other complication

could happen and change things.

Your doctor may know your

situation best, but even he or she

cannot know the answer for sure.

And doctors don’t always feel

comfortable trying to give you 

an answer. 

In truth, none of us knows when

we are going to die. Unexpected

events happen every day. The best

we can do is try to live fully and 

for today.
“The nighttime is harder than

during the day. There’s not all that

routine going on to take my mind

off of things. Sometimes I fall

asleep, but then wake up in the

middle of the night sweaty and

shaky.” —Susan
CHAPTER 4

Getting Help for Your Symptoms

Cancer and its treatment affect people differently. Some have symptoms, while others have

no symptoms for a long time. As we said earlier, you have a right to comfort care

throughout your illness. 

Sometimes people assume their symptoms will get worse as their cancer progresses. But with

good supports in place and good care, your symptoms should always be managed. So don’t

downplay your symptoms if you’re having them. It’s important to report how you are feeling.

Tell your doctor, members of your health care team, and your loved ones. If you feel very sick

or tired, your doctor may be able to adjust your treatment or give you other medicine. 

Following are some of the symptoms you may have.

Pain

Having cancer doesn’t always mean that you’ll have pain. But if you do, you shouldn’t

accept pain as normal. Most types of pain can be treated. Your doctor can control pain with

different medicines and treatments. 

You may want to ask your doctor if you can talk to a pain specialist. Many hospitals have

doctors on staff who are experts at treating pain. They may also have palliative medicine

specialists.

Managing your pain helps you sleep and eat better. It makes it easier to enjoy your family

and friends and focus on what gives you joy. 

There are a few different ways to take pain medicine, including:

■ By mouth

■ Through the skin (like with a patch)

■ By shots

■ Through an I.V. or an S.C. pump

Your medicine, and how you take it, will depend on the type of pain and its cause. For

example, for constant pain you may need a steady dose of medicine over a long period of

time. You might use a patch placed on the skin or a slow-release pill. 

13
Controlling Pain

What to Tell Your Doctor

When describing pain to your doctor,

be as detailed as you can. Your doctor

may ask:

■ Where exactly is your pain? Does it

move from one spot to another?

■ How does the pain feel—dull,

sharp, burning?

■ How often does your pain occur?

■ How long does it last?

■ Does it start at a certain time—

morning, afternoon, night?

■ What makes the pain better? 

What makes it worse?

Using Strong Drugs To 

Control Pain

People with cancer often need strong

medicine to help control their pain.

Don’t be afraid to ask for pain

medicine or for larger doses if you

need them. The drugs will help you

stay as comfortable as you can be. 

When treating pain in people with

cancer, addiction is not an issue.

Sadly, fears of addiction sometimes

prevent people from taking medicine

for pain. The same fears also prompt

family members to encourage loved

ones to “hold off” between doses. But

people in pain get the most relief when

they take their medicines and

treatments on a regular schedule.

Medicines can be used for all types of pain,

including:

■ Mild to medium pain

■ Medium to very bad pain

■ Breakthrough pain

■ Tingling and burning pain

■ Pain caused by swelling

You should have regular talks with your health

care team about the type and extent of your pain.

That’s because pain can change throughout your

illness. Let them know the kind of pain you have,

how bad it is, and where it hurts. 

You may want to keep a “pain diary.” Write down

the information that’s noted in the box on page

21. Include the time of day that the pain occurred

and what you were doing. Rate the pain on a scale

of 0 to 10. (Zero means no pain, and 10 is the

worst pain you could have.) Use the diary when

you talk to your doctor about your pain.

Unlike other medicines, there is no “right” dose

for many pain medicines. Yours may be larger or

smaller than someone else’s. The right dose is 

the one that relieves your pain and makes you 

feel better.

Other Ways To Treat Pain

Cancer pain is usually treated with medicine and

other therapies. But there are also some non-drug

treatments. They are forms of complementary and

alternative medicine (CAM). Many people have

found the methods listed below helpful. But talk

with your health care team before trying any of

them. Make sure they are safe and won’t interfere

with your cancer treatment. 

■ Acupuncture is a form of Chinese

medicine that stimulates certain points on

the body using small needles. It may help

treat nausea and control pain. Before

using acupuncture, ask your health care

team if it is safe for your type of cancer. 

14
■ Imagery is imagining scenes, pictures, or experiences to feel calmer or perhaps to

help the body heal. 

■ Relaxation techniques include deep breathing and exercises to relax your muscles. 

■ Hypnosis is a state of relaxed and focused attention. One focuses on a certain

feeling, idea, or suggestion. 

■ Biofeedback is the use of a special machine to help the patient learn how to control

certain body functions. These are things that we are normally not aware of (such as

heart rate). 

■ Massage therapy brings relaxation and a sense of well-being by the gentle rubbing

of different body parts or muscles. Before you try this, you need to check with your

doctor. Massage is not recommended for some kinds of cancer. 

These methods may also help manage stress. Again, talk to your health care team before

using anything new, no matter how safe it may seem. Ask your health care team for more

information about where to get these treatments. To learn more, see the NCI booklet

Thinking About Complementary and Alternative Medicine: A Guide for People With Cancer.

Anxiety 

Cancer takes a toll on both your body and your mind. You are coping with many different

things now. You may feel overwhelmed. Pain and medicines for pain can also make you feel

anxious or depressed. And you may be more likely to feel this way if you have had these

feelings before. 

Here are some signs of anxiety:

■ Feeling very tense and nervous

■ Racing heartbeat 

■ Sweating a lot

■ Trouble breathing or catching your breath

■ A lump in your throat or a knot in your stomach

■ Sudden fear

Feeling anxious can be normal. But if it begins disrupting your daily life, ask for help from

the members of your health care team. They can recommend someone for you to talk to.

Counseling from a mental health professional has been shown to help many people cope

with anxiety. Your doctor can also give you medicines that will help. Some of the 

complementary and alternative medicine choices listed above for pain may work for your

anxiety as well. Art therapy and music therapy have also helped people cope.

15
Fatigue

Fatigue is more than feeling tired. Fatigue is

exhaustion—not being able to do even the small

things you used to do. A number of things can cause

fatigue. Besides cancer and its treatment, they

include anxiety, stress, and changes in your diet or

sleeping patterns. If you are having some of these

problems, you might want to:

■ Tell your health care team at your next visit. Some medicines can help with fatigue. 

■ Ask about your nutrition needs.

■ Plan your daily activities. Do only what you really must do.

■ Hand over tasks to others who are willing to help you.

■ Include short periods of rest and relaxation every day.

■ Take naps (no longer than 15-30 minutes).

■ Ask others for help, especially when you are feeling fatigued.

■ Do light exercises that are practical for you.

Nausea and Vomiting 

Nausea and vomiting may be a problem for cancer patients. Both can make you feel very

tired. They can also make it hard to get treatments or to care for yourself. If you feel sick to

your stomach or are throwing up, there are many drugs to help you. Ask your health care

team which medicines might work best for your nausea and vomiting.

You also may want to: 

■ Make small changes in your diet. Eat small amounts 5–6 times a day.

■ Avoid foods that are sweet, fatty, salty, spicy, or have strong smells. These may make

nausea and vomiting worse.

■ Drink as much liquid as possible. You’ll want to keep your body from getting dried

out (dehydrated). Water, broth, juices, clear soft drinks, ice cream, 

and watermelon are good choices.

■ Choose cool foods, which may help more than hot ones.

■ Try acupuncture.

16
Constipation

Constipation is a problem in which stool becomes hard, dry, and difficult to pass, and

bowel movements do not happen very often. Other symptoms may include painful bowel

movements, and feeling bloated, uncomfortable, and sluggish. Chemotherapy, as well as

other medicines (especially those used for pain), can cause constipation. It can also

happen when people become less active and spend more time sitting or lying down. 

Here are some ways to help manage constipation: 

■ Drink plenty of fluids each day. Many people find that drinking warm or hot fluids

helps with bowel movements.

■ Be active. You can be active by walking, doing water aerobics, or yoga. If you cannot walk,

talk with your doctor or nurse about ways you can be active, such as doing exercises in bed

or a chair.

■ Ask your doctor, nurse, or dietitian if you should eat more fiber. He or she may

suggest you eat bran, whole wheat bread and cereal, raw or cooked vegetables, fresh

and dried fruit, nuts, and popcorn and other high-fiber foods. 

■ Let your doctor or nurse know if you are in pain or discomfort from not having a

bowel movement.

He or she may suggest you use an enema or take a laxative or stool softener. Check

with your doctor or nurse before using any of these.

■ Ask your doctor about giving you laxatives when you start to take pain medications.

Taking a stool softener at the same time you start taking pain drugs may prevent 

the problem.

Loss of Appetite and Body Changes

Eating and appetite changes are common in the later stages of cancer. As your cancer

progresses, your appetite may become poor. 

On the other hand, you may be eating enough, but your body can’t absorb the nutrients.

This can cause you to lose weight, fat, and muscle. 

Nutrition goals may become less important at this time. Even if your family members think

you should have food, let your body be the judge. The goal should not be weight gain or

improving your eating but rather comfort and symptom relief.

Your nurse, dietitian, and other members of your health care team can help. They can help

you decide on changes to your diet that may be needed to keep you as healthy as possible.

There are also new drugs to improve appetite and get rid of nausea. Ask your health care

team about them. 

17
Sleep Problems

Illness, pain, drugs, being in the hospital, and stress can cause sleep problems. Sleep

problems may include:

■ Having trouble falling asleep

■ Sleeping only in short amounts of time

■ Waking up in the middle of the night

■ Having trouble getting back to sleep

To help with your sleep problem, you may want 

to try:

■ Reducing noise, dimming the lights, making the room warmer or cooler, and using

pillows to support your body

■ Dressing in soft, loose clothing

■ Going to the bathroom before bed

■ Eating a high-protein snack 2 hours before bedtime (such as peanut butter, cheese,

nuts, or some sliced chicken or turkey)

■ Avoiding caffeine (coffee, teas, colas, hot cocoa)

■ Keeping regular sleep hours (avoid naps longer than 15-30 minutes)

■ Talking with your health care team about drugs to help you sleep. These may give

relief on a short-term basis.

Confusion 

You may start noticing signs that you feel confused. This can occur in some people with

advanced stage cancer. It can also be caused by some medicines. Confusion may begin

suddenly or come and go during the day. Possible signs include:

■ Sudden changes in feelings (such as feeling calm then suddenly becoming angry)

■ Having trouble paying attention or concentrating (such as feeling easily distracted,

having trouble answering questions, or finding it harder to do tasks that involve

logic, such as math problems)

■ Memory and awareness problems (such as forgetting where you are and what day it

is or forgetting recent events)

18
If you notice these signs, talk to your health care team to try to find out the cause.

Meanwhile, try one or more of the following to help relieve confusion: 

■ Go to a quiet, well-lit room with familiar objects.

■ Reduce noise.

■ Have family or loved ones nearby.

■ Put a clock or calendar where it can be seen.

■ Limit changes in caregivers.

■ Ask your health care team about drugs that may help.

For more information on symptoms and side effects, see the NCI booklets: 

■ Eating Hints

■ Chemotherapy and You

■ Radiation Therapy and You 

■ Pain Control: Support for People With Cancer.

19
“I feel it’s important to me that 

I live each day to the fullest, 

and make peace with my relatives 

and friends and develop loving

relationships with them.” —Kate
CHAPTER 5

Coping With Your Feelings

You’ve probably felt a range of feelings during your cancer experience. You may have had

these feelings at other times in your life, too, but they may be more intense now. 

There is no right or wrong way to feel. And there is no right or wrong way to react to your

feelings. Do what is most comfortable and useful for you. 

You may relate to all of the feelings below or just a few. You may feel them at different

times, with some days being better than others. It may help to know that others have felt

the same way that you do. You may also want to read “Ways You Can Cope” on page 28.

Some of the things others have done to cope with their feelings may help you, too.

Hope

You can feel a sense of hope, despite your cancer. But what you hope for changes with time.

If you have been told that remission may not be possible, you can hope for other things.

These may include comfort, peace, acceptance, even joy. Hoping may give you a sense of

purpose. This, in itself, may help you feel better. 

To build a sense of hope, set goals to look forward to each day. Plan something to get your

mind off the cancer. Here are some tips from others with advanced stage cancer:

■ Plan your days as you’ve always done.

■ Don’t stop doing the things you like to do just because you have cancer.

■ Find small things in life to look forward to each day. 

You can also set dates and events to look forward to. Don’t limit yourself. Look for reasons

to hope, while staying aware of what’s at hand. 

Inner Strength

“My biggest struggle is that I need help, but I don’t want people to give me too

much of it. I want to do what I can for myself. If I have to work at something,

there’s a reason to live.” —Will

People with cancer find strength they didn’t know they had. You may have felt

overwhelmed when you first learned that your doctors couldn’t control your cancer. And

now you aren’t coping as well as you did in the past. But your feelings of helplessness may

change. You may find physical and emotional reserves you didn’t know you had. Calling on

your inner strength can help revive your spirit. 

21
Some people find it helpful to focus on the present instead of the past or future. They start

a new daily routine. They accept that it may have to be different from the old routine.

Others like to plan ahead and set goals. With places to go and things to do, life stretches out

before them. Others focus on the relationships they have with people close to them. Inner

strength is different for each person. So draw on the things in your life that are meaningful

to you. Look at other sections in this booklet for ways to tap into your inner strength.

Sadness and Depression

It’s normal to feel sad. You may have no energy or not want to eat. It’s okay to cry or

express your sadness in another way. You don’t have to be upbeat all the time or pretend to

be cheerful in front of others. 

Pretending to feel okay when you don’t doesn’t help you feel better. And it may even create

barriers between you and your loved ones. So don’t hold it in. Do what feels natural to you.

Depression can happen if sadness or despair seems to take over your life. Some of the signs

below are normal during a time like this. Talk to your doctor if they last for more than 

2 weeks. Some symptoms could be due to physical problems. It’s important to tell someone

on your health care team about them. 

Signs of Depression

■ Feeling helpless or hopeless, or that life has no meaning

■ Having no interest in family, friends, hobbies, or things you used to enjoy

■ Losing your appetite

■ Feeling short-tempered and grouchy

■ Not being able to get certain thoughts out of your mind

■ Crying for long periods of time or many times each day

■ Thinking about hurting or killing yourself

■ Feeling “wired,” having racing thoughts or panic attacks

■ Having sleep problems, such as not being able to sleep, having nightmares, or

sleeping too much.

Your doctor can treat depression with medicine. He or she also may suggest that you talk

about your feelings. You can do this with a psychologist or counselor. Or you may want to

join a support group. 

22
Grief 

“I heard the doctor say, ‘I’m so sorry, but . . .’ and then I heard nothing else. 

My head was spinning, and I kept saying to myself, ‘No, the doctor must be

making a mistake.’” —Rosa

We all cope with loss or the threat of loss in different ways. You may feel sadness, loneliness,

anger, fear, and guilt. Or you may find the way you think changes from time to time. For

example, you may get easily confused or feel lost. Or your thoughts may repeat themselves

over and over again. You may also find yourself low in energy. You may not want to do things

or see people. These are all normal reactions to grief.

What you grieve for is as varied as how you think and feel. You may be grieving for the loss

of your body as it used to be. You may grieve for the things you used to be able to do. You

also may grieve losing what you have left: yourself, your family, your friends, your future. 

It’s okay to take time for yourself and look inward. It’s also okay to surround yourself with

people who are close to you. Let your loved ones know if you want to talk. Let them know

if you just want to sit quietly with them. There is no right or wrong way to grieve.

Often people who go through major change and loss need extra help. You can talk with a

member of your health care team, a member of your faith community, or a mental health

professional. You don’t have to go through this alone.

Denial

“I feel like the reality of this cancer isn’t going to go away if I deny it. If I did

that, I might miss the comfort I get from sharing fears and concerns. I don’t want

to miss the sense of well-being I have knowing I have taken care of my loved ones.”

—Carrie

It’s hard to accept the news that your cancer has spread or can no longer be controlled.

And it’s natural to need some time to adjust. But this can become a serious problem if it

lasts longer than a few weeks. It can keep you from getting the care you need or talking

about your treatment choices. As time passes, try to keep an open mind. Listen to what

others around you suggest for your care.

23
Anger

The feeling of “No, not me!” often changes to “Why me?” or

“What’s next?” You have a lot to deal with right now. It’s normal and

healthy to feel angry. You don’t have to pretend that everything is

okay. You may be mad at your doctor, family members, neighbors,

and even yourself. Some people get angry with God and question

their faith.

At first, anger can help by moving you to take action. You may decide

to learn more about different treatment options. Or you may become more involved in the

care you are getting. But anger doesn’t help if you hold it in too long or take it out on others.

Often the people closest to us are the ones who have to deal with our anger, whether we want

that or not. 

It may help to figure out why you are angry. This isn’t always easy. Sometimes anger comes

from feelings that are hard to show, such as fear, panic, worry, or helplessness. But being

open and dealing with your anger may help you let go of it. Anger is also a form of energy.

It may help to express this energy through exercise or physical activity, art, or even just

hitting the bed with a pillow. 

Stress

“Just because I love God and know where I’m going, doesn’t mean I’m not stressed.

I worry all the time about what’s to come. I try to focus on the things I can control,

but it’s not always easy.” —David

Everyone has stress, but most likely you’re having a lot more now. After all, you’re dealing

with many changes. Sometimes, you may not even notice that you’re stressed. But your

family and friends may see a change. 

Anything that helps you feel calm or relaxed may help you. Try to think of things that you

enjoy. Some people say it helps to: 

■ Exercise or take a walk.

■ Write thoughts and feelings in a journal.

■ Meditate, pray, or do relaxation exercises.

■ Talk with someone about your stress.

24
■ Do yoga or gentle stretching.

■ Listen to soothing music.

■ Express yourself through art.

Fear and Worry 

“I have people around all day, but there’s nothing worse than waking up alone and

upset at 3:00 in the morning in a quiet, dark room. You have to have someone you

can call right then.” —Jamal

Facing the unknown is very hard. At times, you may feel scared of losing control of your life.

You may be afraid of becoming dependent on other people. You may be afraid of dying. 

If you struggle with these fears, remember that many others have felt the same way. Some

people worry about what will happen to their loved ones in the future. Others worry about

money. Many people fear being in pain or feeling sick. All these fears are normal. 

Sometimes patients or family members worry that talking about their fears will make the

cancer worse. This is not true. Thinking about getting sicker or dying is not going to make

your health worse. But it’s good to be hopeful and positive. It’s better for your health to

express your feelings, rather than hold them in. 

Some people say it helps if you:

■ Know what to expect. Learn more about your illness and treatment options by

asking questions of your healthcare team.

■ Update your affairs. If you have not already done so, make sure your will and 

other legal paperwork are in order. Then you won’t have to worry about it. 

(See Chapter 6.)

■ Try to work through your feelings. If you can, talk with someone you trust.

If you feel overwhelmed by fear, remember that others have felt this way, too. It’s okay to

ask for help.

25
Guilt and Regret

It’s normal for people with cancer to wonder if they did anything to add to their situation.

They may blame themselves for lifestyle choices. They may feel guilty because treatment

didn’t work. They may regret ignoring a symptom and waiting too long to go to the doctor.

Others worry that they didn’t follow the doctor’s orders in the right way. 

It’s important to remember that the treatment failed you. You didn’t fail the treatment. We

can’t know why cancer happens to some people and not others. In any case, feeling guilty

won’t help—it can even stop you from taking action and getting the treatment you need.

So, it’s important for you to: 

■ Try to let go of any mistakes you think you may have made.

■ Focus on things worthy of your time and energy.

■ Forgive yourself.

“I couldn’t stop thinking about what I could have done to slow down my cancer.

Maybe I should have gone to the doctor sooner, maybe I should have given up

sweets, maybe I should have done this, maybe I should have done that. After

talking about it with my social worker, she helped me see that this is no one’s fault,

especially mine.” —Erika

You may want to share these feelings with your loved ones. Some people blame themselves

for upsetting the people they love. Others worry that they’ll be a burden on their families.

If you feel this way too, take comfort in this: many family members have said it is an honor

and a privilege to care for their loved one. Many consider it a time when they can share

experiences and become closer to one another. Others say that caring for someone else

makes them take life more seriously and causes them to rethink their priorities. 

Maybe you feel that you can’t talk openly about these things with your loved ones. If so,

counseling or a support group may be an option for you. Let your health care team know if

you would like to talk with someone. 

26
T

Finding Humor

Laughter can help you relax. Even

a smile can fight off stressful

thoughts. Of course, you may not

always feel like laughing, but

other people have found these

ideas can help:

■ Enjoy funny things children

and pets do.

■ Watch funny movies or TV

shows.

■ Read a joke book or look at

jokes on the Internet. If you

don’t own a computer, use one

at your local library. Or ask a

friend to print some for you.

■ Listen to comedy tapes.

■ Read the comics in the

newspaper or the cartoons 

and quotes in magazines.

■ Look in the humor section in

the library or book store.

Loneliness 

“I know my friends try to understand. It

doesn’t matter what I say though—they

just don’t get it. I can’t even begin to

explain to them how I feel or what’s

going on. I’m not saying it’s their fault

or anything. It’s just hard.” —Jennifer

You may feel alone, even if you have lots of

people around you who care. You may feel

that no one really understands what you’re

going through. And as the cancer progresses,

you may see family, friends, or coworkers less

often. You may find yourself alone more than

you would like. Some people may even

distance themselves from you because they

have a hard time coping with your cancer.

This can make you feel really alone.

Although some days may be harder than

others, remember that you aren’t alone. Keep

doing the things you’ve always done the best

you can. If you want to, tell people that you

don’t want to be alone. Let them know that

you welcome their visits. 

More than likely, your loved ones are feeling

many of the same things you are. They, too,

may feel cut off from you if they can’t talk

with you. You may also want to try joining a

support group. There you can talk with others

who share your feelings.

27
About Support Groups

You may have heard about

support groups in your area

for people with cancer. They

can meet in person, by phone,

or over the Internet. They may

help you gain new insights

into what’s happening, get

ideas about how to cope, and

help you know that you’re 

not alone. 

In a support group, people may

talk about their feelings and

what they have gone through.

They may trade advice and try

to help others who are dealing

with the same kinds of issues.

Some people like to go and

just listen. Others prefer not to

join support groups at all.

Some people aren’t

comfortable with this kind 

of sharing.

If you feel like you would

enjoy outside support such as

this, but can’t get to a group in

your area, try a support group

on the Internet. Some people

with cancer say that Web

sites with support groups have

helped them a lot. 

Getting Support

Your feelings will come and go, just as they always have in

your life. It helps to have some strategies to deal with them. 

First, know that you aren’t alone. Many people have been

in your situation. Some choose to confide in friends and

family members. Others do better when they join a

support group. It helps them to talk with others who are

facing the same challenges. You may prefer to join an

online support group, so you can chat with people from

your home.

If support groups don’t appeal to you, there are many

experts who are trained to work in cancer care. These

include oncology social workers, health psychologists,

or counselors. 

Many people also find faith as their source of support.

They may seek comfort from the different members of

their faith community. Or they may find that talking to a

leader in their religious or spiritual community can be

helpful. If you need help finding faith-based support,

many hospitals have a staff chaplain who can give support

to people of all faiths and religions. Your health care team

may also be able to tell you about faith-based

organizations in the area.

Ways You Can Cope 

You may be able to keep doing many of your regular

activities, even though some may be harder to do. Just

remember to save your strength for the things you really

want to do. Don’t plan too many events for one day. Also,

try to stagger things throughout the day.

On the next page you’ll find some ideas that other

patients say have helped them cope. As you can see, even

little things can help.

28
29

Ways You

Can Cope

Build model airplanes.

Pray or meditate.

Window shop.

People watch at the mall.

Go to a movie.

Play board games or

cards.

Attend local concerts

and plays.

Start a new daily

routine. Accept that it

may have to be

different from your old

one, but change is

okay!

Talk about feelings

with friends, family,

or a leader in your

spiritual or faith

community. 

Do yoga or gentle

stretching.

I am taking a watercolor class. 

I’m awful at it, but I sure don’t 

care – anything that gets my mind

off things.

I like to get my nails done.

I started to follow the stock market.

My nieces call and leave messages

or songs on my answering machine.

I listen to them when I need a fast

way of cheering up.

Sometimes I drive out to the airport

and watch planes. For some reason,

it’s very soothing to me.

I built a birdhouse with my

grandson. We had fun, and 

I loved teaching him about tools.

I like to bird watch. I sit on my

porch with a pair of binoculars.

I watch a lot of movies.

I like to fix things around the house.

I took up photography. I didn’t 

buy a fancy camera or anything. 

I just started taking pictures.

Go fishing.

Do the things I enjoy

like making phone calls

or reading.

Spend time with people 

I love.

Listen to music or a

relaxation tape.

Do woodcarving.

Read mystery novels.

Spend time outdoors in a

community garden or park.

Volunteer or find a way

to help others in need.

Plant flower pots.

Go to worship services.

Knit, crochet, or

needlepoint.

Do crossword puzzles.

Do relaxation exercises.
“Don’t feel like you’re being morbid

because you’re taking care of

business in advance. My goal is to

try not to leave things undone

because it’s not going to be any

easier on anybody else.” —Ronald
CHAPTER 6

Advance Planning

This section outlines some things you can do to ensure your wishes are understood. This

can help relieve the burden on your loved ones later.

Advance Directives 

It’s important to start talking about your wishes with the people who matter most to you.

There may come a time when you can’t tell your health care team what you need. Some

people prefer to let their doctor or their family members make decisions for them. But

often people with cancer feel better once they have made their desires known.

Advance directives are legal papers that tell your loved ones and doctors what to do if you

can’t tell them yourself. The papers let you decide ahead of time how you want to be

treated. They may include a living will and a durable power of attorney for health care.

Think about giving someone you trust the right to make medical decisions for you. This is

one of the most important things you can do. 

A living will lets people know what kind of medical care you want if you are terminally ill

(dying). It states in writing your wishes about being kept alive by artificial means or

extreme measures (such as a breathing machine or feeding tube). Some states allow you to

give other instructions as well. 

A durable power of attorney for health care names a person to make medical decisions for

you when you can’t make them yourself. (In some places, you can appoint this person to

make decisions when you no longer want to.) This person is called a health care proxy.

Choose a person you can trust to carry out your decisions and follow your preferences. Be

sure to discuss this in-depth with the person you choose. They need to know they could be

called upon. They should understand your wishes and any religious concerns you have. 

Setting up an advance directive is not the same as giving up. Making decisions now keeps

you in control. You are making your wishes known for all to follow. This can help you worry

less about the future and live each day to the fullest. 

It’s hard to talk about these issues. But it often comforts family members to know what 

you want. And it saves them having to bring up the subject themselves. You may also gain

peace of mind. You are making hard choices for yourself instead of leaving them to your

loved ones. 

Make copies of your advance directives. Give them to your family members, your health

care team, and your hospital medical records department. This will ensure that everyone

knows your decisions.

31
Following State Laws

You do not always need a

lawyer present to fill out these

documents. But you may need

a notary public. Each state has

its own laws concerning living

wills and durable powers of

attorney. These laws can vary

in important details. In some

states, a living will or durable

power of attorney signed in

another state isn’t legal. Talk

with your lawyer or social

worker to get more details. 

Or look at your state’s

government Web site. (See

the Resources section at the

end of the booklet for more 

on how to get copies of

advance directives.)

Other Legal Papers

Here are some other legal

papers that are not part of the

advance directives:

■ A will divides your

property among your

heirs.

■ A trust is when a

person you appoint

oversees, invests, or

pays out money to those named in the trust.

■ Legal power of attorney—you appoint a person

to make financial decisions for you when you

can’t make them yourself.

Planning for Your Family

Careful planning reduces the financial, legal, and

emotional burden your family and friends will face after

you’re gone. For many people, it’s hard bringing up

these subjects. But talking about them now can avoid

problems later. 

Maybe you don’t feel comfortable bringing up the

subject with loved ones. Or maybe your family simply

doesn’t talk about these things. In either case, seek help

from a member of your health care team. They may be

able to help your family understand.

■ Clearing up insurance issues. Contact your

health insurance company if you decide to try a

new treatment or go into hospice. Most

insurance plans cover hospice. They also cover

brief home visits from a nurse or a home health

aide several times a week. But it’s wise to ask 

in advance. This may prevent payment 

problems later.

32
T

A Checklist for

Organizing Your Affairs

✔ If you can’t physically gather

important papers, make a

list of where your family can

find them.

✔ Keep your papers in a

fireproof box or with 

your lawyer.

✔ If you keep your important

papers in a safety deposit

box, make sure that a family

member or friend has

access to the box.

✔ Although original documents

are needed for legal

purposes, give family

members photocopies.

A worksheet of important

papers and documents is on

page 50. You can use it as a

guide to the types of papers

your family will need. 

■ Putting your affairs in order. You can help your

family by organizing records, insurance policies,

documents, and instructions. You may want to call

your bank to make sure you have taken all the

right steps in doing these things. On the next

page is a checklist to share with the person who

will help you manage your affairs. (Also see the

Personal Affairs Worksheet on page 50.)

■ Making funeral arrangements. You may want to

help your family plan a funeral or memorial

service that has your personal touch. Some

people plan services that are celebrations. Talk

with your family about how you want others to

remember you. 

33
“I went to the Grand Canyon with

my brother. I started crying and

couldn’t stop. I realized he started

crying, too, because he couldn’t

handle the fact that he may not have

me around any more. So there we

were, just crying in the car. He was

like, ‘I don’t want to lose you. 

I don’t want you to die.’” —Rhonda
CHAPTER 7

Talking With the Special People in Your Life

Your loved ones may need time to adjust to the new stage of your illness. They need to come

to terms with their own feelings. These may include confusion, shock, helplessness, or anger.

Let them know that they can offer comfort just by being themselves and by being at ease with

you. Ask them to listen when you need it, rather than try to solve every problem. 

Knowing that people cope with bad news in their own way will help you and your loved

ones deal with their emotions. Many people are reassured and comforted by sharing

feelings and taking the time to say what they need to. 

Bear in mind that not everyone can handle the thought that they might lose you. Or some

people may not know what to say or do for you. As a result, relationships may change. This

isn’t because of you, but because others have trouble coping with their own painful feelings.

If you can, remind them that you are still the same person you always were. Let them know if

it’s all right to ask questions or tell you how they feel. Sometimes just reminding them to be

there for you is enough. But it’s also okay if you don’t feel comfortable talking about it either.

Sometimes certain topics are hard to talk about with others. If this is the case, you may want

to talk by yourself with a member of your medical team or a trained counselor. You also may

want to attend a support group where people meet to share common concerns. 

Some families have trouble expressing their needs to each other. Other families simply do

not get along with each other. 

If you don’t feel comfortable talking with family members, ask a member of your health care

team to help. You could also ask a social worker or other professional to hold a family

meeting. This may help family members feel safer to express their feelings openly. It can also

be a time for you and your family to meet with your team to problem-solve and set goals. 

It can be very hard to talk about these things. But studies show that cancer care goes more

smoothly when everyone stays open and talks about the issues. 

Often, talking with the people closest to you is harder than talking with anyone else. Here’s

some advice on talking with loved ones during tough times.

Spouses and Partners

Some relationships grow stronger during cancer treatment, but others are weakened. It’s

very common for patients and their partners to feel more stress than usual as a couple.

There is often stress about: 

■ Knowing how to give and get support

■ Coping with new feelings that have come up

■ Figuring out how to communicate

■ Having money problems

35
■ Making decisions

■ Changing roles 

■ Having changes in social life

■ Coping with changes in daily routines

Some people feel more comfortable talking about serious issues than others. Only you and

your loved one know how you communicate. Some things to think about are:

■ Talk things over. This may be hard for you or your partner. If so, ask a counselor or

social worker to talk to both of you together. 

■ Be realistic about demands. Your spouse or partner may feel guilty about your

illness. They may feel guilty about any time spent away from you. They also may be

under stress due to changing family roles.

■ Spend some time apart. Your partner needs time to address his or her own needs. If

these needs are neglected, your loved one may have less energy and support to give.

Remember, you didn’t spend 24 hours a day together before you got sick.

■ Know that it’s normal for body changes and emotional concerns to affect your sex

life. Talking openly and honestly is key. But if you can’t talk about these issues, you

might want to talk with a professional. Don’t be afraid to seek help or advice 

if you need it. 

“My wife has been my biggest source of strength, plain and simple. That’s how 

I cope with all of it, because we talk and sometimes we literally are talking until 

4 or 5 in the morning. We are just sitting here and just talking and reminiscing,

and asking questions and answering them. Being there for one another.” —Steve

Small Children 

“We can’t always protect the people we love. But we can prepare them.” 

—Unknown 

Keeping your children’s and grandchildren’s trust is

still very important at this time. Children can sense

when things are wrong. It’s best to be as open as you

can about your cancer. They may worry that they did

something to cause the cancer. They may be afraid

that no one will take care of them. They may also feel

that you are not spending as much time with them as

you used to. Although you can’t protect them from

what they may feel, you can prepare them.

36
Some children become very clingy. Others get into trouble in school or at home. Let the

teacher or guidance counselor know what is going on. And with your kids, it helps to keep

the lines of communication open. Try to:

■ Be honest. Tell them you are sick and that the doctors are working to help you feel

comfortable.

■ Let them know that nothing they did or said caused the cancer. And make sure they

know that they can’t catch it from others.

■ Tell them you love them.

■ Tell them it’s okay to be upset, angry, or scared. Encourage them to talk.

■ Be clear and simple, since children do not have the focus of adults. Use words they

can understand.

■ Let them know that they will be taken care of and loved.

■ Let them know that it’s okay to ask questions. Tell them you will answer them as

honestly as you can. In fact, children who aren’t told the truth about an illness can

become even more scared. They often use their imagination and fears to explain

the changes around them.

Teenagers

“My father and I are so much closer. It’s a totally different family than we were

before I was diagnosed. We’ve learned how to talk about how we feel, how to talk

to each other about what’s going on and what we’re afraid of.” —Jake

Many of the things listed above also apply to teenagers. They need to hear the truth about

an illness. This helps keep them from feeling guilt and stress. But be aware that they may

try to avoid the subject. They may become angry, act out, or get into trouble as a way of

coping. Others simply withdraw. Try to: 

■ Give teenagers the space they need. This is especially important if you rely on them

more than before to help with family needs.

■ Give them time to deal with their feelings, alone or

with friends. 

■ Let your teenager know that they should still go to

school and take part in sports and other fun activities.

If you have trouble explaining your illness, you might want to

ask for help. Try asking a close friend, relative, or health care

provider for advice. You could also go to a trusted coach,

teacher, or youth minister. Your social worker or doctor can

help you find a good counselor. 

37
Adult Children

Your relationship with your adult children may change now

that you have advanced cancer. You may have to rely on them

more for different needs. It may be hard for you to ask for

support. After all, you may be used to giving support rather

than getting it. Or it may be hard for other reasons; perhaps

your relationship with them has been distant.

Adult children have their concerns, too. They may become

fearful of their own mortality. They may feel guilty because they

feel that they can’t meet the many demands on their lives as parents, children, and

employees. 

As your illness progresses, it helps to:

■ Share decision-making with your children. 

■ Involve them in issues that are important to you. These may include treatment

choices, plans for the future, or types of activities you want to continue.

Reaching out to your children and openly sharing your feelings, goals, and wishes may help

them cope with your disease. It may also help lessen fears and conflict between siblings

when other important decisions need to be made.

“It’s a roller coaster ride, so we just ride the roller coaster. I’ve got the whole family

prepared, and that’s what you have to do when you have cancer. Things 

are going well and then really bad.” —Delia

38
CHAPTER 8

Looking for Meaning

Many people who have advanced cancer look more deeply for meaning in their lives. They

want to understand their purpose and their legacy. They want to examine the things they

have gone through in life. Some look for a sense of peace or a bond with others. Some

seek to forgive themselves or others for past actions. Some look for answers and strength

through religion or spirituality. 

Being spiritual can mean different things to different people. It can be a very personal

issue. Everyone has their own beliefs about the meaning of life. Some people find it

through religion or faith. Some people find it by teaching, or through volunteer work.

Others find it in different ways. Having cancer may cause you to think about what you

believe. You may think about God, an afterlife, about the connections made between living

things. This can bring a sense of peace, a lot of questions, or both.

Like some people, you may also find that cancer changes your values. Having the disease

may help you learn what is most important to you. The things you own and your daily

duties may seem less important. You may decide to spend more time with loved ones or

helping others. You may want to do more things in the outdoors, or learn something new.

You may have already given a lot of thought to these issues. Still, you might find comfort by

exploring more deeply what is meaningful to you. You could do this with someone close to

you, a member of your faith community, or a mental health professional. 

Or you may just want to take time for yourself. You may want to reflect on your experiences

and relationships. Writing in a journal or reading also helps some people find comfort and

meaning. Many people find that prayer, meditation, or talking with others has helped them

cope and explore their lives.

Celebrating Your Life

Having advanced cancer often gives people a chance to look back on life and all they have

done. They like to look at the different roles they have played throughout life. They think

about what something meant at the time, and what it means now. Some gather things that

have meaning to them to give to their loved ones. Others share memories or projects with

loved ones. 

39
“I’ve learned a lot about myself and

the strength I have in dealing with

this. I’ve learned a lot about my

kids and family too, watching them

handle this, and it makes me proud

to be their mother. I figure I must

have done something right.” 

—Madeline
Doing these things is often called “making a legacy” for yourself. It can be whatever you

want. Don’t limit yourself! And you can do these things alone or with others close to you.

Some examples of ways people have celebrated their lives are:

■ Making a video of special memories

■ Reviewing or arranging family photo albums 

■ Charting or writing down your family’s history or family tree

■ Keeping a daily journal of your feelings and experiences

■ Making a scrapbook

■ Writing notes or letters to loved ones and children

■ Reading or writing poetry 

■ Creating artwork, knitting, or making jewelry

■ Giving meaningful objects or mementos to loved ones

■ Writing down or recording funny or special stories from your past

■ Planting a garden

■ Making a tape or CD of favorite songs

■ Gathering favorite recipes into a cookbook

You can do whatever you want that brings joy and meaning to you. Some people with cancer

also make what is called an “ethical will.” It’s not a legal paper. It’s something you write

yourself to share with your loved ones. Many ethical wills contain the person’s thoughts on

his or her values, memories, and hopes. They may also talk about the lessons learned in life

or other things that are meaningful. It can say anything you want, in any way you want.

“For the meaning of life differs from man to man, from day to day and from hour

to hour. What matters, therefore, is not the meaning of life in general but rather

the specific meaning of a person’s life at a given moment.” —Viktor Frankl

41
“Our family has become very close

since I got cancer. I remember 

my son said to me, ‘Dad, it’s all 

because of the way you reacted to it.’ 

I believe him, too. I wasn’t bitter.

He wrote a poem for me that said,

‘You’re embracing your death

instead of running away from it.’

And that was beautiful to me.” 

—Bill
CHAPTER 10

Closing Thoughts

Living with advanced stage cancer may bring many challenges and hardships. But it can

also be a time of fulfillment and joy. 

As you think about the issues raised in this booklet, keep in mind that survival statistics are

just numbers. The numbers that really mean the most for any of us are quite different.

They measure the good days, the comfortable nights, and the hours of happiness and joy.

Keep living your life the best that you can and in the fullest way possible.

“Think only of today, and when tomorrow comes, it will be today, and we will

think about it.” —St. Francis de Sales

43
Resources*

Federal Resources

National Cancer Institute 

Provides current information on cancer

prevention, screening, diagnosis, treatment,

genetics, and supportive care. Lists clinical trials

and specific cancer topics in NCI’s Physician

Data Query (PDQ®) database.

Visit: www.cancer.gov 

Cancer Information Service 

Answers questions about cancer, clinical trials, and cancer-related services and helps

users find information on the NCI Web site. Provides NCI printed materials.

Toll-free: 1-800-4-CANCER (1-800-422-6237)

TTY: 1-800-332-8615

Visit: www.cancer.gov/cis

Chat online: Click on “LiveHelp.”

Administration on Aging 

Provides information, assistance, individual counseling, organization of support groups,

caregiver training, respite care, and supplemental services.

Phone: 1-202-619-0724

Visit: www.aoa.gov 

Centers for Medicare and Medicaid Services 

Provides information for consumers about patient rights, prescription drugs, and health

insurance issues, including Medicare and Medicaid.

Toll-free: 1-800-MEDICARE (1-800-633-4227)

Visit: www.medicare.gov (for Medicare information)

or www.cms.hhs.gov (other information)

Equal Employment Opportunity Commission 

Provides fact sheets about job discrimination, protections under the Americans With

Disabilities Act, and employer responsibilities. Coordinates investigations of employment

discrimination.

Toll-free: 1-800-669-4000

TTY: 1-800-669-6820

Visit: www.eeoc.gov

44

For more resources

Go to the NCI web site at www.cancer.gov. 

In the search box, type in the words 

“national organizations.” Or call 

1-800-4-CANCER (1-800-422-6237) 

to seek more help.
U.S. Department of Labor 

Office of Disability Employment Policy 

Provides fact sheets on a variety of disability issues, including discrimination, workplace

accommodation, and legal rights.

Toll-free: 1-866-633-7365

TTY: 1-877-889-5627

Visit: www.dol.gov/odep 

Private/NonProfit Organizations

Aging With Dignity 

Provides information and materials regarding advance directives. You can order the

document Five Wishes, which states your end of life decisions for your health care team,

and friends and family members.

Toll-free: 1-888-5WISHES (1-888-594-7437) 

Visit: www.agingwithdignity.org 

American Cancer Society

National Cancer Information Center

Available to answer questions 24 hours a day, 7 days a week.

Toll-free: 1-800-ACS-2345 (1-800-227-2345)

Visit: www.cancer.org

CancerCare 

Offers free support, information, financial assistance, and practical help to people with

cancer and their loved ones.

Toll-free: 1-800-813-HOPE (1-800-813-4673)

Visit: www.cancercare.org

Hospice Foundation of America 

Provides programs and materials on hospice care, caregiving, grief, and end of life. They

also provide a hospice locator service, and links to other organizations and resources.

Toll-free: 1-800-854-3402 

Visit: www.hospicefoundation.org 

Kids Konnected 

Offers education and support for children who have a parent with cancer or who have lost

a parent to cancer. 

Toll-free: 1-800-899-2866 

Visit: www.kidskonnected.org 

National Coalition for Cancer Survivorship 

Provides information on cancer support, employment, financial and legal issues, advocacy,

and related issues.

Toll-free: 1-877-NCCS YES (1-877-622-7937)

Visit: www.canceradvocacy.org

45
National Hospice and Palliative Care Organization 

Provides information on hospice care, local hospice programs, state specific advance

directives, and locating a local health care provider. Through their program, Caring

Connections, they also provide education and materials on palliative and end of life issues,

as well as links to other organizations and resources.

Toll-free: 1-800-658-8898 

Visit: www.nhpco.org 

Caring Connections 

Toll-free: 1-800-658-8898

Visit: www.caringinfo.org

NeedyMeds—Indigent Patient Programs

Lists medicine assistance programs available from drug companies. NOTE: Usually patients

cannot apply directly to these programs. Ask your doctor, nurse, or social worker to contact them.

Visit: www.needymeds.com

Patient Advocate Foundation 

Offers education, legal counseling, and referrals concerning managed care, insurance,

financial issues, job discrimination, and debt crisis matters.

Toll-free: 1-800-532-5274

Visit: www.patientadvocate.org

The Wellness Community

Provides free psychological and emotional support to cancer patients and their families.

Toll-free: 1-888-793-WELL (1-888-793-9355) 

Visit: www.thewellnesscommunity.org

46
Words to Know

Acupuncture (AK-yoo-PUNK-cher): A form of Chinese medicine that stimulates certain points

on the body. The goal is to promote health. It is also used to lessen disease symptoms and

treatment side effects. For people with cancer, it may help treat nausea and control pain.

Before using acupuncture, ask your health care team if it is safe for your type of cancer. 

Advance directives: Legal papers that allow you to decide ahead of time how you want to

be treated when you are dying. The two main types are living wills and durable power of

attorney.

Advanced cancer: Cancer that doctors no longer believe they can control with treatment;

also called “advanced stage cancer” or “late-stage cancer.” 

Biofeedback: A way to monitor certain body functions to gain some control over them.

Examples of such body functions are heart rate and blood pressure.

Breakthrough pain: Pain that “breaks through” pain medication or is very painful for a

short time. Breakthrough pain can occur several times a day. This can happen even when a

patient is taking the right dose of pain control medicine.

Complementary and alternative medicine (CAM): Treatment used along with, or instead of,

standard health care. CAM includes methods such as acupuncture and massage. Some

CAM treatments may help relieve cancer symptoms or side effects. But not all CAM

treatments are safe. They should not take the place of standard health care.

Clinical trials: A type of research study that uses volunteers to test new methods of

screening, prevention, diagnosis, or treatment of a disease. Also called a clinical study.

Diagnosis (dye-ug-NOH-sis): The name and details of your disease or health condition. In

recurrent cancer, this includes your type, location, and stage of cancer.

Dietitian (dy-uh-TIH-sun): A person with special training in nutrition, who can help you

with choices in your diet. They also can suggest ways to make eating easier.

Durable power of attorney for health care: This type of advance directive appoints a person

(healthcare proxy). The healthcare proxy makes health care decisions for you when you

can’t make them yourself.

Ethical (EH-thuh-kul) will: A paper that contains thoughts or wishes that you want to share

with your loved ones. An ethical will is not a legal document.

Health psychologist: A mental health professional who works with people and families

affected by illness.

Health care proxy: The person you have named in an advance directive to make medical

decisions for you. This person can make choices for your care when you can’t make them

yourself.

Hospice (HA-spis) care: Care given to help patients live each day to the fullest and die with

dignity. The goal of hospice care is not to treat the disease but to make the patient

comfortable and symptom free. 

47
Hypnosis: A state of relaxed and focused attention. The patient focuses on a certain

feeling, idea, or suggestion to aid in healing. For cancer pain relief, hypnosis works best

when it is added to your medical treatments. 

Imagery: A method in which the person focuses on positive images in his or her mind. It

may help the body heal or make you feel calmer.

I.V.—intravenous (in-truh-VEE-nus): It means to get medicine or nutrients into the body

through a vein.

Legal power of attorney: You appoint a person to make financial decisions for you when

you can’t make them yourself.

Living will: A type of advance directive. A living will is a legal paper that lets people know

what kind of medical care you want if you are close to death.

Massage therapy: Rubbing different body parts to help you relax and gain a sense of wellbeing. 

Notary public: A person with authority from the court to witness legal papers and

signatures.

Oncologist (ahn-KAH-luh-jist): A doctor who specializes in cancer study and treatment.

Oncology social worker: A social worker who specializes in helping cancer patients and

their families.

Palliative care (PAL-ee-yuh-tiv): Care given to improve the quality of life of patients with a

serious or life-threatening disease. The goal of palliative care is to prevent or treat as early

as possible:

• The symptoms of the disease 

• Side effects caused by treatment 

• Psychological, social, and spiritual problems related to the disease or its treatment

Also called comfort care, supportive care, and symptom management. 

Palliative chemotherapy (PAL-ee-yuh-tiv kee-moh-THAIR-uh-pee): Not meant to be

curative, this is chemotherapy that may help to relieve the symptoms of advanced stage

cancer.

Palliative radiation (PAL-ee-yuh-tiv ray-dee-AY-shun): Not meant to be curative, this is radiation

therapy that may help to relieve the symptoms of advanced stage cancer.

Palliative surgery: Surgery used to relieve the symptoms of advanced stage cancer.

Recurrence (ree-KUR-ents): Cancer that has come back after a period of time during

which it could not be found. The cancer may come back to the same place as the original

(primary) tumor or to another place in the body. Also called recurrent cancer.

Relaxation techniques: Different methods, such as deep breathing and relaxing muscles,

that are used to reduce tension and anxiety, and control pain. 

Remission: When the signs and symptoms of cancer decrease or go away. There may still be

some cancer in the body, but there is less than before. 

48
S.C.—subcutaneous (sub-cu-TA-ne-us): It means to get medicine under the skin. Many can

be given this way.

Specialist: A doctor who has studied and trained in a certain area of medicine.

Standard treatment: In medicine, treatment that experts agree is appropriate, accepted,

and widely used. Health care providers are obligated to provide patients with standard

treatment. Also called standard of care or best practice.

Trust: This type of legal document gives your money and possessions to someone else. 

Tumor (TOO-mur): An abnormal mass of tissue.

Will: This type of legal document divides your property among your heirs. 

49
50

Personal Affairs Worksheet

By filling out this worksheet, you can help family members deal with your personal affairs

after you’re gone. Be sure to let your loved ones know about this list. It will help them cope

with your death and find comfort in knowing your needs and wishes were met. Try to keep it

updated and in a safe place. Make sure that only those you trust have access to it.

Banks, savings and loans

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Life insurance company

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Health insurance company

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Disability insurance company

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________
Homeowners’ or renters’ insurance company

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Burial insurance company

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Unions and fraternal organizations

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Attorney

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Accountant

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

51
Executor of the estate

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Internal Revenue Service

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Social Security office

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Pension or retirement plans

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Department of Veterans Affairs

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

52
Investment companies

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Mortgage companies

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Credit card companies

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

All other lenders

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Employer

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

53
Faith or spiritual leader/organization

Contact Information ______________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

What Needs to be Done ___________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Safety deposit box keys and box location

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Safe, lock combinations

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

Location of other important items (such as jewelry)

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

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Notes

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

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______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

______________________________________________________________________________

55
Notes

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56

NIH Publication No. 08-0856

Revised August 2005

Reprinted March 2008