Young People With Cancer

A HANDBOOK FOR PARENTS

NATIONAL INSTITUTES OF HEALTH

National Cancer Institute

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Public Health Service

National Institutes of Health

Young People With Cancer

A HANDBOOK FOR PARENTS
Contents

Introduction............................................................................1

What Is Cancer? .....................................................................3

What Happens When Your Child Is Diagnosed 

With Cancer?.............................................................7

Talking With Your Child’s Doctor..............................................7

Questions to Ask the Doctor and Treatment Team..............9

How Can My Child Get the Best Treatment? ..........................11

Who Should Treat My Child?.............................................11

What Is Standard Therapy Versus a Clinical Trial?............12

Where Should My Child Be Treated? .................................14

How Do You Talk With Your Child About Cancer?...........15

Why Should I Tell My Child?...................................................15

What Questions Do Parents Have? ..........................................15

When Should My Child Be Told?.......................................17

Who Should Tell My Child?...............................................17

Who Should Be There? .......................................................17

What Should My Child Be Told?........................................17

Up to 2 Years Old ..........................................................18

2 to 7 Years Old.............................................................18

7 to 12 Years Old...........................................................20

12 Years and Older ........................................................20

What Are Some Questions That Your Child May Ask?............20

Why Me?.............................................................................21

Will I Get Well?...................................................................21

What Will Happen to Me?..................................................21

Why Do I Have to Take Medicine When I Feel Okay? ......22
What About Treatment?.......................................................23

What Are the Different Types of Cancer Treatment? ..............25

Surgery.................................................................................26

Helping Your Child Face Fears about Surgery ..............26

Possible Side Effects of Surgery.....................................27

Children and Amputation ............................................27

Chemotherapy ..........................................................................29

Oral Chemotherapy ............................................................30

Intravenous Chemotherapy................................................30

Side Effects of Chemotherapy ............................................32

Table: Side Effects of Chemotherapy ................................33

Long-term Side Effects of Chemotherapy ..........................40

Radiation Therapy ....................................................................40

How Does Radiation Therapy Work? .................................40

Getting Ready for Radiation Therapy.................................40

What Will Happen During Radiation Therapy? ................41

Lessening Your Child’s Fears...............................................41

Side Effects of Radiation Therapy.......................................41

Table: Side Effects of Radiation Therpy ............................42

Long-term Side Effects of Radiation Therapy.....................45

Immunotherapy........................................................................46

Bone Marrow and Peripheral Blood Stem Cell Transplants.....48

Supportive Care...................................................................50

Graft Versus Host Disease ...................................................50

Table: Supportive Care for BMT and PBSCT.....................51

What About Complementary and Alternative Treatment

(CAM)? ................................................................................51

Questions to Ask Your Child’s Health Care Provider

About Complementary and Alternative Therapies.......52
What About Hospitalization?...................................................53

What Are the Common Medical Procedures?....................55

Table: Common Medical Procedures and Tests .................57

What Are Some Common Health Issues? ..........................63

Pain ...........................................................................................63

How Is Pain Managed? .......................................................64

How Will I Know How Bad My Child’s Pain Is?................65

Wong-Baker FACES Pain Rating Scale..............................66

What If the Pain Is Not Being Controlled?........................66

Diet............................................................................................67

Infections ..................................................................................71

Immunizations..........................................................................71

Bleeding ....................................................................................71

Transfusions ..............................................................................72

Dental/Mouth Care...................................................................72

Mouth Care During Radiation Therapy .............................73

Mouth Care When Blood Counts Are Low........................73

Mouth Care When Your Child Has Mouth Sores ..............73

When Should You Call the Doctor?....................................74

Call the Doctor If ............................................................74
How Do You Move on With Life?........................................77

Life Goes On .............................................................................78

Your Child...........................................................................78

School and Friends........................................................78

Supporting Your Child..................................................81

You.......................................................................................81

Brothers and Sisters.............................................................82

Family and Friends..............................................................84

Financial and Insurance Issues.................................................85

What Does the Future Hold?...............................................86

Ongoing Health Care................................................................86

Insurance Issues in the Future..................................................88

What Care Is Available When the Cancer 

Cannot Be Cured?...........................................................89

Home Care ................................................................................89

Hospice Care .............................................................................90

Day-to-Day Concerns ...............................................................91

Resources ..............................................................................92

Appendix—Common Childhood Cancers .........................95

Dictionary ...........................................................................101

Introduction

Young People with Cancer gives you information on all stages of

your child’s illness. It tells you what to expect and suggests ways

to prepare for different situations. It can guide you to become your

child’s best advocate or supporter. You know your child better

than anyone else—your child’s personality, how your child copes

with unknown situations and fear, what makes your child laugh or

cry. You know what works best—how to humor and talk to your

child and how to help your child relax. Try to remember that you

are a key part of your child’s treatment.

This booklet was reviewed by health professionals and, most

important, by parents of children with cancer. Although this booklet does not tell you everything about cancer in children, it is a

start, and it directs you to other sources of information. You may

want to share this booklet with friends and relatives who want to

learn more about what you and your child are going through. Use

this booklet to learn:

■ what cancer is and what the different kinds of cancer are

■ how to find the best treatment

■ about cancer treatment and side effects

■ about common medical procedures

■ how to talk to your child about cancer

■ how to handle your own feelings, your child’s feelings, and

the feelings of others

■ about common health issues

■ what the future holds and

■ where to get more information.

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Because this booklet contains so much information, it may be

useful to refer to the different sections as you need them. You can

use the Table of Contents to find the sections of most interest to

you. All the words in the dictionary are printed in bold the first

time they appear in the text and are defined in the Dictionary

beginning on page 103. The definitions are taken from the

National Cancer Institute’s CancerNet dictionary, which is 

available online at:

http://www.cancernet.nci.nih.gov/dictionary.html

More children than ever are surviving childhood cancer. Over

the last 30 years, survival into adulthood increased from 30 percent to 80 percent. There are new and better drugs and methods to

help children deal with the side effects of treatment. And children

who have had cancer now have a better quality of life throughout

childhood and into adulthood; fewer long-term ill effects follow

the treatment.

Yet, in spite of all this good news, cancer is still a serious 

disease. You are not alone in facing your fears; help is available. 

A treatment team—doctors, radiation therapists, rehabilitation 

specialists, dietitians, oncology nurses, and social workers, among

others—can help you and your child deal with the disease. They

will also help ensure that your child gets the best treatment available with as few ill effects as possible. Resources such as this booklet provide information on childhood cancers and their treatment,

suggestions on how to make your child as comfortable and as

pain-free as possible, and advice on how to make time for family

and friends. 

2
What Is Cancer?

Cancer is a group of many related diseases that begin in cells,

the body’s basic unit of life. To understand cancer, it is helpful to

know what happens when normal cells become cancerous.

The body is made up of many types of cells. Normally, cells

grow and divide to produce more cells only when the body needs

them. This orderly process helps keep the body healthy. Sometimes, however, cells keep dividing when new cells are not needed.

These extra cells form a mass of tissue called a growth or tumor.

Tumors can be benign or malignant.

■ Benign tumors are not cancer. They can often be removed

and, in most cases, they do not come back. Cells from

benign tumors do not spread to other parts of the body.

Most important, benign tumors are rarely a threat to life.

■ Malignant tumors are cancer. Cells in these tumors are

abnormal and divide without control or order. They can

invade and damage nearby tissues and organs. Also, cancer

cells can break away from a malignant tumor and enter the

bloodstream or the lymphatic system. That is how cancer

spreads from the original cancer site to form new tumors in

other organs. Cancer that has spread is called metastatic

cancer.

Most cancers are named for the organ or type of cell in which

they begin. When cancer spreads (metastasizes), cancer cells are

often found in nearby or regional lymph nodes (sometimes called

lymph glands). If the cancer has reached these nodes, it means

that cancer cells may have spread to other organs, such as the

liver, bones, or brain. When cancer spreads from its original location to another part of the body, the new tumor has the same

kind of abnormal cells and the same name as the primary tumor.

For example, if lung cancer spreads to the brain, the cancer cells 

in the brain are actually lung cancer cells. The disease is called

metastatic lung cancer (not brain cancer).

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Children can get cancer in the same parts of the body as adults

do, but some types of cancer are more common in children. The

most common form of childhood cancer is leukemia. Leukemia is

cancer of the blood. It develops in the bone marrow, which is a

spongy substance that fills the inside of the bones and makes

blood cells. Other cancers often found in children are brain

tumors, childhood lymphomas, Hodgkin’s disease, Wilms’

tumors, neuroblastomas, osteogenic sarcomas, Ewing’s sarcomas,

retino-blastomas, rhabdomyosarcomas and hepatoblastomas. The

Appendix contains information on the major types of 

childhood cancer. 

Children’s cancers do not always act like, get treated like, or

respond like adult cancers. Avoid reading about adult cancer to

learn about your child’s prognosis. Childhood cancers can occur

suddenly, without early symptoms, and have a high rate of cure.

You can find more details about these types of cancer in other

National Cancer Institute (NCI) booklets. NCI’s What You Need to

Know About... brochures have information about specific types of

cancer. (See page 96 for more information on available booklets.)

To receive copies from the NCI-supported Cancer Information

Service (CIS), call 1-800-4-CANCER (1-800-422-6237) or TTY at 

1-800-332-8615. Also, many NCI publications may be viewed or

ordered on the Internet at http://cancer.gov/publications.

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6
What Happens 

When Your Child Is

Diagnosed With Cancer?

After your child’s cancer has been diagnosed, a series of tests

will be done to help identify your child’s specific type of cancer.

Called staging, this series of tests is sometimes done during diagnosis. Staging determines how much cancer is in the body and

where it is located. To stage solid tumors, the doctor looks at the

size of the tumor, the lymph nodes affected, and where it has

spread. To stage leukemia, the doctor checks the bone marrow,

liver, spleen, and lymph nodes around the sites where the

leukemia can hide. Staging must be done to determine the best

treatment. Many different tests can be used in staging, such as 

x-rays, MRIs, CT (or CAT) scans, and others. See pages 

57-62 for a description of the various tests.

As soon as your child is suspected to have or is diagnosed with

cancer, you will face decisions about who will treat your child,

whom to ask for a second opinion (if desired or if the diagnosis is

not clear), and what the best treatment is. After your child’s staging is complete, the treatment team develops a plan that outlines

the exact type of treatment, how often your child will receive

treatment, and how long it will last. 

Talking With Your Child’s Doctor

Your child’s doctor and the treatment team will give you a lot

of details about the type of cancer and possible treatments. Ask

your doctor to explain the treatment choices to you. It is important for you to become a partner with your treatment team in

fighting your child’s cancer. One way for you to be 

actively involved is by asking questions. You may find it hard to 

7
concentrate on what the doctor says, remember everything you

want to ask, or remember the answers to your questions. Here are

some tips for talking with those who treat your child:

■ Write your questions in a notebook and take it to the

appointment with you. Record the answers to your questions and other important information.

■ Tape record your conversations with your child’s health

care providers.

■ Ask a friend or relative to come with you to the appointment. The friend or relative can help you ask questions and

remember the answers.

8

Normal cells

Cancer cells
Questions to Ask the Doctor and Treatment Team

When your child’s treatment team gives you information about

your child’s cancer, you may not remember everything. That is 

natural. It is a lot of information, and your emotions will get in

the way as you try to take it all in. Use the three techniques listed

above—write, tape record, and ask a friend for help—to help you

retain the information you need to be an effective partner with

your child’s treatment team. Make sure you know the answers 

to these questions: 

About the diagnosis—

• What kind of cancer does my child have?

• What is the stage, or extent, of the disease?

• Will any more tests be needed? Will they be painful? 

How often will they be done?

About treatment choices—

• What are the treatment choices? Which do you recommend for my child? Why?

• Would a clinical trial (carefully designed studies that test

new kinds of treatments) be right for my child? Why?

• Have you treated other children with this type of cancer?

How many?

• What are the chances that the treatment will work?

• Where is the best place for my child to receive treatment? 

Are there specialists—such as surgeons, radiologists, 

nurses, anesthesiologists, and others— trained in 

pediatrics? Can my child have some or all of the treatment in our home town?

About the treatment—

• How long will the treatment last?

• What will be the treatment schedule?

• Whom should we ask about the details of financial matters?

(continued on next page) 

9
Questions to Ask Your Doctor and Treatment Team

(continued from previous page) 

• Will the treatment disrupt my child’s school schedule?

About side effects—

• What possible side effects of the treatment can occur,

both right away and later?

• What can be done to help if side effects occur?

About the treatment location—

• How long will my child be in the hospital?

• Can any treatment be done at home? Will we need any

special equipment?

• Does the hospital have a place where I can stay overnight

during my child’s treatment?

About school and other activities—

• Is there a child-life worker specialist (a professional who

is responsible for making the hospital and treatment

experience less scary for the child) to plan play therapy,

schoolwork, and other activities?

• When can my child go back to school?

• Are there certain diseases my child cannot be around?

Should I have my child and his or her siblings immunized

against any diseases?

• Will my child need tutoring?

• Is information available to give to the school system

about my child’s needs as he or she receives treatment?

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How Can My Child Get the Best Treatment?

Before your child starts treatment, make sure you feel comfortable with your choice of the doctor and hospital to treat your

child’s cancer. 

Who Should Treat My Child?

It is best for your child to be treated by a health care provider

who specializes in the diagnosis and treatment of children’s 

cancers—a pediatric oncologist.

Once you have chosen a doctor and discussed a diagnosis and

treatment plan, but before treatment has started, you may want to

get a second opinion—that is, you may want to ask a different

doctor to review the diagnosis and plan. Some insurance companies require a second opinion; some may pay for it if you ask. 

A second opinion may also be obtained during the course of treatment if it is not working as hoped. Most doctors support a parent’s

decision to get a second opinion and many even suggest you do

so. To find specialists to get a second opinion, you might—

■ Ask your child’s doctor to suggest a specialist for a second

opinion.

■ Get the names of doctors who specialize in treating 

childhood cancer from the local medical society, a nearby

hospital, or a medical school. You can find the telephone

numbers for these organizations in your telephone directory or the Yellow Pages.

■ Contact an NCI Comprehensive Cancer Center for a second

opinion and possible treatment. Considered “Centers of

Excellence,” these cancer centers’ programs have been

reviewed and selected by NCI. They offer the most up-todate diagnosis and treatment of cancer and are devoted to

both basic and clinical research. To obtain information

about the location of the different cancer centers, call 

the CIS at 1-800-4-CANCER (1-800-422-6237) or TTY at 

1-800-332-8615.

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■ Contact the Pediatric Oncology Branch, NCI, located in

Bethesda, Maryland, to ask for a second opinion appointment. They can be reached at 1-877-624-4878.

What Is a Standard Therapy Versus a Clinical Trial?

Your child’s doctor may recommend a standard therapy or a

clinical trial. Standard therapy is the best treatment available outside of clinical trials for a specific type and stage of cancer. 

A cancer clinical trial is a research study. In a clinical trial, a

new treatment is used with a group of patients to find out:

■ if it is safe

■ if it destroys the cancer

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■ if it has side effects and how severe they might be

■ if it is better than standard therapy. 

These new treatments are first tested in the laboratory and on

animals. If a treatment shows promise of being better than the

standard therapy, it is tested with patients in a clinical trial.

Most clinical trials are carried out in steps called phases. Each

phase answers different questions about the treatment. Patients

may be eligible for studies in different phases, depending on their

general condition and the type and stage of their cancer.

■ Phase I studies test new treatments in humans to determine if the treatment can be given safely and if it has

harmful side effects. Researchers look for the best dose 

and the best way to deliver the treatment. Because less is

known about the possible risks and benefits in Phase I,

these studies usually include only a limited number of

patients who would not be helped by other treatments.

■ Phase II studies focus on learning whether the new treatment actually has an anticancer effect. As in Phase I, only a

small number of people take part because of the risks and

unknowns involved.

■ Phase III studies compare the results of people receiving

the new treatment with results of people receiving standard

therapy. In most cases, studies move into Phase III testing

only after a treatment shows promise in Phases I and II.

Phase III studies may include hundreds of people around

the country.

■ Phase IV studies evaluate the side effects of the new treatment—once it has been approved and is being marketed—

that were not apparent in the Phase III trial. Thousands of

people are involved in a Phase IV trial.

Clinical trials have played an important role in producing new

and better treatments. About two-thirds of children with cancer

are treated in clinical trials.

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You and your child’s doctor can learn about clinical trials from

PDQ®—NCI’s cancer information database. PDQ® contains:

■ descriptions of current clinical trials, including information

about the purpose of the study, who is eligible for the

study, details of the treatment program, and the names and

addresses of doctors and places conducting the study

■ the latest treatment information for most types of cancer

(also available by fax at 1-800-624-2511 or 301-402-5874)

You may ask your doctor to obtain information from PDQ®, or

you may call the NCI-supported Cancer Information Service (CIS)

at 1-800-4-CANCER (1-800-422-6237) or TTY at 1-800-332-8615 

to ask for a PDQ® search. Read more about PDQ® on the NCI

CancerNet Web site at http://cancernet.nci.nih.gov/trials.html.

To find out about NCI trials taking place on the main campus of

the National Institutes of Health in Bethesda, Maryland, you may

also call the NCI’s Pediatric Oncology Branch at 1-877-624-4878. 

Where Should My Child Be Treated?

Once the treatment is planned, you will need to decide where

your child will be treated. Treating children is different from treating adults. Whenever possible, it is best for your child to begin

treatment at a hospital or treatment center where many children

have been treated for cancer. Selecting a hospital and staff specializing in treating childhood cancer will help your child receive 

the best available treatment right from the beginning. To obtain

information about hospitals and treatment centers that specialize

in treating childhood cancer, call the CIS at 1-800-4-CANCER 

(1-800-422-6237) or TTY at 1-800-332-8615.

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How Do You Talk With Your

Child About Cancer?

Your first question may be, “Should I tell my child about the

cancer?” You may want to protect your child, but children usually

know when something is wrong. Your child may not be feeling

well, may be seeing the doctor often, and may have already had

some tests. Your child may notice that you are afraid. No matter

how hard you try to keep information about the illness and treatment from your child, others—such as family, friends, and clinic

or hospital staff—may inadvertantly say things that let your child

know about the cancer. In addition, it will upset your child to find

out that you were not telling the truth; your child depends on you

for honest answers.

Why Should I Tell My Child?

Telling your child about his or her cancer is a personal matter,

and family, cultural, or religious beliefs will come into play. It is

important to be open and honest with your child because children

who are not told about their illness often imagine things that are

not true. For example, a child may think he or she has cancer as

punishment for doing something wrong. Health professionals generally agree that telling children the truth about their illness leads

to less stress and guilt. Children who know the truth are also more

likely to cooperate with treatment. Finally, talking about cancer

often helps to bring the family closer together and makes dealing

with the cancer a little easier for everyone.

What Questions Do Parents Have?

Parents have many questions about talking with their children

about the diagnosis. Perhaps you have asked some of these yourself.

15
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When Should My Child Be Told?

Because you are probably the best judge of your child’s personality and moods, you are the best person to decide when your

child should be told. Keep in mind, though, that your child is 

likely to know early on that something is wrong, so you may want

to tell your child soon after the diagnosis. In fact, most parents say

it is easiest to tell them then. Waiting days or weeks may give your

child time to imagine worse things than the truth and develop

fears that may be hard to dispel later. Certainly, it would be easier

for your child if he or she is told before treatment starts.

Who Should Tell My Child?

The answer to this question is personal. As a parent, you 

may feel that it is best for you to tell your child. Some parents,

however, find it too painful to do so. Other family members or 

the treatment team—doctor, nurse, or social worker—may be able

to help you. They may either tell your child for you or help you

explain the illness.

Thinking about what you are going to say and how to say it

will help you feel more relaxed. But how do you decide just what

to say? Family and close friends, members of the treatment team,

parents of other children who have cancer, members of support

groups (you can find information about them at the end of this

booklet), and clergy members can offer ideas.

Who Should Be There?

Your child needs love and support when hearing the diagnosis.

Even if the doctor explains the illness, someone your child trusts

and depends upon should be present. Having the support of other

family members at this time can be very helpful.

What Should My Child Be Told?

How much information and the best way to relate this information depends on your child’s age and what your child can

understand. Being gentle, open, and honest is usually best.

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The following sections describe what most children in various

age groups are likely to understand. These guidelines are general;

each child is different. Your child may fit into more than one or

none of these categories.

■ Up to 2 Years Old

Children this young do not understand cancer. They understand what they can see and touch. Their biggest concern is

what is happening to them right now. They worry most about

being away from their parents.

After children are a year old, they think about how things feel

and how to control things around them. Very young children

are most afraid of medical tests. Many cry, run away, or squirm

to try to control what is happening.

Because children begin to think about and understand what 

is going on around them at about 18 months, it is best to be

honest. Be truthful about trips to the hospital and explain 

procedures that may hurt. You can tell your child that needlesticks will hurt a minute and that it is okay to cry. Being 

honest lets your child know that you understand and accept

his or her feelings and helps your child trust you.

When you can, give your child choices. For example, if a medicine is taken by mouth, you might ask if your child would like

it mixed in apple juice, grape juice, or applesauce.

■ 2 to 7 Years Old

When children are between the ages of 2 and 7, they link

events to one thing. For example, they usually tie illness to a

specific event such as staying in bed or eating chicken soup.

Children this age often think their illness is caused by a 

specific action. Therefore, getting better will “just happen” 

or will come if they follow a set of rules.

These approaches might help when talking with a child in this

age group:

18
• Explain that treatment is needed so the hurting will go

away or so the child can get better and play without 

getting so tired.

• Explain that the illness or treatment is not punishment for

something the child has done, said, or thought.

• Be honest when you explain tests and treatments. Remind

the child that all of these things are being done to get rid

of the cancer and to help him or her get well.

• Use simple ways to explain the illness. For example, try

talking about the cancer as a contest between “good” cells

and “bad” cells. Having treatment will help the good cells

to be stronger so that they can beat the bad cells.

19
■ 7 to 12 Years Old

Children ages 7 to 12 are starting to understand links between

things and events. For example, a child this age sees his or her

illness as a set of symptoms, is less likely to believe that something he or she did caused the illness, understands that getting

better comes from taking medicines and doing what the doctor

says, and is able to cooperate with treatment.

You can give more details when explaining cancer, but you

should still use situations your child may be used to. You

might say that the body is made of up different types of cells,

and these cells have different jobs to do. Like people, these

cells must work together to get the job done. You might

describe the cancer cells as “troublemakers” that get in the way

of the work of the good cells. Treatment helps to get rid of the

troublemakers so that other cells can work well together.

■ 12 Years and Older

Children over 12 years old can often understand complicated

relationships between events. They can think about things that

have not happened to them. Teenagers tend to think of illness in

terms of specific symptoms, such as tiredness, and in terms of limits or changes in their everyday activity. But because they also can

understand the reason for their symptoms, you can explain cancer

as a disease in which a few cells in the body go “haywire.” These

“haywire” cells grow more quickly than normal cells, invade other

parts of the body, and get in the way of how the body usually

works. The goal of treatment is to kill the “haywire” cells. The body

can then work normally again, and the symptoms will go away.

What Are Some Questions That Your Child May Ask?

Children are naturally curious about their disease and have

many questions about cancer and cancer treatment. Your child

will expect you to have answers to most questions. Children may

begin to ask questions right after diagnosis or may wait until later.

Here are some common questions and some ideas to help you

answer them.

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Why Me?

A child, like an adult, wonders “Why did I get cancer?” A child

may feel that it is his or her fault, that somehow he or she caused

the illness. Make it clear that not even the doctors know exactly

what caused the cancer. Neither you, your child, nor his or her

brothers or sisters did, said, or thought anything that caused the

cancer. Stress also that cancer is not contagious, and your child

did not “catch” it from someone else.

Will I Get Well?

Children often know about family members or friends who

died of cancer. As a result, many children are afraid to ask if they

will get well because they fear that the answer will be “no.” Thus,

you might tell your child that cancer is a serious disease, but that

treatment—such as medicine, radiation, or an operation—has

helped get rid of cancer in other children, and the doctors and

nurses are trying their best to cure your child’s cancer, too.

Knowing that caring people—such as family, doctors, nurses,

counselors, and others—surround your child and your family may

also help him or her feel more secure.

What Will Happen to Me?

When your child is first diagnosed with cancer, many new and

scary things will happen. While at the doctor’s office, hospital, or

clinic, your child may see or play with other children with cancer

who may not be feeling well, have lost their hair, or have had

limbs removed because of cancer. Your child may wonder, “Will

these things happen to me?” Yet, your child may be too afraid to

ask questions. It is important to try to get your child to talk about

these concerns. Explain ahead of time about the cancer, treatment,

and possible side effects. Discuss what the doctor will do to help if

side effects occur. You can also explain that there are many different types of cancer and that even when two children have the

same cancer, what happens to one child will not always happen to

the other.

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Children should be told about any changes in their treatment

schedule or in the type of treatment they receive. This information helps them prepare for visits to the doctor or hospital. You

may want to help your child keep a calendar that shows the days

for doctor visits, treatments, or tests. Do not tell younger children

about upcoming treatments far ahead of time if it makes them

nervous.

Why Do I Have to Take Medicine When I Feel Okay?

With cancer, your child may feel fine much of the time but

need to take medicine often. Children do not understand why

they have to take medicine when they feel well. You may want 

to remind your child of the reason for taking the medicine in 

the first place. For example, a child could be told: “Although you 

are feeling well, the bad cells are hiding. You must take the 

medicine for a while longer to find the bad cells and stop them

from coming back.”

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What About Treatment?

To plan the best treatment, the doctor and treatment team will

look at your child’s general health, type of cancer, stage of the disease, age, and many other factors. Based on this information, the

doctor will prepare a treatment plan that outlines the exact type of

treatment, how often your child will receive treatment, and how

long it will last. Each child with cancer has a treatment plan that

is chosen just for that child; even children with the same type of

cancer may receive different treatments. Depending on how your

child responds to treatment, the doctor may decide to change the

treatment plan or choose another plan.

Before treatment begins, your child’s doctor will discuss the

treatment plan with you, including the benefits, risks, and side

effects. Then you and the treatment team will need to talk with

your child about the treatment. After the doctor fully explains the

treatment and answers your questions, you will be asked to give

your written consent to go ahead with treatment. Depending on

your child’s age and hospital policy, your child may also be asked

to give consent before treatment.

The treatment plan may seem complicated at first. But the doctor and treatment team will explain each step, and you and your

child will soon become used to the routine. Many parents find it

helpful to get a copy of the treatment plan to refer to as the treatment proceeds. It also helps them in arranging their own schedules. Do not be afraid to ask questions or speak up if you feel

something is not going right. Your child’s doctor is often the best

person to answer your questions, but other members of the treatment team can give you information, too. If you feel as though

you need extra time with the doctor, schedule a meeting or phone

call. Remember, you are part of the treatment team and should be

involved in your child’s treatment.

23
24
What Are the Different Types of Cancer Treatment?

The types of treatment used most often to treat cancer are 

surgery, chemotherapy, radiation therapy, immunotherapy,

and bone marrow or peripheral blood stem cell transplantation. Doctors use these treatments to destroy cancer cells.

Depending on the type of cancer, children may have one kind of

treatment or a combination of treatments. Most children receive a

combination of treatments, called combination therapy.

Treatments for cancer often cause unwanted or unpleasant side

effects such as nausea, hair loss, and diarrhea. Side effects occur

because cancer treatment that kills cancer cells can hurt some 

normal cells, too. As your child begins treatment, you may want

to keep the following in mind.

■ The kinds of side effects and how bad they will be depend

on the kind of drug, the dosage, and the way your child’s

body reacts.

■ The doctor plans treatment so that your child has as few

side effects as possible.

■ The doctor and treatment team have ways to lessen your

child’s side effects. Talk with them about things that can 

be done before, during, and after treatment to make your

child comfortable.

■ Lowering the treatment dosage slightly to eliminate

unpleasant side effects usually will not make the treatment

less able to destroy cancer cells or hurt your child’s chances

of recovery.

■ Most side effects go away soon after treatment ends.

Remember that not every child gets every side effect, and some

children get few, if any. Also, how serious the side effects are varies

from child to child, even among children who are receiving the

same treatment. The doctor or treatment team can tell you which,

if any, side effects your child is likely to have and how to handle

them. If you know what side effects can occur, you can recognize

them early.

25
Surgery

For many solid tumors, surgery is an essential part of the treatment. Surgery is a local therapy to remove the tumor. Tissue

around the tumor and nearby lymph nodes may also be

removed during the operation. Sometimes radiation or

chemotherapy is used first to shrink the tumor before it is

removed. Shrinking the tumor makes the surgery easier.

Helping Your Child Face Fears About Surgery

Your child is likely to have many worries about surgery. Your

child may ask:

■ What is it like to be put to sleep? 

■ Will I feel a lot of pain?

■ Will my body be changed?

■ How will I feel about my body after the operation?

■ Will my parents be with me when I wake up?

Here are some suggestions that might help your child face surgery:

■ Give honest answers to your child’s questions. Your child

may lose trust in you if what you say does not match what

really happens. Your child needs to trust you.

■ Learn as much as you can about your child’s operation.

To give the correct answers to your child’s questions, you

will need to find out as much as possible about what will

happen. The doctors and other members of the treatment

team can give you the facts you need to prepare your child.

■ Visit the operating and recovery rooms before the surgery.

To help children get ready for surgery, many hospitals

encourage them to visit the rooms where they will be during surgery and recovery. They can meet and talk with the

people who will be there. For instance, young children may

be shown a surgical mask and given one to try on or to put

on a toy or another person.

26
■ Talk with your child about feelings and concerns. 

Above all, try to get your child to talk about any feelings 

or concerns he or she has about the surgery.

Possible Side Effects of Surgery

Side effects from surgery depend on the location of the tumor,

the type of operation, the child’s general health, and other factors.

Common side effects include pain, headaches, nausea, and constipation. These effects may be from the surgery, pain medicine, or

lack of exercise. The doctor will give your child medicine, as needed, to help ease these side effects and other symptoms.

Children and Amputations

In the past, amputations were often necessary to remove bone

tumors in the arms and legs. Depending on the type of tumor,

however, doctors more and more can use procedures that spare the

limb and make amputation unnecessary. Fewer children suffer the

loss of a limb. Your child’s treatment team will explain the options

available to you. 

For some children, however, amputation remains the best

choice. These children have special concerns. They wonder what it

will be like not to have an arm or leg. Will they be able to do everyday things? How will they do them? How will others act toward

them? They may feel a lack of wholeness after surgery. Sometimes it

is more difficult for parents than for children to adjust to an amputation. Generally, younger children adjust more quickly. Adolescents

have special concerns. They may be more sensitive about the way

they look to others. They also may worry about how the amputation will affect developing and keeping relationships, participating

in sports activities, getting married, and having children.

It may be helpful for your child to see how others have adjusted to an amputation. Meeting other children who have had amputations and who are doing well can be very helpful. Your child 

will learn that he or she can have a full and active life—most children can participate in the same activities they did before 

having an amputation. They can still walk, run, ride a bicycle, 

ski, swim, and even mountain-climb. It may also help for the

27
treatment team to show your child an artificial limb, or prosthesis,

and other devices or aids that will help with movement.

After surgery, your child will be aware of a bulky dressing or

bandage at the site of the surgery. Your child may feel “phantom

pain,” an eerie but common feeling. Sensations such as cold, itching, and pain are felt in the limb as if it were still part of the body.

Doctors do not know what causes phantom pain. The best explanation is that the brain has been accustomed to receiving messages from the nerves in the limb that has been amputated. It

takes time for the brain to get used to the nerve fibers that remain

and the new messages from the stump. Sometimes a light massage

and changing the position of the stump will offer some relief. The

doctor will usually start medication ahead of time to ease your

child’s pain and can also order some medicine to treat the phantom pain when it happens.

As part of the rehabilitation, a physical therapist will help your

child with exercises to strengthen the muscles needed to support a

temporary prosthesis. These exercises are often hard and can be

painful, so your child needs to be encouraged and supported during this time. Once the muscles become stronger, the doctor may

order a temporary prosthesis for your child. The prosthesis is made

by a prosthetist, a person skilled in making artificial limbs. The

temporary prosthesis will be bulkier and heavier than the permanent one. The way it looks may be disappointing, but the added

heaviness will further strengthen the stump and the bulkiness will

protect it. Once the stump is fully healed, and your child is able to

move the limb well with the temporary prosthesis, fitting for the

permanent prosthesis will begin.

Health professionals will be available to help your child and

family throughout the entire process—from making treatment

choices to adjusting to the permanent prosthesis. Drawing upon

the strength and comfort of family members and joining a support

group may also help you cope.

28
Chemotherapy

Chemotherapy is the use of “anticancer drugs” to treat cancer.

Chemotherapy is systemic therapy, which means that the

drugs flow through the bloodstream to nearly every part of the

body to kill cancer cells wherever they may be. Because some

anticancer drugs work better together than alone, chemotherapy may consist of more than one drug. This approach is called

combination chemotherapy.

Depending on the type of cancer your child has and which

drugs are used, chemotherapy may be given in one or more of

these ways:

■ By mouth (oral medication)—The drugs are swallowed in

liquid or pill form. If your child has trouble swallowing

pills, you can break the pills into smaller pieces, or you

29
may crush and mix them with applesauce, jam, pudding,

or other food that your child likes.

■ Intravenously (IV)—The drugs are injected by needle into

a vein or into an IV line.

■ Intramuscular injection (IM)—The drugs are injected by

needle into the muscle. Your child will know it as a “shot.”

■ Subcutaneous injection (SC)—The drugs are injected by

needle just below the skin. Your child will also know this 

as a “shot.”

■ Intrathecal injection (IT)—The drugs are injected by 

needle into the spinal fluid.

Although your child may be able to receive chemotherapy

treatments at home, he or she will probably need to go to the hospital or doctor’s office to receive IV drugs or injections. Depending

on the medicine, your child may need to stay in the hospital, perhaps overnight or longer. 

Oral Chemotherapy

When possible, involve your child in this treatment. For example, you may want to keep a special calendar to help your child

track when medicine should be taken. Older children, particularly

adolescents, may want to be responsible for taking and keeping

track of their medication. Even so, you still need to make sure that

the medicine is being taken as ordered. Be sure to notify the doctor if your child misses any doses of medication or if he or she

vomits them up. 

Intravenous Chemotherapy

Your child will get the drug through a thin needle put into a

vein, usually on the hand or in the arm. In babies and very small

children, the needle may be placed in a vein in the scalp.

Although getting chemotherapy usually does not hurt, it may be

painful when the IV needle is put in, and the drugs may cause a

burning feeling. If the drug leaks from the vein, it may burn the

skin, so care must be taken to make sure the IV line is firmly in

30
place. The nurse or doctor must act right away if the needle comes

out of the vein. 

Another way to give IV chemotherapy is through a catheter, a

thin plastic tube placed into a large vein in the body. The catheter

remains in place during the course of treatment so that drugs can

be given without having to place a needle into the vein over and

over again. The most commonly used are central venous catheters.

While the child is under general or local anesthesia, the catheter is

usually put into a large vein in the chest by making a small incision (cut) near the collarbone. Two types of central venous

catheters are commonly used. 

■ One type of catheter is an external venous catheter (for

example, a Broviac or Hickman catheter). In this type of

catheter, the plastic tube extends outside the body.

31
■ The second type (for example, a Port-a-Cath catheter) is

placed under the skin and needs to have a needle placed

into it each time it is used. This type of catheter may be

more appealing to adolescents or for families who cannot

take care of a catheter that needs special daily care.

In addition to chemotherapy, pain medicine and blood transfusions can be given through the catheter, and blood can be

drawn from the body through the catheter.

Side Effects of Chemotherapy

Side effects can occur when the anticancer drugs affect not

only the cancer cells but healthy cells as well. Different drugs produce different side effects. Ask your doctor or nurse what side

effects your child is most likely to have and when they are likely

to occur. Side effects are either acute (they happen right away) or

delayed (they happen days, weeks, or years after chemotherapy).

The most common side effects of chemotherapy are listed in the

following chart. 

You may also find these NCI materials useful:

■ Chemotherapy and You: A Guide to Self-Help During Treatment

discusses side effects from chemotherapy and ways to cope

with them

■ Eating Hints for Cancer Patients provides suggestions for how

to eat well during cancer treatment. 

You can receive copies from the NCI-supported Cancer

Information Service (CIS) by calling 1-800-4-CANCER 

(1-800-422-6237) or TTY at 1-800-332-8615. Also, many 

NCI publications may be viewed or ordered on the Internet at

http://cancer.gov/publications.

32
33

Side Effects of Chemotherapy

Side Effect What You Can Do

DIGESTIVE TRACT PROBLEMS

Nausea and 

vomiting

• Ask your child’s doctor about medicines 

to control nausea and vomiting and/or

sedatives to help your child sleep through

nausea.

• Ask your doctor if it is alright to give your

child milk or antacids before taking oral

anticancer drugs. Certain oral anticancer

drugs should not be taken with milk.

• Feed your child light foods 3–4 hours

before treatment.

• Encourage your child to eat small

amounts of food often and slowly.

• Avoid serving sweet, greasy, and spicy

foods or foods that have strong odors.

• Serve your child cold meals, such as sandwiches, instead of hot foods.

• Encourage your child to take liquids first,

and then wait 30–60 minutes before eating solids. Most children tolerate liquids

better than solids. 

• Have your child rest after meals.

• If your child is vomiting, do not give anything to eat or drink until it is under control. Once the vomiting is under control,

give small amounts of clear liquids (for

example, water, broth, milk-free ices, and

gelatin desserts). Begin with 1 teaspoon

every 10 minutes; gradually increase the

amount to 1 tablespoon every 20 minutes; and, finally, try 2 tablespoonfuls

every 30 minutes. When your child can

keep down clear liquids, try denser liquids

(for example, strained cereal, pudding,
34

Side Effects of Chemotherapy (continued)

Side Effect What You Can Do

Nausea and 

vomiting

(continued)

Diarrhea

Constipation

Heartburn or 

stomach ache

yogurt, milkshakes, cream soups). Give

small amounts as often as your child can

keep them down. Gradually work up to

solid foods.

• Contact your doctor if your child’s 

diarrhea is severe; that is, more than 

three loose stools per day.

• Avoid giving your child fatty foods.

• Try serving foods that are high in proteins

and calories but low in fiber, such as plain

or vanilla yogurt, rice with broth, or 

noodles.

• Serve your child foods and liquids that 

are high in sodium and potassium. Foods

high in potassium that do not cause 

diarrhea are bananas, peach and apricot

juices, and boiled or mashed potatoes.

• Call your doctor if your child goes more

than 2 days without having a bowel

movement.

• Encourage your child to drink more fluids,

such as apple juice.

• Make sure your child gets some exercise.

• Serve your child high-fiber foods, such as

wholegrain breads and cereals; brown

rice; dried fruits, such as raisins and

prunes; and raw fresh vegetables.

• Ask your child’s doctor about giving your

child an antacid.

• Avoid serving your child fried or greasy

very spicy.

DIGESTIVE TRACT PROBLEMS (continued)
Sore mouth 

or throat,

mouth sores

Change in 

taste—foods

have less taste

or a bitter

metallic taste

Hair loss

• Ask your child’s doctor for medicine

(sprays, special mouthwashes, and

lozenges) for your child’s mouth.

• Give your child a sponge toothbrush or

cotton swab to brush his or her teeth.

• Have your child rinse his or her mouth

every 2–3 hours and after meals, using

baking soda solution or water.

• Avoid serving very cold, hot, spicy, or

acidic foods.

• Try serving soft foods.

• Contact your child’s doctor if your child

has mouth sores, painful areas, or patches

of red or white in the mouth.

Try well-seasoned foods or tart foods such as

oranges, lemonade, or lemon tart. (Do not try

these foods if your child has a sore mouth,

throat, or gums.) Pizza and taco chips frequently become children’s favorite foods.

• Use a mild shampoo.

• Cut your child’s hair short.

• Avoid using hair dryers and electric

curlers.

• Use a wide-tooth comb.

• If you are planning to have your child

wear a wig, select it before all your child’s

hair comes out.

35

Side Effects of Chemotherapy (continued)

Side Effect What You Can Do

MOUTH PROBLEMS

SKIN AND HAIR PROBLEMS
36

Side Effects of Chemotherapy (continued)

Side Effect What You Can Do

Hair loss

(continued)

Redness of skin

Dry, itching 

skin

Moist skin

Rashes

Sun sensitivity

Swelling, 

redness, 

or pain at the

needle site

where

chemotherapy

drugs are given

• If you want to cover your child’s head, try

a variety of hats and scarves.

• Protect your child’s scalp from sun and cold.

Call your doctor if redness, pain, or swelling

occurs.

Use mild soap and moisturizers. (If the child is

receiving radiation therapy, check with your

child’s doctor before using moisturizer.)

Wash your child’s skin 2–3 times each day. 

Pat dry with a clean towel and lightly powder

with cornstarch.

Call your child’s doctor, who may order 

medication.

• Avoid sun exposure.

• Use an SPF 30 or higher sun-blocking

lotion.

Certain drugs given intravenously can cause

burns and sores on your child’s skin if they

leak out of the vein. Tell your doctor or nurse

right away if leaking occurs.

SKIN AND HAIR PROBLEMS (continued)
37

Side Effects of Chemotherapy (continued)

Side Effect What You Can Do

KIDNEY AND BLADDER PROBLEMS

Bladder 

irritation and

infection

Change in 

urine color and

strong urine

odor

Damage to 

nerves

Stress fractures

• Give your child plenty of fluids, especially

on the day of treatment and on days

before and after treatment. The amount

of fluids depends on your child’s size, so

discuss this with your child’s doctor.

• Avoid giving drinks with caffeine.

• Report to the doctor if your child has pain

or burning when urinating, frequent urination, a feeling of having to urinate right

away, reddish or bloody urine, or if he or

she is not able to urinate.

Some drugs cause the urine to turn orange,

red, or bright yellow and to have a strong

odor. Ask the doctor if a change in urine color

is likely.

Certain chemotherapy can damage nerves,

causing difficulties with walking and talking or

jaw pain. Call the doctor if any of these problems occurs.

Some chemotherapy can weaken bones and

cause stress fractures. Notify the doctor if

your child develops pain in the arms or legs

or if your child develops a limp.

NERVE PROBLEMS

BONE PROBLEMS
38

Side Effects of Chemotherapy (continued)

Side Effect What You Can Do

SYSTEMIC PROBLEMS (involving the entire body)

Fever

Flu-like 

symptoms

Infection

Call the doctor if your child’s temperature goes

over 100.4°F or 38°C. Do not give your child

any over-the-counter medications to reduce

the fever unless told to do so by the doctor.

Call the doctor. Symptoms may occur a few

hours to a few days after chemotherapy. They

include muscle aches, headache, tiredness,

slight fever, chills, and poor appetite. These

symptoms also may be from either an infection

or the cancer.

Many anticancer drugs lower the number of

white blood cells, making it harder for the body

to fight infection. Here is what you can do:

• When possible, avoid taking your child into

crowds. Also, avoid being around people

with colds, flu, or any other contagious 

diseases, or anyone who has had a recent

immunization with a vaccine containing

live viruses (regular measles; German

measles, or rubella; mumps; polio; and

chickenpox).

• Call the doctor if your child is exposed to

known infectious illnesses (for example,

measles or chickenpox).

• If the white blood count falls too low, the

doctor may postpone the next treatment

or give a lower dose of drugs for a while.
39

Side Effects of Chemotherapy (continued)

Side Effect What You Can Do

SYSTEMIC PROBLEMS (involving the entire body) (continued)

Anemia/fatigue

Blood clotting 

problems

(bleeding)

Swelling/fluid 

retention

Allergic 

reaction

Chemotherapy can lower the bone marrow’s

ability to make red blood cells, causing 

anemia. Here is what you can do:

• Look for weakness, tiredness, dizziness,

chills, or shortness of breath. 

• Call the doctor if your child develops any

of these symptoms.

Chemotherapy can affect the body’s ability to

make platelets, the blood cells that help the

blood to clot. Without enough platelets, your

child may bleed or bruise more easily than

usual; a blood transfusion may be needed.

Here is what you can do:

• Look for bruises, small red or purple spots

under the skin, bleeding from the gums or

nose, reddish or pinkish urine, or black or

bloody bowel movements.

• Call the doctor if your child develops any

of these symptoms.

• Call the doctor if you notice swelling or

puffiness in your child’s face, hands, feet,

or abdomen. 

• Your child’s doctor may recommend limiting table salt and salty foods and/or order

medicine to get rid of the extra fluid.

• Look for fever, fainting, rash, difficulty

breathing. 

• Call the doctor immediately. This side

effect can be serious, but it is not common.
Long-term Side Effects of Chemotherapy

Ask your child’s doctor and treatment team about health 

problems that may occur later as a result of the chemotherapy. 

A few chemotherapy drugs can cause lasting damage to the body’s

organs. For example, heart problems sometimes show up years

after treatment, and children who have been treated with these

drugs may need regular checkups by a cardiologist. Your child’s

later ability to have children may also be affected by chemotherapy. Finally, depending on the specific chemotherapy your child

received, your child may be at risk of developing a second cancer.

Radiation Therapy

Radiation therapy is treatment with high-energy rays to damage or destroy cancer cells. Like surgery, radiation therapy is a

local therapy. The rays are aimed at the part of the body that

has cancer, and the treatment destroys cancer cells in the treated area. Doctors may use radiation therapy before surgery to

shrink a tumor. After surgery, radiation therapy may be used to

stop the growth of cancer cells that remain.

How Does Radiation Therapy Work?

All human body cells, including cancer cells, contain a substance called DNA. DNA tells the cells how to form and grow. In

radiation therapy, the radiation harms the DNA inside the cancer

cells, causing them to die before more cells are made. Tumors will

shrink as the cancer cells die. 

Getting Ready for Radiation Therapy

Before treatment begins, a doctor who specializes in radiation

therapy will talk with you and your child about treatment. The

doctor also will mark the exact area on your child where the radiation will be given. Marking ensures that the treatment is given in

the same place each time. These marks, or small tattoos, are not

painful to receive—the skin is only pricked—and they need to stay

40
in place all during treatment. Although the skin may become 

tender during radiation, it is important to avoid using any soaps

or lotions near the markings or the part of the body receiving the

radiation without the approval of the radiation team. Lotions are

often okay if removed hours before treatment.

Because you would be exposed to radiation, you will not be

allowed to stay in the room with your child during the treatment.

Your child will not be radioactive during or after radiation therapy,

so no one need fear being close to your child.

What Will Happen During Radiation Therapy?

Radiation therapy does not cause pain. It is much like having a

regular x-ray taken, except that your child needs to hold still

longer. Because some young children are often unable to be still,

the doctor may give a young child medicine to help him or her

relax or to put him or her to sleep. The parts of your child’s body

that are not being treated will be covered by special shields made

of lead to protect those body parts from the radiation.

Lessening Your Child’s Fears

Some children may find the machines scary. Most radiation

departments will give you and your child a tour of the area before

the first treatment, so both of you can see what the machines look

like. Younger children may be afraid of being left alone in the

room. You can tell your child that you will be right outside. In

some hospitals, you may be able to see your child receive treatment through closed-circuit television or viewing windows; your

child may feel better just knowing that you are watching.

Side Effects of Radiation Therapy

The high doses of radiation that kill cancer cells can also hurt

normal cells. When this happens, side effects occur. With radiation therapy, the side effects depend on the treatment dose and

the part of the body being treated.

The following chart gives information on the most common

side effects of radiation therapy. 

41
42

Side Effects of Radiation Therapy

Side Effect What May Help

ALL RADIATION SITES

Tiredness/

fatigue

Redness, 

blistering of

skin

Hair loss 

(occurs only in

the area being

treated)

Make sure your child gets extra sleep and rest.

• Leave the irritated skin open to the air.

• Clean your child’s skin as directed.

• Use ointments only if the doctors approve.

• Keep your child out of the sun as much as

possible.

• Use at least an SPF 30 sun-blocking lotion.

• Your child’s hair should grow back within

weeks to 3 months after treatment ends,

but some areas receiving higher doses may

not grow back.

• Use a mild shampoo.

• Cut your child’s hair short.

• Avoid hair dryers and electric curlers.

• Protect your child’s scalp from cold and

sun.

• Use a wide-tooth comb.

• If you plan to have your child wear a wig,

select it before all your child’s hair comes

out.

• If you want to cover your child’s head, try

different hats and scarves.

• Ask your child’s doctor for medicine
43

Side Effects of Radiation Therapy (continued)

Side Effect What May Help

HEAD AND NECK RADIATION SITES

Sore mouth 

Dry mouth

(sprays, mouthwashes, and lozenges) for

your child’s mouth.

• Give your child a sponge toothbrush or

cotton swab to brush his or her teeth.

• Have your child rinse his or her mouth

every 2–3 hours and after meals using 

baking soda solution or water.

• Avoid mouthwashes that have a high alcohol content, which may irritate mouth sores.

• Avoid serving very cold, hot, spicy, or

acidic foods.

• Try serving soft foods.

• Contact the doctor if your child has mouth

sores, painful areas, or patches of red or

white in the mouth.

• Drink plenty of water.

• Suck on sugar-free hard candy or ice pops,

or chew sugar-free gum.

• Rinse with a mouthwash recommended by

the doctor.

• Serve foods with sauces, gravies, and salad

dressings to make them moist and easier to

swallow.

• Drink liquids with meals.
44

Side Effects of Radiation Therapy (continued)

Side Effect What May Help

STOMACH AND ABDOMEN RADIATION SITES

Nausea and

vomiting

• Ask your child’s doctor about medicines to

control nausea and vomiting and/or sedatives to help your child sleep through the

nausea.

• Feed your child light foods 3–4 hours

before treatment.

• Encourage your child to eat small amounts

of food often and slowly.

• Avoid serving sweet, greasy, and spicy

foods and foods with strong odors.

• Serve your child cold meals, such as sandwiches, instead of hot foods.

• Encourage your child to take liquids first,

and then wait 30–60 minutes before eating

solids. Most children tolerate liquids better

than solids. 

• Have your child rest after meals.

• If your child is vomiting, do not give anything to eat or drink until it is under control. Once the vomiting is under control,

give small amounts of clear liquids (for

example, water, broth, milk-free ices, and

gelatin desserts). Begin with 1 teaspoon

every 10 minutes; gradually increase the

amount to 1 tablespoon every 20 minutes;

and finally, try 2 tablespoonfuls every 30

minutes. When your child can keep down

clear liquids, try denser liquids (for example, strained cereal, pudding, yogurt, milkshakes, cream soups). Give small amounts

as often as your child can keep them

down. Gradually work up to solid foods.
Long-term Side Effects of Radiation Therapy

Radiation therapy also may affect your child in the future. For

example, radiation to the brain may cause learning and coordination problems, especially in very young children. Thus, it may be

helpful to consider neuropsychological testing following treatment. Radiation therapy may also affect your child’s growth or

may cause a second cancer to form in the treated area years after

treatment. Therefore, the doctor may delay radiation therapy or, if

possible, choose another treatment, such as chemotherapy. Your

child’s treatment team has no way to know exactly what, if any,

long-term effects your child may have, but they can help you

know what the possible effects might be.

45

Side Effects of Radiation Therapy (continued)

Side Effect What May Help

STOMACH AND ABDOMEN RADIATION SITES (continued)

Diarrhea • Contact your doctor if your child’s diarrhea

is severe, that is, more than three loose

stools per day.

• Avoid giving your child apple juice.

• Avoid giving your child fatty foods.

• Try foods high in proteins and calories but

low in fiber, such as plain or vanilla yogurt,

rice with broth, or noodles.

• Serve your child foods and liquids high in

sodium and potassium. Foods high in

potassium that do not cause diarrhea are

bananas, peach and apricot juices, and

boiled or mashed potatoes.

• Make sure your child drinks plenty of 

liquids.
Immunotherapy

The immune system—the body’s system for defending itself—

knows when substances that should not be there, such as bacteria

and viruses, are in the body and then attacks them. The system

also knows when cells have changed, such as when cells become

cancerous, and then attacks them. Immunotherapy, also known

as biological therapy, was developed to take advantage of the

body’s own ability to fight disease. 

In immunotherapy, substances called biological response

modifiers (BRMs) are given to cancer patients. BRMs are substances that are normally made by the body to fight cancer and

other diseases. Scientists can make large amounts of BRMs to use

in cancer treatment. These BRMs destroy cancer cells and change

the way the body reacts to a tumor. They may also help the body

replace noncancerous cells destroyed by chemotherapy.

Several types of BRMs are used to treat cancer. Four are discussed here: cytokines, interleukins, colony-stimulating factors,

and monoclonal antibodies.

■ Cytokines are proteins formed in small amounts by all

human cells to help control the working of cells.

Interferon, one type of cytokine, helps the immune system

slow the rate of growth and division of cancer cells, causing

them to become sluggish and die. In children who have

cancer, these agents have been tested against leukemia,

osteosarcoma, brain tumors, and neuroblastoma.

■ Interleukins, another type of cytokine, are made by lymphocytes. Interleukin-2, one of the most studied interleukins, causes certain kinds of white blood cells to grow

and destroy tumors.

■ Colony-stimulating factors are proteins that cause bone

marrow cells to develop platelets, red blood cells, and white

blood cells.

46
■ Monoclonal antibodies recognize specific antigens,

substances that the body senses do not belong or regards as

“outsiders,” on the surface of cancer cells. These antibodies

can be directed against a certain cell type. They can be used

to attack and damage or destroy cancer cells. They may also

be used to deliver anticancer drugs or radiation directly to

specific cancer cells. This technique is still being developed

and is used only in clinical trials.

47
Side Effects of Immunotherapy

Depending on the exact type of treatment, immunotherapy

often causes flu-like symptoms such as chills, fever, muscle aches,

weakness, loss of appetite, nausea, vomiting, diarrhea, and, at

times, a rash. Sometimes the patient will bleed or bruise easily.

Depending on how serious these problems are, hospitalization

may be needed during treatment. These side effects usually go

away after treatment ends. Ask your child’s doctor about coping

with the side effects.

Bone Marrow and Peripheral Blood Stem Cell Transplants

Some children who have leukemia or other types of cancer

may need a bone marrow transplant (BMT) or a peripheral blood

stem cell transplant (PBSCT). In these treatments, the blood cells

in the diseased or damaged bone marrow—the spongy material

that fills the inside of bones and makes blood cells—are replaced

with healthy cells (stem cells), which will grow new healthy cells. 

Stem cells are immature cells that produce the three types of

blood cells: 

■ white blood cells, which fight infection

■ red blood cells, which carry oxygen to and remove waste

products from organs and tissues

■ platelets, which enable the blood to clot.

Most stem cells are found in the bone marrow, but some—

called peripheral blood stem cells (PBSCs)—are collected from 

the bloodstream. Umbilical cord blood also contains stem cells. 

If your doctor proposes a stem cell transplant for your child, the

stem cells may come from a donor’s bone marrow, bloodstream, 

or umbilical cord blood or from your child’s own bone marrow 

or bloodstream.

Healthy stem cells grow in two ways:

■ They divide to form more stem cells.

■ They mature into white cells, red cells, and platelets.

48
When transplanted into a cancer patient, stem cells can rescue

the damaged blood-forming system.

Two circumstances create the need for a transplant. The first 

is when the cancer itself has injured the bone marrow. BMT and

PBSCT are commonly used in the treatment of leukemia and 

lymphoma. The second circumstance is when a treatment requires

such large doses of chemotherapy or radiation therapy that the

child’s bone marrow is damaged during treatment. Chemotherapy

and radiation therapy target all cells that divide rapidly. Cancer cells

divide more rapidly than most healthy cells and so are destroyed by

the therapies. Bone marrow cells, however, also divide more rapidly

than other healthy cells, so high-dosage treatment can have a damaging effect on them as well. 

A BMT or PBSCT can be done in three ways: as an autologous

transplant, an allogeneic transplant, or a syngeneic transplant.

■ Autologous transplant—The child’s own stem cells or

PBSCs cells are used. They can be obtained from the bone

marrow or from blood, using the apheresis procedure. Stem

cells are collected while the child is in remission (when the

signs and symptoms of cancer have disappeared). To make

sure that any cancer cells that remain are destroyed, the

marrow may be treated with anticancer drugs. After the

marrow or PBSCs are collected, the child receives high-dose

chemotherapy, usually over 2 to 6 days, and, frequently,

total body irradiation, during which the whole body is 

radiated, in one dose or in many doses over several days, 

to get rid of the cancer. The collected marrow or PBSCs 

are then returned to the child through a vein, as in a 

blood transfusion.

■ Allogeneic transplant—The marrow or PBSCs from a 

sibling, parent, or someone not related to the child are

used for the transplant. The transplant material must be as

closely matched to the patient’s blood cells as possible.

Cord blood transplant is allogeneic. 

■ Syngeneic transplant—The perfectly matched marrow or

PBSCs from an identical twin are used for the transplant. 

49
Before the transplant, a catheter is usually inserted into a large

vein in the chest for transplanting the marrow or PBSCs, as well as

for giving blood, antibiotics, and other drugs and for drawing

blood. The child is given high doses of anticancer drugs and/or

radiation. When the cancer cells—along with some healthy bone

marrow cells—are destroyed, the new, healthy marrow or PBSCs

can be given. The healthy marrow or PBSCs are given through the

catheter and travel through the bloodstream to the bone marrow

where they start to make red and white blood cells and platelets.

It usually takes 14 to 30 days after the transplant for the transplanted stem cells to make enough white blood cells to fight infection and to make other blood cells. During this time, your child

will be at higher risk for infections, anemia, and bleeding.

Complete recovery of your child’s immune system can take 1 to 2

years after an autologous, allogeneic, or syngeneic transplant. Your

child may need to remain in a hospital room that is kept as free as

possible from anything that may cause an infection. Supportive

care, which includes receiving blood transfusions and antibiotics,

will be given.

Supportive Care

Children having a BMT or PBSCT usually stay in the hospital for

1 to 2 months (sometimes longer), although outpatient BMT can be

done for children who have brain tumors. Children receiving BMT

or PBSCT may need supportive care. 

For more information on side effects from chemotherapy and

radiation therapy, see the charts in those sections.

Graft-Versus-Host Disease

Graft-versus-host disease (GVHD) may occur in patients who

receive bone marrow or peripheral stem cells from a donor. In

GVHD, donated stem cells realize they are in a different body, so

they may attack the patient’s tissues, such as the liver, skin, or

digestive tract. GVHD can be mild or very severe and can occur

any time after the transplant—even years later. The doctor may

give drugs to reduce the risk of GVHD and to treat the problem if

it occurs.

50
What about Complementary and Alternative Medicine?

Complementary and alternative medicine (CAM) includes a

broad range of healing philosophies, approaches, and therapies. 

A therapy is generally called complementary when it is used in

addition to conventional treatments; it is often called alternative

when it is used instead of conventional treatment. (Conventional

treatments are those that are widely accepted and practiced by the

mainstream medical community.)

It is important that the same scientific evaluation used to

assess conventional treatments be used to evaluate complementary

and alternative therapies. Conventional cancer treatments have

generally been studied for safety and effectiveness through clinical

trials, which are research studies with people. Some complementary and alternative therapies have not been studied in clinical trials.

51

Supportive Care for BMT and PBSCT

Problem Supportive Care Provided

• Isolation from people with infectious diseases

• Transfusion with blood products, including

platelets and red blood cells

• Treatment with proteins that increase the

number of white blood cells

• Intravenous antibiotics

• Isolation from other people

• Low-bacteria diet

• Mouth care

• Liquid antibiotics

Intravenous nutrition—giving nutrients through

a vein

Low counts of

all types of

blood cells

Infections

Gastrointestinal

infections

Difficulty 

eating

enough food
Others, which once were not accepted by the mainstream medical

community, are gaining acceptance in cancer therapy—not as

cures, but as complementary therapies that may help patients feel

better and recover faster. One example is acupuncture. Other 

therapies, such as laetrile, have been studied and found to be 

ineffective and potentially harmful.

If you have questions about complementary or alternative therapies, discuss them with your child’s doctor or treatment team.

52

Questions to Ask Your Child’s Health Care Provider

About Complementary and Alternative Therapies—

■ What benefits can be expected from this therapy?

■ What are the risks associated with this therapy?

■ Do the known benefits outweigh the risks?

■ What side effects can be expected?

■ Will the therapy interfere with conventional treatment?

■ Is this therapy part of a clinical trial? If so, who is sponsoring

the trial?

■ Will the therapy be covered by health insurance?
What about Hospitalization?

Being in the hospital is often scary for any child, especially at

first. It is a whole new world to learn about—new people and

strange machines, procedures, and routines. Adding a touch of

home by having pictures of family members and friends, drawings,

and other personal things in your child’s room can help make the

hospital a less scary place. These homey touches can help start a

conversation between the hospital staff and your child.

One of the scariest things for many children is being separated

from their parents and siblings. Many hospitals and treatment

centers help your family and your child spend as much time

together as possible by allowing you to visit anytime and having

beds for parents in the child’s room or bedrooms nearby. If the

hospital does not have beds for you, you might ask to sleep in a

chair near your child’s bed.

Most hospitals have playrooms for children who are patients.

Playrooms often have toys, games, arts and crafts supplies, and

tape players, giving children a chance to play and talk with each

other in much the same way that they do with their friends at

home or in school. The playroom setting allows children to relax

and become more comfortable in the hospital. Playroom staff,

trained in working with children who have serious illnesses, can

talk to parents and other members of the treatment team about

the fears or concerns a child may share through play.

If your child cannot get out of bed to go to the playroom,

child-life workers—trained staff who help coordinate play, schoolwork, and other activities for the child—may make bedside visits.

For older children who are trying to separate themselves from

you and be more on their own, being in the hospital may thwart

their drive for independence. At a time when young people are

normally doing more on their own, cancer makes them rely on

you more. As a result, adolescents may make it known, loudly and

often, that they are unhappy. They may refuse treatment, break

hospital rules, miss outpatient appointments, and rebel in other

ways.

53
Children of any age will often cooperate more if given treatment choices that do not cause problems with their care. Parents

can help children become more independent by allowing them to

share the responsibility for their care. Some hospitals also make a

special effort to help children cope with illness and being in the

hospital, such as allowing teenagers to dress in street clothes

whenever possible and to have friends visit. Some hospitals 

have equipment that allows the child to interact with his or 

her classmates in their classroom.

54
What Are the Common

Medical Procedures?

Medical tests and procedures are not only used to diagnose

cancer, but also to see how well the treatment is working and to

make sure that the treatment is causing as little damage to normal

cells as possible. Many of these tests will be repeated from time to

time throughout treatment.

Parents and children say that knowing about the tests before

they are done helps them to cope. You may want to ask your doctor these questions before any testing is done:

■ Which tests will my child have? What will my child need

to have this test? An IV? An oral contrast?

■ Where and how is each test done?

■ Will the tests be painful? If so, what can be done to make

my child more relaxed and in less pain?

■ Who will do the tests? Has the staff doing the testing

worked with children?

■ What information does the doctor expect to get from the

tests?

■ How soon will the results be known? What do the results

mean?

■ Will the tests be covered by insurance?

Some of these tests are painful; most are not. For some tests,

your child may need to remain still for as long as an hour. Ask

your doctor what you and the treatment team can do to help your

child become more comfortable during the tests. For procedures

that require your child to remain very still, medicines can be given

to help your child relax or become sleepy. For tests that can be

55
painful, such as the bone marrow aspiration test and spinal tap,

pain medicines are often given. Sometimes a general anesthetic, a

drug that causes your child to lose consciousness and all feeling, is

given.

Relaxation therapy (methods used to make one feel more

relaxed and to feel less pain), guided imagery (using the imagination to create mental pictures), hypnosis (a trance-like state that

can be brought on by a person trained in a special technique),

music, and other techniques can also help to ease your child’s discomfort and fear. When your child is relaxed, the procedures are

less painful. Ask your treatment team to help you guide your child

through relaxation exercises both before and during the procedures. Often a combination of pain medicine and relaxation techniques is used.

Your child will want to be with you during the procedures, and

in most situations, that is possible. See the chapter “What Are

Some Common Health Issues?” (page 63) for detailed information

on pain control and relaxation. The following chart provides 

information about some common medical procedures your child

may have.

56
General

Bone marrow 

aspiration or

bone marrow

biopsy

Tumor markers

57

Common Medical Procedures and Tests

Procedure/Test Purpose What is Done

BIOPSY

A biopsy determines if a

tumor is not cancerous

(benign) or cancerous

(malignant). If the 

biopsy is “positive,”

cancer is present. If it is

“negative,” cancer cells

were not seen.

This type of biopsy 

examines the bone

marrow under a microscope to see if leukemia

is present or if the treatment is working. For

other cancers, this test

tells whether the disease has spread to the

bone marrow.

This type of test searches 

for substances that may

increase in the blood of a

person with cancer. It

can help to diagnose

cancer and to find out

how well the child is

responding to treatment.

BLOOD STUDIES

A doctor removes part or

all of the tumor or part

of the bone marrow. A

pathologist, a doctor

who specializes in recognizing changes caused

by disease in humans,

looks at the tissue under

a microscope.

For young people, a

bone marrow test is

most often done in the

hip bone. The child lies

on his or her stomach

with a pillow under the

hips. A needle is put

through the skin and

into the middle of the

hipbone, and a small

sample of marrow is

quickly drawn into the

syringe. The most painful

part of the test lasts for a

few seconds.

A sample of blood is 

usually obtained through

a needle inserted in a vein

or by pricking the tip of

the finger and squeezing

out a few drops of blood.

Sometimes blood is

obtained via tubes
58

Common Medical Procedures and Tests (continued)

Procedure/Test Purpose What is Done

BLOOD STUDIES (continued)

Tumor markers

(continued)

Complete blood 

count (CBC)

White blood cell 

(WBC) count

Hemoglobin

A CBC test checks the 

white blood cells, hemoglobin, hematocrit, and

platelet count in a sample of blood.

A WBC count measures

the number of WBCs in

the blood and is also

used to find certain types

of immature cells—

called blast cells—typical

of leukemia. WBCs protect the body from infection. Chemotherapy and

other treatments can

lower the number of

WBCs, increasing the risk

of infection. If the test

reveals a low WBC

count, treatment may

need to be delayed until

the count goes up.

Hemoglobin is the substance in red blood cells

that carries oxygen to

the body’s tissues. Low

(catheters) that have been

surgically placed through

the chest and into one of

the major blood vessels

leading to the heart.

See above.

See above.

See above.
59

Common Medical Procedures and Tests (continued)

Procedure/Test Purpose What is Done

BLOOD STUDIES (continued)

Hemoglobin

(continued)

Hematocrit

Neutrophils 

(also called 

ANC-absolute

neutrophil

count)

Platelet count

hemoglobin indicates

anemia. Anemia can

cause your child to look

pale and feel weak and

tired. It may be a side

effect of chemotherapy

or a sign that the cancer

has returned.

Hematocrit determines

the size, function, and

number of red blood

cells. A low hematocrit

also may mean that

anemia is present.

This blood study tests

for the body’s ability to

fight bacterial 

infections.

This test measures the 

number of platelets.

Platelets help the blood

clot. A low platelet

count, which may be

due to side effects of

medicine or to infection, or may mean that

leukemia is present,

could cause one to

bleed or bruise easily.

See above.

See above.

See above.
The child, in a curled

position, lies on one side

or sits. A needle is inserted between the small

bones of the spine into

the fluid space around

the spinal cord. A sample

of the spinal fluid is

taken. This test can be

somewhat painful. 

Tests are generally not 

painful, but the equipment may be frightening

to children. Some

machines, such as MRIs,

make very loud noises.

A special dye is injected

into an artery and travels

through the blood vessels. Then a series of xrays is taken. The dye

makes the blood vessels

show up on an x-ray.

60

Common Medical Procedures and Tests (continued)

Procedure/Test Purpose What is Done

LUMBAR PUNCTURE

Lumbar 

puncture

or spinal tap

General

Angiogram

This test obtains a sample of spinal fluid—the

liquid that surrounds

the brain and spinal

cord. The doctor looks

at the fluid under the

microscope to see if any

infection or cancer cells

are present. It is also

used to give anticancer

drugs directly to the

brain and spinal cord.

Imaging tests take pictures or images of areas

inside the body to see

what is happening.

An angiogram obtains 

an x-ray of the blood

vessels and shows

changes in the blood

vessels and in nearby

organs. Clogged blood

vessels or blood vessels

that have moved may

mean that a tumor is

present.

IMAGING TESTS
61

Common Medical Procedures and Tests (continued)

Procedure/Test Purpose What is Done

IMAGING TESTS (continued)

Ultrasound

Radioisotope 

scanning

Ultrasound obtains a

picture of part of the

body by using sound

waves. The waves echo

or bounce off tissues

and organs, making

pictures called sonograms. Tumors have 

different echoes than

normal tissues, making

it possible to “see”

abnormal growths.

This test studies the

liver, brain, bones, kidneys, and other organs

of the body.

A small hand-held device

called a transducer is

used to send the sound

waves to a site in the

body. The transducer is

rubbed firmly back and

forth over the site after

the skin has been lubricated with a special gel.

The child either swallows 

or has an injection of a

mild, radioactive material

that is not harmful. After

a short wait, a scanning

device is passed over the

body to detect where

the radioactive material

collects in the body and

allows the doctor to

locate tumors. Your child

will not be radioactive

during or after these

tests. 
62

Common Medical Procedures and Tests (continued)

Procedure/Test Purpose What is Done

IMAGING TESTS (continued)

CT scan

(computerized

tomography

scan) or 

CAT scan

MRI 

(magnetic 

resonance 

imaging)

This test obtains a

three-dimensional picture of organs and tissues; ordinary x-rays

give a two-dimensional

view. Using pencil-like

x-ray beams to scan

parts of the body, a 

CT also gives better 

pictures of soft tissues

than does an x-ray. It

provides precise and

very useful details about

the location, size, and

type of tumor.

An MRI creates pictures 

of areas inside the body

that cannot be seen

using other imaging

methods. MRI uses a

strong magnet linked to

a computer. Because an

MRI can see through

the bone, it can provide

clearer pictures of

tumors located near the

bone.

While the child lies still, a

large machine moves

back and forth, taking

pictures. 

The scan takes 30–90

minutes. Sometimes a

special dye is injected

into a vein before the

scan.

If your child has a central

venous line in the chest,

it generally cannot be

used during a CT scan of

the chest. It is important

to prepare your child for

an IV in the hand.

The child lies on a flat

surface, which is pushed

into a long, round chamber. Your child will hear a

loud thumping noise,

followed by other rhythmic beats. The test takes

15–90 minutes, during

which your child must 

lie still.

Sometimes a special dye

is injected into a vein

before the test.
What Are Some Common

Health Issues?

Pain relief, nutrition, treatment for infections, immunizations,

bleeding, transfusions, and dental/mouth care are all part of 

supportive care. The goal of supportive care is to prevent or lessen

the side effects of the treatment and the disease. With this care,

your child can receive the needed therapy with greater safety and

comfort. You may want to talk with your child’s doctor or other

members of the treatment team to see how the information 

provided below might help your child.

Pain

Your child may have pain for a variety of reasons. Pain may be

caused by the cancer itself, or it could be from the treatment, such

as surgery to remove a tumor or side effects of chemotherapy.

Sometimes, cancer patients have pain that has nothing to do with

the cancer, such as a toothache or a headache.

■ Not all children with cancer have pain. Those who do are 

not in pain all of the time.

■ Medicine and other treatments can almost always relieve 

cancer pain.

■ Relieving pain will not only make your child more comfortable, but also may help your child sleep and eat better.

■ Parents often feel helpless when their children are in pain.

This reaction is natural. Knowing what to expect and what

can be done to relieve pain can help. Talk with the doctor

and treatment team about whether your child is likely to

have pain, what pain treatment your child can receive, or

what to do for your child if pain occurs.

63
How Is Pain Managed?

The best way to relieve pain is to treat its cause. If a tumor is

causing pain, the doctor may try to remove the tumor or decrease

its size using surgery, radiation therapy, and/or chemotherapy.

Other ways to relieve or control pain include use of:

■ direct pressure or cold or warm compresses

■ pain medications

■ physical therapy (the health profession that treats pain in

muscles, nerves, joints, and bones with exercise, electrical

stimulation, hydrotherapy, and the use of massage, heat,

cold, and electrical devices)

■ relaxation

■ distraction (turning your child’s attention to something

other than the pain)

■ imagery (using your child’s imagination to create mental

pictures or situations). Most cancer centers have a psychosocial team that can help you learn, or help your child

learn, the techniques of relaxation, distraction, and

imagery

■ nerve blocks (a method in which medicine is injected into

or around the nerve to numb or deaden the nerve fibers).

Preventing pain from starting or getting worse is the best way

to control it. Some people call this “staying on top of the pain.” It

may also mean that your child will need a lower dose of a pain

reliever than if you wait until the pain gets bad. Different pain

medicines take different lengths of time to work, from a few minutes to several hours. If your child waits too long to take pain

medicine, the pain may get worse before the medicine helps.

To treat your child’s pain, the doctor may start with medicines

such as acetaminophen. If the pain increases, stronger drugs that

require a prescription may be needed. Sometimes, opioids (also

known as narcotics) are prescribed. Narcotics are the strongest

pain relievers available. Studies show that taking narcotics to

64
relieve cancer pain will not make your child addicted to drugs.

When your child is taking opioids, talk to the doctor, nurse, or

pharmacist before giving him or her any other medications.

Work closely with the treatment team in sharing information

about your child. For example, if you know that your child is

afraid of needles, ask the doctor if your child can be given oral

medicine. In older children and adolescents, the doctor may order

a self-controlled drug “pump.” This method uses a portable computerized pump containing pain medicine attached to a needle

that is placed in a vein or attached to the central vein catheter.

When pain relief is needed, the child presses a hand-held button,

and the pump injects a preset dose of medicine into the vein.

Pumps are programmed to give preset doses only at preset intervals, so even if the child presses button more than once during the

preset interval, he or she will not get any more pain medication

than is programmed. 

How Will I Know How Bad My Child’s Pain Is?

Treating pain in children requires a special understanding

of the child and of the child’s age. In some cases, you may need to

speak for your child, especially if your child is younger than 4

years old. For infants and very young children, you can be of great

help by closely watching the expressions on your child’s face and

carefully listening to the way your child cries. Take note of

changes in behavior, such as sadness or isolation or decreased

activity. The changes may mean that your child is in pain.

Sometimes, children have pain, but they may not be able to tell

you about it. They may be afraid to. It is important to ask if your

child has pain. Talk with your child about where and how much

pain there is. Use words that your child knows, such as “boo-boo”

or “ouch.” A good way to determine the amount of pain your child

has is to use a pain scale. A frequently used pain scale is the WongBaker FACES Pain Rating Scale, which can be used with children as

young as 3 years old. On this scale, each face demonstrates a level

of pain, from a person who feels happy because there is no pain

(hurt) or sad because there is some or a lot of pain. Face 0 is very

happy because there is no hurt. Face 1 hurts just a little bit. Face 2

65
hurts a little more. Face 3 hurts even more. Face 4 hurts a whole

lot, but Face 5 hurts as much as you can imagine, although you do

not have to be crying to feel this bad. Ask your child to choose the

face that best describes the pain. Report the number under the 

chosen face to your child’s nurse and doctor.

From Wong, D.L., Hockenberry-Eaton, M., Wilson, D., Winkelstein, M.L., Ahmann, E.,

DiVito-Thomas, P.A.: Whaley and Wong's Nursing Care of Infants and Children, ed. 6, 

St. Louis, 1999, p. 2040. Copyrighted by Mosby, Inc. Reprinted by permission.

What If the Pain Is Not Being Controlled?

Cancer pain almost always can be greatly lessened or relieved,

but no doctor can know everything about all medical problems. If

your child’s doctor is unable to control your child’s pain, ask to see

a pain specialist. Pain specialists may be oncologists, anesthesiologists, neurosurgeons, other doctors, nurses, or pharmacists. A pain

control team may also include psychologists and social workers.

For more information about pain control, you and your child’s

treatment team may find these NCI booklets helpful: 

■ Pain Control: A Guide for People With Cancer and Their

Families (available from both NCI’s Cancer Information

Service [CIS] and the American Cancer Society) 

■ Get Relief From Cancer Pain

■ Understanding Cancer Pain

You can receive copies from the CIS by calling 1-800-4-CANCER 

(1-800-422-6237) or TTY at 1-800-332-8615. Also, many NCI 

publications may be viewed or ordered on the Internet at

http://cancer.gov/publications.

66

0

NO

HURT

1

HURTS

A LITTLE BIT

2

HURTS

A LITTLE MORE

3

HURTS

EVEN MORE

4

HURTS

A WHOLE LOT

5

HURTS

WORST
Diet

Many side effects from cancer treatment may make it hard for

your child to eat. Some physical side effects include loss of

appetite, sore mouth, changed sense of taste, nausea, vomiting,

diarrhea, constipation, and weight gain. The emotional side of

cancer treatment may also affect your child’s eating habits. When

children are upset, worried, or afraid, they may have eating problems. Losing his or her appetite and feeling nauseated can be normal when your child is nervous or afraid. The treatment team,

including the nutritionist/dietitian at the hospital where your

child receives treatment, can help you plan the food to serve at

home. Let the team know if you notice that your child is losing or

gaining weight. Ask what has worked for other children. The good

news is that even children who have trouble eating have days

when eating is a pleasure. The following suggestions may help

your child feel more like eating:

Serve appealing food.

■ Build meals around your child’s favorite foods, but do not

force favorite foods during nausea attacks. Forcing may

cause a lasting dislike of the food.

■ Try always to give high-calorie foods (for example, 

macaroni and cheese with real butter and cheese, or milkshakes made with ice cream). Add instant breakfast 

powders to all milk and milk products. 

Adopt a casual attitude about mealtimes.

■ Let your child eat whenever he or she is hungry or offer

food often during the day. Have high-calorie, high-protein

snacks handy. Taking just a few bites of the right foods or

sips of the right liquids every hour or so can help increase

your child’s intake of proteins and calories. You can freeze

portions of a favorite dish and serve them when your child

wants them.

■ Oral medicines may affect your child’s appetite. Some are

best given in the morning, some at midday, and some on a

67
full stomach. Ask the doctor when and how medicines

should be given. Tell the doctor if your child has no

appetite or has any other side effects.

■ Try changing the time, place, and surroundings of meals. A

picnic, even if it is in the house, can make mealtime more

fun. Watching a favorite TV show or inviting a special

friend to join your child at meal- or snacktime also can

help your child feel more like eating.

Create a pleasant setting.

■ Make mealtimes calm and relaxed. Do not hurry meals.

■ Praise good eating. Try using small rewards, such as a

favorite dessert or a new toy, to encourage good eating.

Siblings should be considered when setting up a reward system. It is important that siblings are not left out, but be

careful not to encourage healthy siblings to overeat. 

■ Avoid arguing, nagging, or punishing. Forcing a child to eat

may make things worse.

If your child’s eating becomes a serious problem, ask your

child’s doctor about medicines that can improve appetite.

Sometimes children gain extra weight during treatment

because of the buildup of excess water in the body. Do not put

your child on a diet. Instead, call the doctor. If the weight gain is

due to extra water, the doctor may recommend using less salt,

because salt causes the body to hold onto water. The doctor may

also order medicines called diuretics to get rid of the excess water.

Children who have cancer need diets high in both calories and

protein. High-calorie foods help prevent weight loss, and protein

foods help the body stay strong and repair itself. To get your child

to eat more protein and calories, try these tips.

■ Offer liquids during the day, but not at mealtimes. Liquids

are filling and take away an appetite for solid foods. Give

your child a straw to make drinking easier.

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■ Some types of chemotherapy may change your child’s sense

of taste for a while. Well-seasoned foods, such as spaghetti,

tacos, and pizza, may seem good at such times. Sometimes,

adding extra salt or sugar, or using less, may make foods

taste better.

■ Avoid empty-calorie foods, such as soft drinks, chips, and

candy, that can make your child’s appetite worse without

providing good nutrition. Milkshakes, yogurt, fruit, juices,

or “instant breakfasts” provide extra calories and protein.

You will also find many helpful suggestions in NCI’s booklet

Eating Hints for Cancer Patients, available from the CIS at 1-800-

4-CANCER (1-800-422-6237) or TTY at 1-800-332-8615. It is also

available on the NCI Web site at http://cancer.gov/publications.

Infections

Infections are common in children who have cancer, especially

in children who are receiving chemotherapy. Chemotherapy lowers the white blood cell count, which increases the chances of

infection. You should report any sign of infection, such as a fever,

to your child’s doctor right away.

Infections are usually caused by bacteria or viruses. To find 

the cause of your child’s infection, the doctor may take samples

(cultures) of the throat, blood, urine, or stool. If the infection is

from bacteria, your child will receive antibiotics. Antibiotics will

not work against viruses. Unless a virus has been identified, however, most children are treated with antibiotics until their blood

counts improve, even if bacterial infection cultures are negative.

Your child may receive other medicines to help ease the symptoms. If the infection is serious, or the white blood cell count is

very low, your child may need to be treated at the hospital. Your

child’s doctor may also stop the cancer treatment for a short time

until the infection is gone.

Some viral infections, such as chickenpox, can cause major

problems for a child receiving chemotherapy. Call the doctor right

away if your child is exposed to chickenpox or to anyone who has

recently received the chickenpox vaccine. And ask your child’s

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teachers to let you know if a schoolmate develops chickenpox.

Some families ask teachers to ask schoolmates’ families to call

them at once if chickenpox develops in their families.

Once children have had chickenpox, they usually do not get it

again, but some children on chemotherapy who have already had

chickenpox may develop shingles. Shingles is a blister-like skin

rash that looks like chickenpox. Instead of appearing all over the

body, however, shingles is in just one area. Call the doctor right

away if you think that your child may have shingles.

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Regular or red measles (also known as rubeola or 9-day

measles) may also be more serious for a child on chemotherapy. 

If your child comes into contact with this type of measles, you

should call the doctor. The doctor may give your child medicine

to prevent or control the infection.

Immunizations

Most vaccines, and especially live virus vaccines (regular

measles, German measles or rubella, mumps, polio, and chickenpox), should not be given to a child receiving cancer treatment,

although some doctors do recommend varicella (chickenpox) 

vaccines for children with cancer and for their siblings. Some

immunizations may be dangerous because chemotherapy cancer

treatment lowers the body’s ability to protect itself when given

these vaccines. In addition, brothers or sisters should not receive

the live polio vaccines while their sibling is having cancer treatment. You should discuss these matters in detail with both your

child’s oncologist and your children’s primary care provider (for

example, pediatrician, clinic, or family physician). 

Vaccines that are not live may be safe to give during cancer

treatment, including diphtheria, whooping cough, and tetanus

immunizations (DPT, DT, or IPV shots). Flu shots are okay, but you

should ask your child’s doctor before any immunizations are

given.

Bleeding

Platelets are blood cells that help the blood to clot. A low

platelet count may cause your child to bleed more easily than

usual. If your child’s platelet count is low, he or she will need to

avoid contact activities such as football, soccer, or skateboarding.

If bleeding occurs, you may try the following:

■ Apply pressure until the bleeding stops—a clean towel,

handkerchief, or cloth firmly pressed to the wound will

slow or stop the bleeding.

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■ For nosebleeds, have your child sit up; do not let your child

lie down. Pinch the bridge of the nose over the bone for 5

minutes. The pressure must be tight on both sides to stop

the bleeding.

If bleeding continues, call the doctor immediately.

Transfusions

Children who have cancer may need to receive whole blood or

blood components (such as red blood cells). This procedure is

called a transfusion. Packed red cells are often given to control

anemia—a condition in which the blood becomes low in red

blood cells or in hemoglobin. A platelet transfusion is given if the

platelet count is low. White cell transfusions are not routinely

given when white blood cell count is low. The doctor may, however, consider white cell transfusions when a child with a very low

white cell count has a very serious infection that is not responding

to antibiotics.

Each person has a certain type of blood. Each person can only

receive the blood of the same type or from the universal donor

type “O.” 

Dental/Mouth Care

If possible, your child should have a complete oral exam and

any needed dental work before cancer treatment begins. Dental

care is important during treatment, but even checkups should be

avoided when blood counts are low. Always check with the doctor

before starting any dental work, and let the dentist know your

child is receiving cancer treatment. Your child may need to take

an antibiotic before any dental work is done to prevent possible

infections. In general, a low dose of amoxicillin is given before

even a routine cleaning to patients who have a central venous

catheter. 

Keeping the child’s teeth, mouth, and gums clean to protect

against decay is especially important. Make sure your child’s teeth

are brushed after each meal, using a soft toothbrush. After each use,

72
rinse the brush well with cold water, shake it well, and allow it to

dry. Give your child paper cups to rinse his or her mouth. Dental

floss may be used if care is taken not to cut or irritate the gums.

Mouth Care During Radiation Therapy

During radiation to the head and neck, less saliva is produced,

so the mouth becomes dry. This dryness can lead to tooth decay.

The doctor or dentist may recommend using a fluoride mouth

rinse or order a fluoride gel. Check with your doctor before buying

a mouthwash—many can cause burning pain in a child with a

sore mouth. All children receiving radiation should rinse their

mouths often during the day. One suggested mouth rinse is a mixture of salt and baking soda (1/2 teaspoon of each in a cup of

water). To care for infants and toddlers, wrap a soft cloth around

your finger and gently wipe the teeth and gums with the mouth

rinse. Soft “toothettes” can also be used to apply the rinse to the

child’s mouth.

Mouth Care When Blood Counts Are Low

When your child’s blood counts are low, mouth care needs 

to be especially gentle; your child can get an infection or start

bleeding more easily. Use very soft bristle toothbrushes, cotton or 

glycerin swabs, or toothettes, and avoid using water jet devices or

dental floss. Call the doctor if you see any red or white patches,

mouth sores, or irritated areas in the mouth.

Mouth Care When Your Child Has Mouth Sores

When mouth sores, bleeding areas, or irritated areas occur, use

only the mouth rinse described above or one the doctor recommends. Your child should rinse the mouth out well after every

meal and before bedtime. Cotton or glycerin swabs or toothettes

(available in drug stores) can help remove pieces of food from the

mouth. If mouth sores become painful, a local anesthetic may

help. The doctor can order an anesthetic and will tell you how

often to use it. To make eating easier, put the anesthetic on the

sore gums before meals. For dry lips, try a lanolin lip ointment to

prevent them from cracking and becoming sore.

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When Should You 

Call the Doctor?

If you have worried about knowing when to call the doctor,

you are not alone. Parents want to watch closely for any sign that

their child may need to see the doctor but may not be sure what

those signs are. They also may worry about “bothering” the doctor

or treatment team. The best approach is to ask the doctor when to

call about any problems your child may be having. If you are

unsure, this list can be used as a guide for when to call the doctor.

74

Call the Doctor If...

Your child shows signs of infection.

■ Fever (100.4°F or 38°C) or other sign of infection, especially if your child’s white count is low. (The doctor will

tell you when it is low.) It is important to take your child’s

temperature with an accurate thermometer. 

Your child has trouble eating.

■ Mouth sores that keep your child from eating

■ Difficulty chewing 

Your child has digestive tract problems.

■ Vomiting, unless you have been told that your child may

vomit after the cancer treatment

■ Painful urination or bowel movements

■ Constipation that lasts more than 2 days

■ Diarrhea
You can find more information about these topics in this 

booklet under “What Are Some Common Health Issues?” 

(page 63).

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Your child shows changes in mobility or mood. 

■ Trouble walking or bending

■ Trouble talking

■ Dizziness 

■ Blurred or double vision

■ Depression or a sudden change in behavior

Your child has troublesome symptoms.

■ Bleeding, including nosebleeds, red or black bowel movements, pink, red, or brown urine, or many bruises

■ Severe or continuing headaches

■ Pain anywhere in the body

■ Red or swollen areas

Your child needs treatment for other health concerns.

■ Before your child receives immunizations or dental care,

even scheduled vaccinations or regular dental checkups

■ Before you give your child any over-the-counter medication

You are in any doubt whatsoever!
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How Do You Move on 

with Life?

One of the challenges facing the family of a child who has

cancer is going on with everyday life. Moving forward is not an

easy task. It may be hardest during times of stress: when you find

out your child has cancer, when your child is in the hospital, or

when your child is suffering from the side effects of treatment.

Even when the treatments are going well, the cancer still

affects each member of your family. When your child enters the

hospital or goes for treatments, each member has to adjust in

some way. Family members may be apart. Days of work may be

missed. Brothers and sisters may feel left out. Everyone may be

worried and tense.

Despite all this, family life goes on. Brothers and sisters have

school and activities. Parents have jobs. It is hard to keep up with

everyday activities and responsibilities while being with and caring for your child with cancer.

As the mother or father of a child who has cancer, remember

that you are not alone. You can get help from many sources, such

as the treatment team, which includes a social worker who can

help you in dealing with your child’s illness; other parents of children with cancer; support groups; or others. (You can find more

information about resources on page 92.) The information below

may also be helpful for you, your child, the other children in your 

family, your extended family, and friends.

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Life Goes On

Your Child

Even with a diagnosis of cancer, your child still has the same

needs as other young people—going to school, having friends, and

enjoying things that were a part of life before cancer. You can help

meet these needs by letting your child live as normal a life as possible. Some activities, however, may need to be changed at different

times during treatment. After chemotherapy or radiation therapy,

your child may be very tired and, therefore, need more rest. This

tiredness is to be expected. Help your child find other things to do,

such as new hobbies, or ask friends to come over to draw or paint.

School and Friends

Encourage your child to stay in touch with friends. Keeping

contact is easier if your child can continue to go to school while

being diagnosed and treated, but staying in school is not always

possible. If time off from school is needed, it is best for your child

to return to school as soon as possible. Children who have cancer

need and like to be with others their age, and keeping up with

schoolwork makes them feel good about themselves. Some cancer

centers offer back-to-school programs, which may help children

and classmates understand the diagnosis and know what to

expect. You may ask your doctor, nurse, or child-life specialist to

visit your child’s classroom. 

Children often worry about how their friends and classmates

will act toward them, especially if they have missed a lot of school

or return with obvious physical changes, such as hair loss or a

missing limb. Other students are usually accepting, but they may

have questions. Help your child to think of ways to answer their

questions and to tell friends and classmates that they cannot

“catch” the disease. Your treatment team has had experience helping families with school. Ask them to help your child. Ask your

nurse if the team or hospital has a school reentry program. Such

programs send nurses to the child’s classroom to talk about the

child’s cancer and treatment with classmates and teachers. 

Your child needs to know that many people, including children,

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are uneasy about a serious illness. These people may act differently

or say hurtful or wrong things to someone who has cancer.

You may want to talk with your child’s teachers and school

nurse about the disease, treatment, days missed, and any needed

changes in activity. You and your family, the doctor, or members

of the treatment team can explain your child’s medical condition

79

To help your child and his or her siblings deal with fears and

feelings, you may want to:

■ Say “I love you” often.

■ Assure your children that the cancer and its treatment are

not punishments.

■ Encourage your child or children to talk about the cancer

and cancer treatment. Ask your children questions to get

the conversation started. Family talks can help everyone

feel less worried. Talking helps the whole family cope with

the illness together.

■ Tell your children that is it okay to feel sad and cry.

■ Encourage activities to help your child feel more relaxed.

Drawing, playing with harmless medical supplies or puppets, and role-playing may help your child feel better.

In addition, setting limits for behavior and activities is still 

important and even comforting to your child. But it is helpful 

to remember that children, like adults, have good days and 

bad days. Help your child feel part of normal life.

■ Allow your child to make choices as long as they do not

cause problems with treatment.

■ Use the same rules and level of discipline as before the

cancer diagnosis and treatment.

■ Ask your child to continue doing regular chores around

the house, when able.
80

and answer questions. Teachers and other school staff may want

to use this information to talk with the other students about what

to expect when your child returns to school.

If your child cannot return to school right away, a home tutor

may be available through the school system to help your child

keep up with studies, making it easier to return to school.
81

Supporting Your Child

Like you, your child is likely to feel uncertain, worried, and

afraid at times, but he or she may find it hard to talk about these

fears and may behave differently than usual. For example, your

child may become loud or bossy, be quieter than usual, have

nightmares, have changes in eating habits, not do as well in

school, or go back to earlier behaviors such as bedwetting or

thumbsucking.

These common behavior changes are just a few of the ones you

may see. You may want to talk about such changes with the doctor, nurse, social worker, teachers, and school counselor, who have

had experiences like yours.

Teenagers who have cancer have special concerns. They frequently complain that their parents try to protect them too much.

Teenagers are at a stage in their lives when they are naturally trying to be their own bosses and do things for themselves, but having cancer forces them to depend on you. Giving teenagers a

chance to make their own decisions and choices, when possible,

will help.

You

Your child’s illness will bring many changes to your life. To

help you cope with these changes, you may want to consider the

following suggestions:

■ Make time for yourself. Try to do some of the things you

did before your child got sick. Do not feel guilty that you

need some time for yourself. Also, make a special effort to

find private times to talk with your partner or those who

are close to you. Do not let all your talk be about your

child with cancer.

■ Prepare yourself for a lot of waiting. Find ways to make

waiting during clinic visits or while in the hospital less

frustrating. Take something to read or do while your child

is asleep or does not need your attention.
■ Turn to treatment staff or other resources for support.

Treatment centers have trained staff who can talk with you

about your concerns. Make use of these people for support.

■ Contact support groups. Your treatment center can provide names of support groups at which you can meet with

other parents of children who have cancer. Community

resources can provide support and information. They can

tell you how other parents have dealt, or are dealing, with

the same types of situations you are facing. 

■ Share the care of your child with your partner or others

close to the family. For example, if your child is in the

hospital for a long stay, you and your partner, or friends or

relatives, may want to take turns staying with your child.

Letting them help will not only give each of you a break

from the hospital, but it will help keep you from growing

apart when one becomes more involved than the other in

your child’s treatment.

Brothers and Sisters

The lives of children who have a brother or sister who has

cancer change a great deal. Siblings may have many different feelings about the brother or sister who has cancer and the extra

attention the child receives. They may feel sorry for their sibling

who is ill. Younger children may feel that they caused the cancer.

Or they may believe that their own needs are being ignored.

When a child is in the hospital and is very ill, the focus is on

that child. As a parent, you may not be able to pay as much attention to your other children as you did before. You may have to

miss many of their special school or sports events. You may also

use up all your energy and patience caring for your child who has

cancer and not have enough energy or time to talk with your

other children, play with them, or help them with their homework. It is natural, then, for siblings to be annoyed at the attention your child who has cancer is receiving.

82
As a result, siblings’ behavior may change. They may become

depressed, have headaches, or begin to have problems in school.

School counselors and support groups may be able to offer you

helpful advice for dealing with these issues. In addition, here are

some things you can do to help your other children:

■ Talk with them about their feelings. Talk with them

about the special attention your child who has cancer is

getting. Let them know that feeling mad is natural. Try to

explain what is happening and why you may not be

around as much as you were before.

■ Talk with them about the cancer, the treatment, and care.

Younger children’s fears can be helped by knowing they

couldn’t have caused the illness by wishing or by spreading

germs from a cold. Treatment and procedures should be

explained as being helpful things and not punishments.

■ Spend time with your other children. Try to spend some

time with them doing the things they like.

■ Encourage them to take part in outside activities. 

Make a point of noticing and praising what they do in

these activities.

■ Involve them in their brother’s or sister’s treatment.

Let them come along with you to the clinic or hospital.

Having them along will allow them to see for themselves

what the hospital, clinic, and treatment are like. 

■ Talk with them about questions their schoolmates and

friends may ask. Help them think of possible questions

and answers so that they will feel comfortable talking

about their brother’s or sister’s illness.

■ Ask other family members and friends to spend time

with the other children in the family. For example, an

aunt or uncle might go to school events or attend important games or performances. A neighbor might help them

with homework or take them on outings.

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Family and Friends

A diagnosis of cancer affects not only the child, parents, and

siblings, but also grandparents, other relatives, and friends. These

people can support and assist you during this time.

Your employers also may need to be told about your child’s illness, so they will know why you are asking for extra time off from

work. If needed, your child’s doctor can write your employer to

explain the situation.

You may need to tell people how to help you. Here are some

ideas on how to tell them:

■ Be open and honest.

■ Take the lead to show others how you and your child want

to be treated.

■ If they are giving you too much attention, point it out.

84
■ You may find it tiring to have to repeat details about your

child’s illness to many family members and friends. Ask

one person to handle calls and questions. Or, you can leave

short messages on a home answering machine.

■ It can be helpful to ask one friend or family member to be

the “point person” to share with people your needs—for

example, getting the wash done or shopping for groceries.

Financial and Insurance Issues

If you are like most parents of children who have cancer, you

will be worried about the costs of treatment and continuing care.

You want the best care but are afraid of the costs and how they

will be met. You may not have health insurance. Or insurance

may not cover all costs. Some insurers will not cover certain costs

when a new treatment is under study. 

You will need to understand the coverage that your policies

offer. Here are some tips for making the most of your insurance:

■ Get copies of your insurance policies and find out exactly

what is covered.

■ Get help if you need it to understand the policy or how to

file claims if you need to. Do not be afraid to ask friends,

family members, or a social worker for help. Private companies and some community organizations also offer help to

deal with insurance.

■ Keep careful records of all expenses and claims. Store bills

and insurance forms together to make it easier at tax time.

■ File claims for all covered costs. Sometimes, people do not

take full advantage of their insurance, either because they do

not know about a benefit or are put off by the paperwork.

■ If your claim is turned down, file again. Ask your doctor to

explain to the company why the services should be covered

under your policy. If you are turned down again, find out if

the company has an appeals process. 

85
What Does the Future Hold?

Because of better research and treatment, children who have

cancer are living longer than they used to, and their quality of life

is better. Although they lead normal lives, survivors of cancer have

some concerns that other people may not have. For example, they

must take extra-special care of their health and may have problems obtaining insurance. 

Ongoing Health Care

Regular exams are very important after treatment for cancer. At

these visits, your child receives both the health care needed by

anyone your child’s age and special care based on the type of cancer and treatments and current health.

In general, parents of children who have had cancer treatment

should do the following.

■ Schedule regular checkups. Children who have been treated

for cancer usually return to the doctor every 3 to 4 months at

first, and once or twice a year later on. Ask the doctor how

often your child needs to return for followup exams.

■ Be alert to signs of the possible return of cancer. 

Doctors have no way to tell for sure whether your child’s

cancer will return. If it does return, it could be weeks,

months, or years after treatment ends. Talk with your

child’s doctor and treatment team about the chances of

cancer returning and the signs of cancer’s return.

■ Be alert to signs of lasting effects of cancer treatment.

Cancer treatment may cause side effects many years later.

Some cancer treatments may affect your child’s ability to

have children in the future; affect how your child learns

and grows physically; or increase your child’s risk of developing a second type of cancer.

86
■ Be tuned in to any problems your child may have in

dealing with feelings about having had cancer, even

years after treatment has ended. Once all the activity of

treatment is over, some children suddenly fully realize what

happened to them. It can be a very upsetting. At this point,

they may need to talk about their feelings and may even

need to see a counselor.

■ Promote good health habits. Eating well and getting

enough sleep and exercise will help your child feel better

and be healthy.

To better understand your child’s health care needs today and

in the future, ask the doctor and treatment team.

87

You need information to continue to take care of your child’s

health. As your child gets older, he or she also will need this

information. You may want to ask the doctor and treatment

team the following questions:

■ How often should my child have checkups?

■ What are the signs of cancer’s return or of long-term

effects? How likely are they to occur?

■ What changes may occur that are not danger signs?

■ What kind of diet should my child follow?

■ What are the choices for handling chronic pain, the

return of cancer, or the long-term effects of therapy?

■ What is the best way for me to talk with you about future

concerns? (By phone? At a special appointment? At a regular office visit scheduled in advance to allow more time?)

■ Who else is available to talk about specific problems?
Insurance Issues in the Future

Another concern of parents is what happens to health insurance coverage and costs after your child has had treatment for

cancer. Your child is likely to continue to be covered under your

current insurance, but you may have to pay more. If you change

jobs or apply for a new policy, however, you may have trouble getting the new coverage for your child, and it may cost more. Older

teenagers who may soon be leaving home and looking for a job

need to pay special attention to insurance needs. Going off their

parent’s insurance will mean finding coverage on their own.

One key to making sure your child has insurance coverage is to

ask the right questions before changing jobs and look at what

your health insurance coverage will include if you change policies. 

88
What Care Is Available

When the Cancer 

Cannot Be Cured?

Although treatments work for many children who have cancer,

they do not work for all. If your child’s disease cannot be cured or

controlled, you may want to think about where your child would

be most comfortable—in the hospital, at home, or in a homelike

setting. Talk with your child’s treatment team about the different

choices available to you and your family. It is important to talk

with your child about what he or she would like. If your child is

too young to speak or does not understand, make a choice based

on what you think your child might want.

Special machines and treatments that can help someone live

longer and more comfortably are often an accepted part of treating a severe illness. For this reason, many children with terminal

cancer and their families choose hospital care. They want to know

that everything in the hospital is available to them. More and

more cancer patients and their families, however, are choosing

care outside of the hospital. As a parent, it is important to know

that, with the help of nurses, doctors, and other health professionals, your child can receive good care outside the hospital.

Home Care

Home care is a good choice for many children who have cancer. Home health care professionals can provide cancer drugs, pain

medications, equipment such as hospital beds or wheelchairs,

proper nutrition, physical therapy, and many complicated nursing

and medical care procedures. They also provide emotional support

for you and your child and for brothers, sisters, and other family

members.

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Some people choose home care because hospital care can seem

cold. Another advantage of home care is that family and friends,

including your child’s friends, can support and help you. Home

care involves bringing members of the home health care team into

your house or possibly into the home of a relative or friend.

Depending on the needs and concerns of your child and your

family, the home health team may include all or many of the following professionals: nurses or nurse practitioners, social workers,

dietitians, physical therapists, pharmacists, oncologists, radiation

therapists, clergy, and a psychologist or psychiatrist. Home health

aides also are available to help with bathing, personal care, or

preparing light meals, as needed. In many cases, specially trained

volunteers, called respite care workers, can care for your child

when you need a few hours away from home.

You, your family, and, when possible, your child, will work

closely with health care workers to make sure that your child is

comfortable and receives the best care possible. If 24-hour care is

needed, members of the team will work different shifts to give you

and your child around-the-clock support.

Home care is given through various for-profit and not-for-profit private agencies, public and private hospitals, and public health

departments. Your child’s treatment team can give you information on home health care. 

Hospice Care

Hospice programs provide special care for cancer patients and

their families, either at home or away from home, in separate

buildings, or within hospitals. A team of medical professionals and

volunteers works with the family and patient. The main concerns

of hospice caregivers are quality of life and control of pain.

Hospice caregivers also help family members learn how to care

for children who have terminal cancer. They give emotional,

social, and spiritual support during your child’s illness and after

your child dies.

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About 1,800 hospice programs across the country offer 

total hospice care. The National Hospice and Palliative Care

Organization encourages and tracks the quality of hospice care.

Children’s Hospice International advocates for hospice care for

children. You can find more information about these organizations by calling the NCI-supported Cancer Information Service

(CIS) at 1-800-4-CANCER (1-800-422-6237) or TTY at 1-800-332-

8615.

Day-to-Day Concerns

During the past several years, health care professionals have

become more aware of the needs of children who have late-stage

cancer and of their families. For example, attending school halfdays or even for an hour a day—if possible—may make your child

happier. Talking with your child about death and dying and giving

your child as many choices as possible shows your child that you

are being open and honest, and shows your support, love, and

respect. Paying close attention to changes in your child’s behavior

may give you important clues as to what your child needs and

whether he or she wants to talk about dying. Including all of your

children in everyday activities—such as reading, doing homework,

or watching a favorite television program or video together—can

help keep the family close.

91
Resources

Information about cancer is available from many sources,

including the ones listed here. You may want to check for more

information at your local library, at bookstores, or from support

groups in your community.

National Cancer Institute Information Resources

You may want more information for yourself, your family, and

your doctor. The following National Cancer Institute (NCI) 

services are available to help you.

Telephone...

Cancer Information Service (CIS)

Provides accurate, up-to-date information on cancer to patients

and their families, health professionals, and the general public.

Information specialists translate the latest scientific information

into understandable language and respond in English, Spanish, or

on TTY equipment.

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

TTY: 1-800-332-8615

Internet...

http://cancer.gov

NCI’s primary Web site; contains information about the Institute

and its programs, cancer information, and clinical trials.

Fax...

CancerFax®

Includes NCI information about cancer treatment, screening, 

prevention, and supportive care. To obtain a contents list, dial 

1-800-624-2511 or 301-402-5874 from your touch-tone phone or

fax machine handset and follow the recorded instructions.

92
For Additional Information

The Children’s Oncology Group 

The Children’s Oncology Group (C.O.G.) was formed by the merger of the four national pediatric cancer research organizations: the

Children’s Cancer Group, the Intergroup Rhabdomyosarcoma

Study Group, the National Wilms’ Tumor Study Group, and the

Pediatric Oncology Group. The primary objective of the organization is to conduct clinical trials of new therapies for childhood

cancers. Pediatric clinical trials are conducted across the country.

The C.O.G. Web site is

http://www.nccf.org/NCCF/AboutCCG/COG_who.htm

Other Booklets

The National Cancer Institute booklets listed below can be

obtained from the NCI-supported Cancer Information Service

(CIS) by calling 1-800-4-CANCER (1-800-422-6237) or TTY at 

1-800-332-8615. Also, many NCI publications may be viewed or

ordered at http://cancer.gov/publications.

Booklets About Cancer, Cancer Treatment, and Side Effects

■ Chemotherapy and You: A Guide to Self-Help During Treatment

■ Eating Hints for Cancer Patients

■ El dolor relacionado con el cáncer

■ El tratamiento de radioterapia: guía para el paciente durante el

tratamiento

■ Get Relief from Cancer Pain

■ La quimioterapia y usted: Una guía de autoayuda durante el

tratamiento del cáncer

■ Radiation Therapy and You: A Guide to Self-Help During

Treatment

■ Taking Part in Clinical Trials: What Cancer Patients Need To

Know

93
■ Pain Control: A Guide for People With Cancer and Their

Families

■ Understanding Cancer Pain

■ What You Need To Know About...

(This is a series of booklets. Each provides information

about a specific type of cancer, including symptoms, diagnosis, treatment, emotional issues, and questions to ask the

doctor. Some are available in Spanish.)

Booklets About Living with Cancer

■ Facing Forward

■ Taking Time: Support for People With Cancer and the People

Who Care About Them

■ When Cancer Recurs: Meeting the Challenge Again

■ Advanced Cancer: Living Each Day

94
Appendix

95

Common Childhood Cancers

Type Description Age

LEUKEMIAS

All leukemias

Acute 

lymphoblastic

leukemia (ALL)

Acute 

myelogenous

leukemia (AML)

Chronic 

myelogenous

leukemia (CML)

Leukemia is cancer of

the blood cells. In acute

leukemia, the disease

comes on suddenly and

gets worse quickly if it is

not treated. Most childhood leukemias are

acute. Chronic leukemia

is usually milder at the

start and gets worse

more slowly.

Also known as “childhood leukemia” because

it is the most common

childhood cancer.

Also called acute nonlymphatic leukemia.

CML is a slowly progressing disease in which too

many white blood cells

are made in the bone

marrow. Also called

chronic myeloid

leukemia or chronic

granulocytic leukemia. 

Usually occurs between

2 and 8 years old.

Usually occurs in 

people over age 25,

but sometimes affects

teenagers and children.

Sometimes occurs in 

adolescents but almost

never affects children.

Most commonly

affects adults.

Five percent of childhood leukemias are

CML.
96

Common Childhood Cancers (continued)

Type Description Age

LYMPHOMAS

All lymphomas

Hodgkin’s 

disease

Non-Hodgkin’s 

lymphoma

Burkitt’s 

lymphoma

Lymphoma is a tumor of

the lymph tissue.

Because lymph tissue is

in many parts of the

body, lymphomas can

start almost anywhere.

Hodgkin’s disease is a

cancer that tends to

affect the lymph nodes

that are close to the

body’s surface, such as

those in the neck,

armpit, or groin area.

In children, nonHodgkin’s lymphoma

affects lymph nodes that

are found deeper in the

body. The bowel is the

most frequent spot,

often in the area next to

the appendix, or in the

upper part of the chest.

A type of non-Hodgkin’s

lymphoma. In

Americans, the usual site

is the abdomen. 

Occurs mainly in 

young adults and in

people over age 65

but can affect

teenagers and children. Lymphomas are

the third most common childhood cancer.

Rare under age 5.

Occurs most often in

ages 10 to 20.

Unusual under age 3.

Age range is 2–16 

years
97

Common Childhood Cancers (continued)

Type Description Age

BONE CANCERS

Osteosarcoma

or osteogenic

sarcoma

Ewing’s sarcoma

Chondrosarcoma

All liver cancers

Osteosarcoma is the

sixth most common

malignancy in children

and the most common

type of bone cancer in

children. Usually affects

the thigh bone (femur),

upper arm bone

(humerus), or one of the

long bones of the lower

leg (tibia).

The most common sites

for Ewing’s sarcoma are

the hipbones, long

bones in the thigh

(femur) and upper arm

(humerus), and ribs.

Chondrosarcoma forms

in cartilage, the rubbery

tissue around the joints.

Also called hepatoma,

liver cancer is a rare disease. When the tumor is

just in the liver and can

be removed with surgery,

it is highly curable. Two

types of cancer can start

in the liver and are identified by how they look

under the microscope.

Occurs between ages

10 and 25.

Occurs between ages 

10 and 25.

Found mainly in 

adults, although it can

occur in children.

LIVER CANCERS
98

Common Childhood Cancers (continued)

Type Description Age

LIVER CANCERS (continued)

Hepatoblastoma

Hepatocellular 

cancer

All soft tissue 

sarcomas

Rhabdomyosarcoma

Hepatoblastoma can be

inherited.

Children infected with 

hepatitis B or C (viral

infections of the liver)

are more likely to get

this type of cancer.

These sarcomas start in

soft tissues, which 

connect, support, and

surround body parts 

and organs.

Rhabdomyosarcoma is 

the most common type

of soft tissue sarcoma. It

starts in muscle tissue

and can occur anywhere

in body. It is most often

found in the head and

neck, kidneys, bladder,

arms, legs, and trunk.

SOFT TISSUE SARCOMAS

Usually occurs before 

age 3.

Occurs most often in 

children age 4 or

younger and those

between ages 12 and

15.

Affects children ages 

2 to 6 years old.
99

Common Childhood Cancers (continued)

Type Description Age

OTHER CANCERS

Brain cancer

Wilms’ tumor or 

nephroblastoma

Neuroblastoma

Brain cancer is the most

common solid tumor

cancer in childhood. 

The most common 

brain tumors are called

gliomas; there are several types of gliomas.

This type of cancer starts

in the kidney. It is the

most common type of

kidney cancer in children

but is very different from

kidney cancer in adults.

May be hereditary.

Cancer of certain nerve

cells of the body is

called neuroblastoma.

The second most common solid tumor cancer

in children, it usually

starts in abdomen,

either in the adrenal

glands (located just

above kidneys in back of

the upper abdomen) or

around the spine. It can

also start around the

spinal cord in the chest,

neck, or pelvis.

Occurs most often in 

children from birth to

15 years old.

Age range 6 months 

to 10 years—greatest

in first 5 years.

Occurs most often in 

babies and very young

children.
100

Common Childhood Cancers (continued)

Type Description Age

OTHER CANCERS (continued)

Retinoblastoma Retinoblastoma is cancer

of the eye. It affects the

retina, a thin membrane

in the back of eye that

works like a camera,

making a picture of

what we see. Some children have retinoblastoma that runs in families. It usually occurs in

only one eye, but sometimes affects both eyes. 

Occurs mostly in 

children younger than

5 years old.
Dictionary

The definitions below are based on those found in the National

Cancer Institute’s CancerNet dictionary, which is available online

at http://www.cancernet.nci.nih.gov/dictionary.html.

angiogram (AN-jee-o-gram): An x-ray of blood vessels; the person

receives an injection of dye to outline the vessels on the x-ray.

antigens: Substances that cause the immune system to make a

specific immune response.

benign (beh-NINE): Not cancerous; does not invade nearby tissue

or spread to other parts of the body.

biological response modifier (by-o-LAHJ-i-kul): (BRM) A substance that stimulates the body’s response to infection and disease. 

biological therapy (by-o-LAHJ-i-kul): Treatment to stimulate or

restore the ability of the immune system to fight infection and

disease. Also used to lessen side effects that may be caused by

some cancer treatments. Also called immunotherapy or biological

response modifier (BRM) therapy.

biopsy (BY-ahp-see): A procedure used to remove cells or tissues in

order to look at them under a microscope to check for signs of disease. When an entire tumor or lesion is removed, the procedure is

called an excisional biopsy. When only a sample of tissue is

removed, the procedure is called an incisional biopsy or core 

biopsy. When a sample of tissue or fluid is removed with a needle,

the procedure is called a needle biopsy or fine-needle biopsy. 

bone marrow: The soft, sponge-like tissue in the center of bones

that produces white blood cells, red blood cells, and platelets.

bone marrow aspiration (as-per-AY-shun): The removal of a

small sample of bone marrow (usually from the hip) through a

needle for examination under a microscope.

101
bone marrow biopsy (BY-ahp-see): The removal with a needle of a

sample of tissue from the bone marrow for examination under a

microscope.

bone marrow transplantation (trans-plan-TAY-shun): A procedure

to replace bone marrow damaged by cancer or by treatment with

high doses of anticancer drugs or radiation. Transplantation may

be autologous (the person’s marrow saved before treatment), allogeneic (marrow donated by someone else), or syngeneic (marrow

donated by an identical twin). 

cancer: A term for diseases in which abnormal cells divide without

control. Cancer cells can invade nearby tissues and can spread

through the bloodstream and lymphatic system to other parts of

the body.

carcinoma (kar-sin-O-ma): Cancer that begins in the skin or in tissues that line or cover internal organs.

catheter (KATH-i-ter): A flexible tube used to deliver fluids into or

withdraw fluids from the body.

CBC (complete blood count): A test to check the white blood

cells, hemoglobin, hematocrit, platelet count, and reticulocyte

count in a sample of blood. 

chemotherapy (kee-mo-THER-a-pee): Treatment with anticancer

drugs.

child-life worker: A professional worker who helps children cope

better with being in the hospital and getting treatment by arranging play therapy, schoolwork, and other activities. 

clinical trial: A research study that evaluates the effectiveness of

new interventions in people. Each study is designed to evaluate

new methods of screening, prevention, diagnosis, or treatment of

a disease.

colony-stimulating factors: Proteins that cause the bone marrow

to develop different types of blood cells.

102
combination chemotherapy: Treatment using more than one

anticancer drug.

combination therapy: Treatment using more than one therapy—

such as chemotherapy, surgery, radiation immunotherapy—to

treat the cancer. 

culture: A lab test used to find and identify the type of infection.

Bacteria in blood samples or other body samples are made to grow

in a special substance so that they can be studied. 

cytokines: Proteins formed in small amounts by all human cells

to help control the working of cells.

CT scan: computerized tomography scan. A series of detailed pictures of areas inside the body: The pictures are created by a computer linked to an x-ray machine. Also called computerized axial

tomography or CAT scan.

distraction: Doing an activity that takes one’s mind off the pain

or helps one to relax. Some examples of activities are painting,

doing a puzzle, or working on a craft. 

guided imagery: Using your imagination to create a picture in the

mind, like a daydream. It can be used to help relax or take your

mind off of the pain or a procedure. 

hypnosis: A trance-like state that is similar to sleep, but the person can talk and hear. This state can be brought on by a person

trained as a hypnotist, or it can be self-induced. Hypnosis can be

used to ease pain. 

immune system (im-YOON): The complex group of organs and

cells that defends the body against infection or disease.

immunotherapy (IM-yoo-no-THER-a-pee): Treatment to stimulate

or restore the ability of the person’s immune system to fight infection and disease. Also used to lessen side effects that may be

caused by some cancer treatments. Also called biological therapy

or biological response modifier (BRM) therapy.

103
104

infection: A condition in which germs enter the body and cause

fever and illness. 

informed consent: Written permission given before surgery,

research, or other kinds of treatments or tests. The patient or a

parent or guardian must understand the treatment and legally

agree to any risks involved.

interferon: A type of cytokine that helps the immune system slow

the rate of growth and division of cancer cells.

interleukins: A type of cytokine made by a type of white blood

cell called a lymphocyte.

intramuscular (IM): Injecting a drug into a muscle. The drug is

then absorbed into the bloodstream. 

intrathecal (in-tra-THEE-kal): (IT) The thin space beneath the 

lining of the spinal cord and brain. 

intravenous (in-tra-VEE-nus): (IV) Injected into a vein. 

leukemia (loo-KEE-mee-a): Cancer of the blood-forming tissue.

local therapy: Treatment that affects cells in the tumor and the

area close to it. 

lumbar puncture: The insertion of a needle into the lower part of

the spinal column to collect cerebrospinal fluid or to give anticancer drugs intrathecally. Also called a spinal tap. 

lymph (limf): The almost colorless fluid that travels through the

lymphatic system and carries cells that help fight infection and

disease.

lymph node: A rounded mass of lymphatic tissue that is surrounded

by a capsule of connective tissue. Also known as a lymph gland.

Lymph nodes are spread out along lymphatic vessels and contain

many lymphocytes, which filter the lymphatic fluid (lymph).
105

lymphangiogram (lim-FAN-jee-o-gram): X-rays of the lymphatic

system. A dye is injected into a lymphatic vessel and travels

throughout the lymphatic system. The dye outlines the lymphatic

vessels and organs on the x-ray.

lymphatic system (lim-FAT-ik): The tissues and organs that produce, store, and carry white blood cells that fight infection and

other diseases. This system includes the bone marrow, spleen, thymus, and lymph nodes and a network of thin tubes that carry

lymph and white blood cells. These tubes branch, like blood vessels, into all the tissues of the body.

lymphoma (lim-FO-ma): Cancer that arises in cells of the lymphatic system.

malignant (ma-LIG-nant): Cancerous; a growth with a tendency

to invade and destroy nearby tissue and spread to other parts of

the body.

metastasize (meh-TAS-ta-size): To spread from one part of the

body to another. When cancer cells metastasize and form secondary tumors, the cells in the metastatic tumor are like those in the

original (primary) tumor.

metastatic cancer: Cancer that has spread from the place in

which it started to other parts of the body.

monoclonal antibodies (MAH-no-KLO-nul AN-tih-BAH-deez):

Laboratory-produced substances that can locate and bind to cancer

cells wherever they are in the body. Many monoclonal antibodies

are used in cancer detection or therapy; each one recognizes a different protein on certain cancer cells. Monoclonal antibodies can

be used alone, or they can be used to deliver drugs, toxins, or

radioactive material directly to the tumor.

MRI: Magnetic resonance imaging (mag-NET-ik REZ-o-nance IM-ajing). A procedure in which a magnet linked to a computer is used

to create detailed pictures of areas inside the body.
106

nerve blocks: A method in which medicine is injected into or

around a nerve to numb or deaden the nerve fibers to give temporary relief of pain.

nuclear scans: A procedure in which a radioactive substance is

swallowed or is injected into a vein. The substance collects in areas

of the body where cells are dividing rapidly, a condition typical of

cancer cells. Pictures are then taken that show the amounts of

radioactivity that has collected in the organ being examined.

Larger or smaller amounts of radioactivity may mean that cancer

or other disorders are present. 

oncologist (on-KOL-o-jist): A doctor who specializes in treating

cancer.

oncology nurse: A nurse who specializes in treating and caring for

people who have cancer.

pathologist (pa-THOL-o-jist): A doctor who identifies disease by

studying cells and tissues under a microscope.

pediatric (pee-dee-AT-rik): Having to do with children.

peripheral blood stem cell transplant: A method of replacing

blood-forming cells destroyed by cancer treatment. Immature

blood cells (stem cells) in the circulating blood that are similar to

those in the bone marrow are given after treatment to help the

bone marrow recover and continue producing healthy blood cells.

physical therapy: Teaching a person to perform skills that were

done before an illness or accident, or how to use an artificial limb. 

plasma (PLAZ-ma): The clear, yellowish, fluid part of the blood

that carries the blood cells. The proteins that form blood clots are

in plasma. 

platelets (PLAYT-lets): A type of blood cell that helps prevent

bleeding by causing blood clots to form. Also called thrombocytes.
107

prosthesis (pros-THEE-sis): An artificial replacement of a part of

the body.

prosthetist (PROS-theh-tist): A person skilled in making artificial

limbs

protocol: A detailed plan a doctor follows in treating a cancer

patient. Different cancer patients have different protocols.

Protocols are used in both clinical trials and standard therapy.

radiation therapy (ray-dee-AY-shun): The use of high-energy radiation from x-rays, neutrons, and other sources to kill cancer cells

and shrink tumors. Radiation may come from a machine outside

the body (external-beam radiation therapy) or from material called

radioisotopes. Radioisotopes produce radiation and are placed in

or near a tumor or near cancer cells. This type of radiation treatment is called internal radiation therapy, implant radiation, or

brachytherapy. Systemic radiation therapy uses a radioactive substance, such as a radiolabeled monoclonal antibody, that circulates

throughout the body. Also called radiotherapy. 

radioisotope: An unstable element that releases radiation as it

breaks down. Radioisotopes can be used in imaging tests or as a

treatment for cancer.

recurrence: The return of cancer, at the same site as the original

(primary) tumor or in another location, after it had disappeared. 

red blood cells: (RBCs) A type of cell that carries oxygen to all

parts of the body. Also called erythrocytes.

relaxation therapy: Using relaxation methods to help ease pain

and feel more relaxed. 

remission: Disappearance of the signs and symptoms of cancer.

When this happens, the disease is said to be “in remission.” A

remission may be temporary or permanent.

sarcoma (sar-CO-muh): A cancer of the bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue.
solid tumor: Cancer of body tissues other than blood, bone marrow, or the lymphatic system.

spinal tap: A test in which a fluid sample is removed from the

spinal column with a thin needle. Also called a lumbar puncture.

staging: Doing exams and tests to learn the extent of the cancer

within the body, especially whether the disease has spread from

the original site to other parts of the body. 

standard therapy: A currently accepted and widely used treatment for a certain type of cancer, based on the results of past

research. 

subcutaneous (sub-kyoo-TAY-nee-us): Beneath the skin.

supportive care: Treatment given to prevent, control, or relieve

complications and side effects and to improve the person’s comfort and quality of life.

surgery: A procedure to remove or repair a part of the body or to

find out if disease is present.

systemic (sis-TEM-ik): Affecting the entire body.

systemic therapy: Treatment that uses substances that travel

through the bloodstream, reaching and affecting cells all over the

body. 

tissue (TISH-oo): A group or layer of cells that together perform

specific functions.

tumor (TOO-mer): An abnormal mass of tissue that results from

excessive cell division. Tumors perform no useful body function.

They may be either benign (not cancerous) or malignant (cancerous).

tumor marker: A substance sometimes found in an increased

amount in the blood, other body fluids, or tissues, and which may

mean that a certain type of cancer is in the body. Examples of

108
tumor markers include CA 125 (ovarian cancer), CA 15-3 (breast

cancer), CEA (ovarian, lung, breast, pancreas, and gastrointestinal

tract cancers), and PSA (prostate cancer). Also called biomarker.

ultrasound test: A test that bounces sound waves off tissues and

internal organs and changes the echoes into pictures (sonograms).

white blood cell: A type of cell in the immune system that helps

the body fight infection and disease. White blood cells include

lymphocytes, granulocytes, macrophages, and others.

x-ray: High-energy radiation used in low doses to diagnose diseases,

and in high doses to treat cancer.

109
Notes

110
The National Cancer Act, passed by Congress in 1971, made cancer

research a national priority. Since that time, the National Cancer Institute

(NCI), the lead Federal agency for cancer research, has collaborated with

top researchers and facilities across the country to conduct innovative

research leading to progress in cancer prevention, detection, diagnosis,

and treatment. These efforts have resulted in a decrease in the overall 

cancer death rate, and have helped improve and extend the lives of 

millions of Americans. 

National Cancer Institute materials and artwork are in the public

domain and not subject to copyright restrictions when they are produced

by Government employees. However, most NCI materials are developed

by private sector writers, designers, photographers, and illustrators under

contract to the Government. The copyright for these materials often

remains in the hands of the originators, and it is necessary to request 

permission to use or reproduce these materials. In many cases, permission

will be granted, although a credit line and/or fees for usage may be

required. To obtain permission, write to Permissions Department, National

Cancer Institute, Room 10A28, 31 Center Drive, MSC 2580, Bethesda, MD

20892-2580.
NIH Publication No. 01-2378

Revised January 2001

Reprinted September 2001

P130

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Public Health Service

National Institutes of Health