Acknowledgments

The National Cancer Institute thanks the many cancer survivors, advocates and health

care professionals who assisted with the development and review of this publication.

Special thanks to:

Asian Pacific Islander National Cancer Survivors Network, Bosom Buddies at the

Women’s Center of Jacksonville, The Children’s Cause, Inc., Intercultural Cancer

Council, National Network and Outreach Program, National Asian Women’s Health

Organization, National Witness Project, Native American Cancer Research Corporation,

National Coalition of Cancer Survivors, Nueva Vida, Sisters Surviving, The Susan G.

Komen Breast Cancer Foundation, Us Too! International, Inc., and The Wellness

Community, for giving us stories to use in this booklet.
This book is given to you by
About This Book 2

Making a Difference: What it Means 7

Making a Difference: How You Can Benefit 7

Things to Think About 9

Finding Ways You Can Make a Difference: A Guide 15

Making a Difference in Everyday Ways 21

About Making a Difference in Everyday Ways 22

Helping With Everyday Activities 22

Sharing Your Experiences 23

Working With Others in Your Own “Backyard” 26

Talking With Doctors, Nurses, and Other Health Care Providers 28

Making a Difference With Cancer-Related Organizations 33

About Making a Difference With Cancer-Related Organizations 34

Working With Service and Support Organizations 36

Working With Awareness and Education Organizations 38

Working With Fundraising Organizations 39

Working With Advocacy Organizations 41

Making a Difference in Cancer Research 45

About Making a Difference in Cancer Research 46

Taking Part in Cancer Research 46

Influencing Cancer Research 47

Joining an Institutional Review Board 48

Federal Government Programs That Welcome Consumer Involvement 51

Making a Difference in Government Programs and Policies 55

About Making a Difference in Government Programs 

and Policies 56

Working With Local and State Government Cancer Programs 56

Working With National Government Cancer Programs 57

Contents
Making a Difference: Resources to Learn More 63

Thinking About Your Choices: A Guide 63

Using the Internet for Medical Advice 65

The Cancer Survivors’ Bill of Rights 67

Getting Information From the National Cancer Institute 71

Organizations Where You Can “Make a Difference” 72

Cancer Organizations 72

General Organizations 72

Bone Marrow Donors/Recipients 75

Hospice 76

Lymphedema 77

Ostomy 77

Survivorship 77

Organizations by Cancer Type 79

Bladder and Urologic Cancer 79

Brain Cancer 79

Breast Cancer 80

Cancers of the Ovary, Uterus, Vulva, and Cervix (Gynecologic Cancers) 83

Children’s Cancers 85

Colon/Rectal Cancer 87

Kidney Cancer 88

Leukemia/Lymphoma 88

Lung Cancer 90

Mesothelioma 90

Multiple Myeloma 90

Oral and Head and Neck Cancer 91

Pancreatic Cancer 91

Prostate Cancer 92

Skin Cancer and Melanoma 93

Employment and Legal Rights for Cancer Survivors 94

Disability and Discrimination 94

Legal Assistance 96

Other Legal Information 96
1

Giving back has

helped my

recovery ... I was

able to get

involved and get

moving. When I’m

helping others, I

don’t have time

to think about

myself or to have

any self-pity,

because I’m too

busy.

“I started out as a volunteer with a local breast cancer

project in my hometown. Women who had survived

breast cancer were going around to churches telling their

stories. I heard about what those women were doing

after I had completed treatment for my second cancer. I

was starting to get back on my feet and thinking

differently about my life. The first time I got breast

cancer, at age 35, I went on with life as usual—raised

my children, sent them to college, planned their

weddings. But after the second diagnosis, 20 years later,

it hit me that: ‘Hey! You’re a breast cancer survivor, and

you can do something.’ So I started helping other people.

I was very excited about going into the churches because

I was brought up in the church, and it was something I

felt I could do. Right away, it became a passion for me. I

loved the results I got: Women became more aware of

breast cancer and were less frightened about it. Anytime

you can see that you are making a difference, it is

something that keeps you going.

Giving back has helped my recovery. From personal

experience, I can say that helping others helps you. It is

therapy. It gave me something to do and took my mind

off what I was going through. I was able to get involved

and get moving. When I’m helping others, I don’t have

time to think about myself or to have any self-pity,

because I’m just too busy. And it helped me to learn

more about my own health. 

I think my greatest reward is that I have made so many

wonderful friends, and that has been valuable to my

recovery. My life is richer because I have had the

opportunity to help others. I have met so many men and

women who have enriched my life and have given me

the encouragement to keep on going. I know that there

is a purpose and a design to what I have gone through.”

Mattye, two-time breast cancer survivor, 62
2

About This Book

Many people want to make a difference in cancer. They

may want to learn how to help their neighbors, join an

educational group, run in a race, or be part of group that

makes decisions about cancer research or programs.

The National Cancer Institute (NCI) has written this

book as a way to help cancer survivors get involved

in activities like these. This book is also a tool

organizations can use to help people who ask, “What 

can I do to fight cancer?”

Whether you have cancer or know someone who does,

this book has many ideas about ways you can get started

in making a difference.

This book is written for people who are:

• Newly diagnosed with cancer.

• In treatment now or finished with treatment.

• Living with cancer as a long-term illness.

• Having a recurrence of cancer (whose cancer has

returned).

• Family members or friends of someone with cancer

or someone who had cancer.

• At high risk for getting cancer.

This book includes information to help you:

• Learn what it is like to make a difference

in the fight against cancer. The book has

many stories about people who are involved in

cancer-related activities. We hope these stories will

interest and inspire you.

• Decide if you want to “get involved” and

volunteer to help others. Some people are

ready right now; others may never be. You need to

decide if the time is right for you to get involved.
W AYS Y O U C A N M AKE A D IFFERENCE 3

• Choose activities that interest you. The Guide on

page 15 can help you find cancer-related activities 

you might like to do. The Guide also has ideas about

ways you can put your interests, talents, and skills to

good use.

• Learn about cancer organizations. The resource

section at the back of this book has information about

cancer organizations across the country. It includes

phone numbers, addresses, and Web sites for many of

these groups.

Read this book when the time is right for you. You might

want to:

• Read only the chapters that interest you. Some

of the chapters may interest you more than others. Read

the ones that have meaning for you now. As your needs

and interests change, you can go back and read the

chapters you skipped before.

• Share this book with a friend or family

member. People who know someone with cancer, as

well as those who have cancer, may want to learn how

they can make a difference and get involved.

• Save this book for another time. You may not 

be ready, interested, or able to get involved right now.

That’s okay. Save this book for another time or give 

it to someone else who wants to know more about

cancer-related activities.
We use two symbols to help you find your way through the

information in the book: 

means that this section discusses questions 

that might come up and possible solutions

to them.

means that this section has helpful hints

about how to get started with a cancerrelated activity.

4

Terms used in this book

Cancer survivor is used throughout this book. We use the term to

describe someone who is recovering or has recovered from cancer.

Survivors can also be family members or caretakers of people treated

for cancer. Not everyone likes the term survivor, but we use it to help

people think about their lives as more than just a cancer diagnosis.

Cancer-related activity refers to any activity that helps others in

their cancer experience. A cancer-related activity can be a one-time

event, like talking on the phone to someone who has cancer. It can also

be a more long-term activity, like planning a cancer awareness program

where you live.

?

“When I was diagnosed, it was a

frightening, lonely time. Everything

changed when I found others who were

fighting the same disease. Once I had

the information I needed and my

situation was under control, I decided to

help others.”

Steve, myeloma survivor, 48

Cancer survivors and those who are close to them, as well as people who

have lost someone to cancer, know what it is like to live with cancer.

Getting involved in cancer-related activities is like a two-way street. When

you help others, you also help yourself. Here are some benefits of getting

involved in cancer-related activities:

• You accept cancer as part of your life. When you get

involved, cancer can give a new meaning to your life. “Now that I am

a cancer survivor, my life will go on, but it has changed. I need to make

my cancer experience mean something,” said one 42-year-old survivor.

• You are less afraid of cancer. People often find that the more

they know about cancer, the less they fear it. 

• You may feel more spiritual. As one survivor said, “I am

fulfilling a promise that I made to God.”

• You feel that you are doing something useful with your

cancer experience. As one person said, “Getting involved is a

powerful force in my life because I am doing something to make the

world better.”

7

Making a Difference:

How You Can Benefit 
8

• You have more confidence. People often feel better

when they work with others toward a common goal. As

one survivor said, “I’m not a victim anymore.”

• You meet other people who share the same kind

of experiences. “Only another survivor can tell how it is

and sympathize with a person and offer support and advice,”

said a 36-year-old survivor.

• You make a difference in other people’s lives.

People can feel good when they make a difference in the

lives of others.

• You teach others about cancer. This includes talking

with people about what it means to have cancer as well

helping someone through it. As a father who lost a child to

leukemia said, “It is not just about me and my daughter. It is

about all the moms and dads who have to go through this

painful experience with their kids. We know what it is like to

be afraid, feel guilty, and not know where to turn. I will keep

on working for these kids and their parents to make sure that

their needs are met.”

• You find meaning in the face of a life-threatening

illness. Research has shown that cancer survivors often

find new meaning in their lives when they get involved.

This can be an important part of the healing process.

Research has also shown that people who feel a part of

their community enjoy better health and feel a sense of

purpose in their lives. 
W AYS Y O U C A N M AKE A D IFFERENCE 9

Things to Think About 

“My cancer treatment was years

ago. At first, I wanted nothing to

do with cancer. I wouldn’t even

read a magazine that had an

article about cancer. Now, I am

ready, and I want to do

something with my cancer

experience.” 

Frieda, uterine cancer survivor, 72

People with cancer, as well as those who love and care about

them, may want to get involved in cancer-related activities.

But it is important to ask, “Is this the right time to get

involved?” 

The answer to this question will be different for each person,

since everyone has his or her own experience with cancer. As

you decide if this is the right time for you, think about how

long you’ve been dealing with cancer, your health, your

feelings, and your comfort in talking about cancer.
10

Think About How Long You’ve Been 

Dealing With Cancer

If you are reading this book, you may be:

• In treatment now, or recently finished with your

cancer treatment. Some people find that getting

involved helps them think about things other than cancer.

Some even say that it makes their treatment seem easier.

Other people find that treatment keeps them too busy or

leaves them too tired to get involved.

• Living with advanced cancer. Some people living

with advanced cancer feel that getting involved is a good

way to care for the people they will leave behind. They

want to make a difference and help others right up to the

end of their lives. Think about how you feel, and decide if

you have the health and strength to get involved now.

• At high risk for getting cancer. You may have a

strong family history of cancer and may be at risk for

getting the disease yourself. This can be hard to accept.

Some people find that getting involved in cancer-related

activities is a way to help themselves as well as others. 

• A family member or friend of someone with

cancer. You know what it is like to care for someone

who has cancer. Getting involved in volunteer activities 

is a good way for some people to give and get the

support they need, but it can also be hard. Think about

whether getting involved in cancer-related activities is

right for you.

• Someone who has lost a family member or

friend to cancer. You may still be sad and grieving

after someone you care about dies of cancer. Getting

involved can be a way for many people to do something

positive with these feelings.
W AYS Y O U C A N M AKE A D IFFERENCE 11

Think About Your Health

Think about your own health needs before you decide to get

involved. Decide if you have enough energy or time to start a

new project. Some people want to wait until their health is

better. Others choose an activity that is easy for them now.

Think About Your Feelings

People often think about their own experience when they get

involved in a cancer-related activity. This is good for some

people as it can help them deal with their own feelings. This

can also be hard. Sometimes people become upset when they

get involved in cancer-related activities.

Take some time to think about your feelings. If you are very

worried, angry, or depressed right now, you might want to

talk with a counselor about your feelings. Later, when you feel

more positive, you can begin to think about ways to help

others.

Think About Your Comfort in 

Talking About Cancer

You can still get involved in cancer-related

activities, even if you do not want to talk

about your own experience. If this is how

you feel, find activities in which you do not

have to share your personal feelings or

thoughts.
12

Think About What You Can Give

Many people are very busy and don’t have a lot of time

to give to cancer-related activities, but there are still

ways they can help others. For example, you can donate

money, books, or clothing that other people need for

their cancer care. 

Think About Where You Live

Some people, especially those who live in rural areas,

find that there are no cancer-related activities nearby. If

this happens, you might have to think about other ways

to get involved. You can, for example, start a new

activity or travel to one that is far away. You might also

want to get involved at a distance by phone, mail, or

over the Internet.

Think About What 

You Like to Do With

Your Time

Everyone has an interest or

skill that can help others. As

you decide how to get

involved, think about your

talents, interests, and lifestyle.

This includes your

culture, religion, and

even your hobbies.

You may also want to

think about what you

like and don’t like, as

well as subjects you

want to learn more

about.

?

What if “getting

involved” is a

constant

reminder of how

hard cancer is

for me?

Getting involved in

cancer-related

activities can

remind you of your

own experience.

This can be good,

as it may help you

with your own

issues while you

help others with

theirs. Getting

involved can also

be hard. If you find

you are not ready

right now, take the

time you need to

help yourself

before you offer to

help others.
W AYS Y O U C A N M AKE A D IFFERENCE 13

“Whenever somebody says to me, ‘I could

never get up in front of thousands of people

and speak like you do,’ I always say, ‘You

don’t have to.’”

Margaret, cervical cancer survivor, 42

Here are some examples of talents or skills that many people

have used to make a difference in cancer.

Skill or talent What you like to do

Listening Help people tell their stories and 

express their concerns. You also 

answer questions without giving 

your opinion or passing 

judgment.

Support Help others by offering to do 

errands, baby-sit, or drive them to 

appointments.

Enthusiasm Motivate others and give them 

ideas about how to get things done.

Creativity Come up with new ideas or use 

your talents, such as quilting, selling

homemade desserts, or developing

a public relations campaign.

Learning and teaching Learn new information and teach 

others what you know.

Communication Write. You can get your ideas 

across by writing articles or 

speaking in public.
14

Group work Work with others and be part of a 

team that gets things done.

Office skills Use the computer, talk on the 

phone, and organize records and 

files.

Organizational skills Plan meetings, events, or group 

activities, (like organizing a phone 

call alert list or “tree,” planning a 

fundraiser, or starting a local

support group).

Leadership skills Take charge and get things done. 

Get people to work together on 

an activity.

Skill or talent What you like to do

Even if you’re not sure about your skills or talents, the

Guide on page 15 can help you match your skills and

experiences with cancer-related activities. Use the Guide

to find the types of activities that interest and inspire you.
A Guide

Finding Ways You

Can Make a

Difference:

You’ve decided to make a difference in

cancer. Now, your work is to find activities

you like to do and that match your

interests. 

Use this Guide as a way to find activities

that interest you. There are no right or

wrong answers; simply put a checkmark

next to the statements that describe you. 

Answer all the questions first. If you have

two or more checkmarks in one section, you

may want to take a look at the pages it

directs you to. Reading these pages can give

you some ideas about ways you can make a

difference. 

W AYS Y O U C A N M AKE A D IFFERENCE 15
16

Directions: Put a checkmark (✔) next to each statement that

describes you. 

Thinking about Yourself

❑ I need to talk about my problems with other people.

❑ I feel lonely and want to talk with others who 

understand what I’ve been through.

❑ I want to learn new information about cancer.

❑ I want to know about and protect my rights as a 

cancer survivor. 

❑ I am unhappy with my health care situation and want

to make it better.

If you have two or more ✔s in this section, you

might want to help yourself (or someone close to you)

before you help others, even if you have ✔s in other

sections. You might also want to take some time to

learn more about your type of cancer. (See pages 

79-93 for more information.)

Helping Others

❑ I like to meet new people.

❑ I am good at listening to others.

❑ I like to talk with others about cancer information.

❑ I want to help people who are struggling with cancer.

❑ People helped me/us during treatment, and I now

want to do the same for others. 

If you have two or more ✔s in this section, you

may want to help others who are dealing with cancer.

Think about whether you want to help people on your

own or work with a cancer-related organization. (For

more information, go to the tab: Cancer-Related

Organizations.)
W AYS Y O U C A N M AKE A D IFFERENCE 17

Learning and Teaching

❑ People should learn more about cancer, and I would like to 

teach them.

❑ I like to talk with people—even people I don’t know.

❑ I like to speak in front of large groups of people.

❑ I enjoy talking about issues that are important to me, like cancer

screening or support for people with cancer.

If you have two or more ✔s in this section, you may want to

increase awareness and teach others about cancer. Think about

whether you want to help people on your own or work with a

cancer-related organization. (For more information, go to the tab:

Cancer-Related Organizations.)

Working on Cancer-Related Events

❑ I like working with people and being part of large

events.

❑ I would like to help with a local event—near where I

live or work.

❑ I want to get involved, but only have time to help once

in a while.

❑ I am comfortable asking people to donate to cancerrelated causes.

❑ I am interested in giving money, computers, or other

items to a cancer-related cause.

If you have two or more ✔s in this section, working on

fundraising or awareness events may be a good way for you to get

involved. Think about whether you want to help people on your

own or work with a cancer-related organization. (For more

information, go to the tab: Cancer-Related Organizations.)

Working in Advocacy

❑ I want to help change the health care system for others with cancer.

❑ I want to see changes in laws and policies related to cancer.

❑ I like the idea of talking to elected officials about cancer issues.
❑ I like to share my ideas with others through phone calls, letters, 

or e-mails.

❑ I want to be part of a network that can alert me about important

cancer issues. 

If you have two or more ✔s in this section, you may be

interested in getting involved with a specific cause, idea, or policy

related to cancer. This work is usually done with a cancer-related

organization. (For more information, go to the tab: Cancer-Related

Organizations.)

Working in Research

❑ I find science very interesting.

❑ I may be interested in taking part in a research study or clinical trial.

❑ I want to let others know about research studies and clinical trials.

❑ I want to help make decisions about cancer research.

❑ I like the idea of talking with scientists about my opinions on cancer.

If you have two or more ✔s in this section, you may be

interested in participating in research or encouraging others to do

so. (For more information, go to the tab: Cancer Research.)

Working in Government Programs

❑ I want to work on programs that help people with cancer.

❑ I want to share my ideas about ways to help people with cancer.

❑ I would like to help more people get screened for cancer.

❑ I think I would be comfortable talking about cancer with scientists

and public officials.

❑ I would like to know how new medicines and treatments are 

developed and approved.

If you have two or more ✔s in

this section, you might want to get

involved in government programs.

(For more information, go to the

tab: Government Programs and

Policies.)

18

21

All you need to

help others is

passion and

caring ... 

Even a short

conversation can

help save a

person’s life.

“When I was diagnosed 16 years ago, I was

scared. I thought cancer was a death sentence.

So I decided that if I survived, each day I

would tell at least one person with cancer that

fear is the enemy and education is the path to

survival. I set up two support groups at a local

hospital. There are a lot of myths that people

believe but aren’t true .... I wanted to educate

people so they can move from ‘victim’ to

‘victor.’ And I also did my own learning,

keeping up with the latest news about breast

cancer treatments. 

All you need to help others is passion and

caring. Even though people think you have to

live in a big city like New York or Chicago, you

can be in a small town and tell the people who

live near you where to get the information

they need. Even a short conversation can help

save a person’s life.

I’ve gotten back much more than I’ve given.

I’ve met some of the most courageous and

caring people in the world. Cancer has been a

positive force in my life. It’s given me a chance

to make a difference in the world. It’s not

always easy, but I have the courage to keep on

because I know that others need me.”

Bobbi, breast and thyroid cancer survivor, 66
22

About Making a Difference in 

Everyday Ways

There are many ways you can make a difference in the lives

of others. This chapter looks at how you can make a

difference in everyday ways, like helping someone with

household chores, learning and teaching, sharing your

experiences, or helping others through the health care system. 

Helping With Everyday Activities

You can make a big difference by helping in small ways.

This includes everyday activities such as chores and

errands. For example, you can:

• Bring a meal, do an errand, or mow someone’s lawn

without being asked.

• Help people with their grocery shopping or household

chores, or offer to baby-sit or take care of their pets.

• Drive people to their doctors’ appointments. This can be a

big help, especially when people have to travel a long

distance.

• Arrange meals for someone who is sick. “We decided to help

organize meals after our neighbor got five pans of lasagna in

one day,” said a friend of someone with colon cancer.

• Do small things for others that you would have liked

people to do for you, like taking the kids out for a day or

renting some videos. 

• Let people know how they can learn more about cancer.

For example, you can tell them about the National Cancer

Institute or a local cancer organization. Many of these

groups are listed at the back of this book. (See pages 71-93

for more information.)

What if I find

that I talk too

much about

myself?

If you find that

you are

thinking and

talking too

much about

yourself and

not enough

about others,

you may not be

ready to get

involved right

now. People

need time to

deal with their

feelings and

make sense of

their cancer

experience.

You may want

to get help for

yourself and

talk with a

counselor

about your

feelings and

concerns. 

?
W AYS Y O U C A N M AKE A D IFFERENCE 23

Sharing Your Experiences

“It took me 3 years to set up a local

survivors’ group in my native

community. My support group started

with two people in my home and grew to

ten. I think it is important to support

people so that they can heal and recover.” 

Lahoma, bone cancer survivor, 55

If you are reading this book, you probably know a lot about cancer. Your

experience can help others who are struggling. Here are some ways you

can help:

• Offer to be a “buddy” to someone who is dealing with cancer. You

can do this in person, by telephone, or even over the Internet. 

• Tell others with your same diagnosis about the treatment choices you

made and why you made the decisions you did.

• Help people get ready for their doctors’ appointments by making lists

of concerns they want to talk about. 

• Talk to others about how you told your boss and coworkers that you

have cancer. 

• Ask how you can be helpful to the family and friends of someone

who has cancer. Let them know that you care and are ready to listen,

help, and share ideas.

• Think about volunteering to be a “peer counselor” (someone who is

trained to help others with the same type of experience or

diagnosis). Some cancer organizations recommend, or even require,

that people be out of treatment for at least a year before they

volunteer as peer counselors.

• Get involved with, offer to co-lead, or start a cancer support group in

your local area.
24

When you learn about cancer, you not only help yourself,

but you can also help others by sharing what you know. For

example, you can learn about your rights as a person with

cancer and teach this to others. Here are some ways to get

started:

By phone 

Many national cancer organizations have toll-free phone

numbers you can call. They can answer your questions or

send you books with more information. Sometimes cancer

organizations even offer educational programs conducted

over the telephone. See pages 71-97 for groups to call.

In print

There is a lot of written information about cancer. This

includes magazines, newspapers, booklets, and books.

Some of these print materials are written for the general

public, while others are more for health professionals and

scientists. Visit your local library or hospital resource center,

or ask your doctor or nurse about up-to-date materials that

are written at a level you can understand. 

Sharing What You Learn About Cancer

“There’s a new study published

every day. I want to keep up

with the information my wife

needs.” 

Harold, husband of a 63-year-old

breast cancer survivor
W AYS Y O U C A N M AKE A D IFFERENCE 25

Over the Internet

Many people search for cancer information on the Internet. For

example, many organizations have Web sites you can go to for the

latest information about cancer. You might want to subscribe to

an organization’s e-mail list and get messages when the site is

updated. Some Web sites also offer listservs or chat rooms where

people can meet each other on line. These are ways that people

interested in cancer can exchange messages about their

experiences, concerns, and resources. See pages 71-97 for

Internet sites. (To learn more about the Internet, see page 65 for

“Using the Internet for Medical Advice.”)

Going to meetings, workshops, or classes

Many people help themselves as well as others by going to meetings,

workshops, and classes. They can learn about clinical trials, a new

approach to relaxation, or how to deal with other problems long

after treatment is over. Ask your local hospital or cancer center about

cancer-related programs they offer the general public. Often, you can

attend these programs for free or at a low cost. 
26

Working With Others in 

Your Own “Backyard” 

You don’t have to travel a long distance to help

others. In fact, there are many ways you can make a

difference in your own “backyard”—where you live,

work, go to school, or worship. You can talk with

people about cancer and keep them up to date with

the latest facts and information. Tell them about your

experience with cancer and help them learn more.

For example, you can:

• Bring cancer brochures to your workplace, school, or place of

worship. You may be able to get brochures from cancer organizations

such as the ones listed in the back of this book. 

• Tell people about a cancer screening day, or help organize one. 

• Organize a team for a cancer fundraising event, such as a walk or

run in your community.

• Start a support group for people affected by cancer. There may be

some people where you work or go to school who want to talk about

their ideas, feelings, and experiences with cancer.

• Ask your employer, school, or place of worship to make a donation,

sponsor a cancer-related event, or offer cancer screening tests.

• Write an article about cancer for your school or workplace newsletter

or a local newspaper. 

• Find ways to help make your workplace easier for people with

cancer or other health

problems.

• Help people understand their

legal rights as cancer survivors

(see page 94). 
W AYS Y O U C A N M AKE A D IFFERENCE 27

What if people ask me questions that 

I can’t answer?

People will ask you questions about cancer, and

sometimes you won’t know the answer. It’s okay to say, “I

don’t know,” but let the person know that you will try to

learn the answer. One way you can learn more is by

contacting a cancer organization by phone, e-mail, or

letter. (See pages 72-93 for a list of cancer organizations.)

Ways Others Have Helped in Their 

Own “Backyards”

• Members of a cancer support group were trained to

help at a local hospice. They gave comfort to patients

during their last days and showed kindness to their

friends and family members.

• Older, trusted members of one community reached out

to their neighbors about cancer screening. Known as

“lay health advisors,” they encouraged other older

adults to get screened for cancer.

• A hospital organized a “Patient Navigator Program” in

which survivors helped people who had cancer but did not

have health insurance. They worked together throughout the

person’s cancer treatment. 

• Some groups have found ways to help others who share their

faith, background, or culture. A group of African-American

women with cancer organized a support group to deal with

their unique needs. And a local church started a program to

spread the message about the importance of early breast

cancer detection.

?
28

Talking With Doctors, Nurses, and Other

Health Care Providers

If you are a cancer survivor or are close to someone who has

or has had cancer, you know what it is like to talk with

doctors, nurses, and other health care providers. You may

have learned how to speak up and ask questions—and you

can use your experience to help others. For example, you can:

• Let people know that they should talk with their doctor

about all their concerns—even the little ones that do not

seem important.

• Help patients and their families get ready for medical

appointments. You can suggest that they:

• Write a list of their questions and bring it with

them when they see the doctor. 

• Bring a paper and pen to take notes about what

the doctor says. 

• Suggest that patients and their families invite someone

to go with them to their appointments. This can be a

family member, friend, or volunteer. 

• Make sure that all health care providers treat everyone

with respect. This includes respecting not only people

with cancer, but also their families and loved ones. (See

“The Cancer Survivors’ Bill of Rights” on page 67 for

more information.)

• Volunteer at hospice programs, helping people through

their last days.

• Join a Patient and Family Advisory Board. Hospitals and

cancer centers often want survivors and their families to

help them develop new programs. When you are on a

Patient and Family Advisory Board, you may be asked to

give advice on policies and programs and let the

organization know how it can improve care for all

patients.
W AYS Y O U C A N M AKE A D IFFERENCE 29

Keep in Mind

If you offer to go to a doctor’s appointment with someone,

make sure you agree on what he or she would like you to

do. Ask the patient ahead of time if you should: 

• Stay in the waiting area or go into the exam room. 

• Ask questions or help explain any words or terms

the patient doesn’t understand.

• Bring paper and pen or a tape recorder to take

notes. You can offer to take notes about when to

come back for an appointment or how to take a new

medication.

Ways to Get Started—

Helping Others in Everyday Ways

Once you decide that you want to make a difference in

everyday ways, find out who needs your help and what

you can do to get started. Here are some ideas about

ways to begin: 

• Let people know that you want to help others. Tell your family,

neighbors, coworkers, and even your doctor that you want to get

involved in cancer-related activities. Talk with them about things you

like to do and ways you want to help. Ask for their ideas and

suggestions. Make sure to let them know when and how you have

decided to help.

• Find out about volunteer programs where you live. Check

with your local hospital or cancer center, clubs, senior centers, and

places of worship to see if they have programs to help people with

cancer. If any of these groups have volunteer programs, ask how you can

get involved. If there isn’t a program nearby, think about starting one. 
30

• Look in your local newspaper for volunteer

opportunities. Many newspapers, libraries, and

community centers have lists of organizations that need

volunteers. You can also find the names and addresses of

cancer-related organizations at the back of this book.

(See pages 72-93 for more information.) 

• Get involved with a cancer organization. Contact

a cancer-related group that interests you. Talk with the

person in charge of volunteers about your interests and

experiences. He or she might suggest that you get

involved with a cancer support group, telephone hotline,

or patient education program. (For more information, go

to the tab: Cancer-Related Organizations.)

After you

have worked

with others in 

everyday

ways for a

while, think

about how

you liked this 

experience.

One way is to

fill out 

the Guide on

page 63,

“Thinking

About Your

Choices:

A Guide.”

33

After 8 years, I

am still

volunteering ...

I have made

some wonderful

friends—they

often know what

I am feeling

before I even say

it because they’ve

been where I am.

We helped raise

money for cancer

research that, I

hope, someday

will lead to a

cure. 

“My oldest sister, Elizabeth, was diagnosed with lung

cancer 10 years ago. From the moment she found out

she had cancer, she knew it was bad. She had chemo,

radiation, and part of her lung removed—and still her

cancer came back. She died when she was 59 years old,

three days after her grandson’s first birthday.

During Elizabeth’s illness, I felt angry, sad, powerless,

and frustrated. I went around like this until someone

showed me an ad for a local organization that was

raising money for cancer research. I thought, ‘Here is

another group asking for money I don’t have.’ But I read

more, and the ad said they were looking for volunteers

to help out at their office. I’m not sure why I decided to

call them or what made me go down there, but I did. 

Someone asked me to start stuffing envelopes, and that’s

how I got started. That first night there were about 20

of us helping to get ready for an event. Some people

were making posters. One man was on the phone taking

pledges. Another lady was trying to get the caterer to

lower its prices.

I was hooked right away. I knew this was a way to

channel all my feelings of anger, helplessness, and

hopelessness into something good. I was with other

volunteers who also were cancer survivors and knew

what I had been through.

After 8 years, I am still volunteering with that group.

Why do I do it? I have made some wonderful friends—

they often know what I am feeling before I even say it

because they’ve been where I am. We helped raise

money for cancer research that, I hope, someday will

lead to a cure. 

While it will not help my sister, I do this work to honor

her memory.” 

Carol, lost a sister to lung cancer, 57
34

About Making a Difference with 

Cancer-Related Organizations

The last chapter described how you can make a difference 

in everyday ways. This chapter looks at how you can help by

working with cancer-related organizations. Cancer-related

organizations include many different kinds of groups that

find ways to help people with cancer—and many of them

need the help of volunteers. Many of these groups are 

listed in the back of this book, starting on page 72. 

Some cancer-related organizations serve only their local

communities, while others help people in certain regions of

the country. National organizations serve people all across

the United States. 

Cancer organizations can focus on different areas:

• All types of cancer

• Just one type of cancer

• The needs of people from a specific racial or ethnic

group, religion, or culture

• The needs of family members or other people who take

care of those with cancer

Cancer-related organizations offer many different kinds of

services: 

• Service and support 

• Awareness and education

• Fundraising

• Advocacy 
W AYS Y O U C A N M AKE A D IFFERENCE 35

Keep in Mind

Think about your interests, and decide if you want to

volunteer with a cancer-related organization that helps

people who:

• Have one type of cancer

• Have different types of cancer

• Share your background

• Live in your area

• Live across the United States
36

Working With Service and Support Organizations

“When I was in treatment, I had trouble

finding people like me to talk to. I finally

found a local group that was working to

help other Hispanic women and lesbians

deal with and understand cancer—to give

them someone to talk to. So that’s where

I started volunteering.” 

Consuelo, ovarian cancer survivor, 51

Service and support organizations make sure people don’t have to face

cancer alone. They offer help to survivors, caregivers, and people who lost

someone to cancer. These groups provide services such as:

• Telephone hotlines. In these programs, volunteers are trained to

be hotline counselors: people who give easy-to-understand

information over the phone. Hotline counselors also are trained to

be good listeners and support other people as they talk about their

feelings and concerns. Some hotlines let volunteers take calls in their

homes.

• Cancer support programs. These programs give emotional

support to people with cancer and their families. They also help by

giving people items they need, such as wigs, scarves, breast forms,

and books. 

• Other types of support. These include help with medical

services, including referrals for second opinions or specialists. They

also include legal services as well as practical help people need, like

rides to medical appointments. 
W AYS Y O U C A N M AKE A D IFFERENCE 37

Ways to Get Started—

Service and Support Programs

•Donate items cancer patients need, like wigs,

scarves, and breast forms.

• Provide office help such as answering phones

or stuffing envelopes.

• Volunteer to drive people to their doctors’

appointments.

• Join a support group, or offer to lead one.

• Get trained to work as a hotline counselor. 

• Join a committee that helps plan programs, or

let others know about services.
38

Working With Awareness and

Education Organizations

Cancer organizations also work hard to raise

awareness about cancer. They do this by letting

people know that cancer can affect anyone and

giving people facts and figures about the disease.

Cancer organizations also invite people to join

them in the fight against cancer.

Organizations also educate people about cancer.

This includes teaching people about cancer screening tests,

ways to reduce cancer risks, and tips for healthy living.

Organizations want to get this message out to as many people

as they can. They often give workshops and presentations at

schools, workplaces, places of worship, health fairs, and even

over the Internet.

Ways to Get Started—

Awareness and Education Programs

• Provide needed help around the office.

• Help at local health fairs and community events.

• Give your family, friends, and coworkers information about

cancer. Ask them to help you teach others about this disease. 

• Think of new ways to let people know about cancer. Find

booklets and brochures about cancer you think people will

read.

• Organize a cancer screening in your community.

• Learn how to teach a session about cancer at your workplace

or in your community group. 

• Join a committee that plans new programs or lets others

know about your work.
W AYS Y O U C A N M AKE A D IFFERENCE 39

Working With Fundraising Organizations

Cancer organizations all need to raise funds (get money) in

order to provide the services people need and want. Many

groups also raise money for cancer research. 

Fundraising is often done through events such as races or

shows. These events not only bring in money, but also raise

awareness about cancer and give hope to the people who

participate.

Types ofFundraising Events

There are many kinds of fundraising events. They may raise

money for cancer screening, outreach, education, or

research. Here are some examples:

• Walks, runs, and races. Many of these events take

place on weekends; some take 2 or 3 days to

complete. 

• Activities like golf, bowling, cycling, and dancing.

• Luncheons, dinners, and fashion shows.

• Plays and concerts.

Ways to Get Started—

Helping With Fundraising Events

• Look for events in the newspaper or through

a local group (many of the national

organizations on pages 72-93 have local

groups or chapters).

• Take part in the event, and encourage others

to do the same.

• Buy a ticket or make a donation to the event.

• Donate food or items for raffles or auctions. 

• Sponsor someone to take part in a race or

game.
40

Keep in Mind

What you should know about fundraising events:

• Every organization that raises money needs to publish

its budget and annual report. The organization has to

state where the funds go and how much is given to

cancer-related activities. 

• Find out ahead of time how the organization plans to

use the money you raise. You might want to ask: 

• How will the money be spent? 

• Who decides how the money will be spent?

• What percent of the money goes to program

costs and office expenses? 

• Does the event support all types of cancer or just

one type?

• Does the money stay in the community or go to

a national organization?

• Help before the event by:

• Stuffing envelopes or hanging signs.

• Doing the artwork for an invitation.

• Asking your local newspaper or radio station to

announce the event.

• Putting up posters, handing out fliers, or sending e-mail

messages to people who may want to attend. Ask people

to forward this information to their family and friends. 

• Help on the day of the event by setting up, cleaning, or

decorating.

• Help after the event by thinking of new ways to raise money

and finding volunteers to work on these events.

• Organize a fundraising event in your community.
41

Advocacy (or advocate) means to support, speak in favor of, or recommend

a specific cause. For example, cancer organizations advocate by: 

• Helping people with cancer get the care they need, even if they do

not have health insurance or cannot pay for it.

• Protecting people from discrimination (being treated unfairly)

because they have cancer or other health-related problems.

• Raising awareness about cancer, and teaching people about the need

for more services, education, and research.

Working With Advocacy

Organizations

“We’ve educated elected officials about

our struggles with cancer ... and I’ve

gotten my support group to gather lots

of signatures on our latest petition

drive. It makes me feel that I am

making a difference for others who are

going to face this disease.”

Kelly, Hodgkin’s disease survivor, 42

Ways to Get Started—

Advocacy

• Become an active, involved citizen, and

consumer. For example, you can lead a city, state, or

regional effort to get more people involved in cancer

policy issues. You can also speak about these issues at

meetings, health fairs, and other public events. 

• Get to know your elected officials and talk with

them about your cancer concerns.

• Sign a petition on cancer issues. Advocacy groups

often use petitions as a way to bring attention to cancer

issues.
42

Ways to Get Started—

Cancer-Related Organizations

• Learn about what types of activities interest you. The Guide

on page 15 can help you think about the kinds of activities

you like to do and are good at.

• Find cancer-related organizations by going to the list starting

on page 72. Many of these groups have local chapters. You

can also find local groups by calling your local hospital,

searching the Internet, or asking a friend, neighbor, or

someone at your doctor’s office.

• Contact organizations that interest you and ask for

information about their programs. Start by going to one of

their events or talking with someone who organizes

volunteers. See if there is a “good fit” between your interests

and what they do. 

After you have worked with a cancer-related organization

for a while, think about how you liked this experience. One

way is to fill out the Guide on page 63, “Thinking About

Your Choices: A Guide.”

• Join an advocacy committee and see

what kind of help they need. They may ask you

to make phone calls, write letters, or organize

an event. If there is not a group near you,

think about starting one, or see if you can help

by phone or e-mail. 

• Sign up to receive cancer “alert”

announcements. Many advocacy groups

mail, fax, or e-mail alerts about important

cancer issues. Keep up to date, and ask your

friends and neighbors if they want to get this

information as well.

45

I tell everyone

that if you

want to take

an active role

in deciding

your treatment,

learn about

clinical trials

and decide if

they’re right

for you.

“I found out I had cancer 6 years ago, just after my 45th

birthday. I started learning as much as I could about my

cancer. I wanted to know about all my treatment

options. I am lucky because my wife’s best friend is a

nurse. She told me that for many cancers, some of the

best treatments are clinical trials. I remember I said, ‘Are

you crazy? I’m not going to be anybody’s guinea pig.’

Then she told me, ‘Don’t close your mind to this before

you know all the facts. Sometimes clinical trials can offer

the best treatments available.’

So I found out everything I could about clinical trials.

My doctor and I talked about this together, and she

referred me to a trial. After a lot of thought and talking

it over with my family, I decided to sign up. That’s how I

got my cancer treatment. 

I’ve been out of treatment for about 4 years now, and so

far, things look good. I am not saying that clinical trials

are right for everyone. I’m not even saying I’m cured. I’m

just saying I got informed and learned about all my

options.

I tell everyone that if you want to take an active role in

deciding your treatment, learn about clinical trials and

decide if they’re right for you. I help people understand

that they’re not ‘guinea pigs’ when they take part in a

trial.

Clinical trials helped me. But more than that, I feel like I

am helping others who may someday get cancer. Maybe

my decision to take part in a clinical trial will help

improve treatment for others. Maybe my story will help

others find the treatment they need. I know that my

cancer experience is not in vain.” 

Chris, colon cancer survivor, 51
46

About Making a Difference in 

Cancer Research

Research is the key to improving treatments for cancer. The

more people take part in clinical trials, the faster we can

answer important research questions, leading to better

treatment and prevention options for all cancers.

Cancer research takes place at hospitals, universities,

government facilities, and private companies. There are many

ways you can get involved with research: taking part,

encouraging others to do so, and helping to influence how

research is done. 

Taking Part in Cancer Research

Clinical trials are research studies in which people help doctors

find ways to improve cancer care. Each study tries to answer

scientific questions and find better ways to prevent, diagnose,

or treat cancer. 

Cancer treatment clinical trials test whether a new drug or

procedure is effective, but there are many other kinds of

clinical trials and types of research studies you can take part

in. For example, there are:

• Clinical trials that focus on cancer prevention, cancer

screening, and quality of life.

• Research studies that ask survivors and their families

to fill out surveys or take part in interviews. These

studies focus on understanding more about:

• The things people do or are exposed to that may

affect their health.

• How cancer and its treatment affect their lives.

• The medical costs of cancer and its treatment.
Influencing Cancer Research

“My 13-year old son died of cancer. So, I

have a unique viewpoint that I can share

with other parents and scientists. I

learned that research is where the

answers are—like how new treatments

get to the clinics for kids. I have also

become an advocate and use my skills to

help doctors and scientists understand

what parents of children with cancer go

through.” 

Juana, lost her son to cancer, 53

W AYS Y O U C A N M AKE A D IFFERENCE 47

Doctors and scientists take a lot of time to design a study before the

research can start. They need to decide what topics to research, how the

research will be done, and how it will be funded. 

It’s not just doctors and scientists in lab coats who need to think about

these issues. 

People who have had cancer and others who are concerned about cancer

(often called consumer or patient advocates) are beginning to have a

voice in how research is funded. Consumers bring an important point of

view to the research process. They explain what is really important to

people who have cancer. They also help scientists think about what it is

like for patients to take part in cancer research. 

Taking part in a research study—after learning everything you need to

know about it—is an important way you can give to others and, perhaps,

help yourself at the same time. You can also make a difference by telling

others about how they can participate in clinical trials. 
48

Whether sponsored by a private organization, a state

government, or the Federal Government, cancer

research programs must review applications to decide

which projects to fund. For example:

• Many foundations raise money for cancer research,

education, and outreach programs and then award

funds to projects they feel are worthy.

• Many states, as well as the Federal Government,

run programs in which they award funds to

scientists for cancer research.

Many of these programs invite consumers to join committees

that help decide which research gets funded. Consumers can

bring a community perspective to these important decisions. 

By serving on these committees, consumer reviewers help

advocate for:

• Innovative research studies that will benefit patients

sooner and more effectively

• Improved medical care

• Improved quality of life for patients, survivors, and their

families

There are many different programs that seek consumer input

into what research gets funded. (See the list on pages 51-52;

many organizations on pages 71-93 also have funding

programs).

Joining an Institutional Review Board

Another way you have an influence in research is by joining an

institutional review board (IRB) at your local hospital, cancer

center, or university. An IRB is made up of doctors, nurses, and

people from the community. Its job is to review research studies

and make sure they are run in a manner that is safe and fair.

IRB members also look at informed consent documents and

make sure they are easy to understand and have all the

information people in the study need to know.
W AYS Y O U C A N M AKE A D IFFERENCE 49

Ways to Get Started—

Cancer Research

If you are interested in cancer research, here

are some ways you can get started.

To learn more about clinical trials:

• Contact the National Cancer Institute (NCI) to find out

more about clinical trials. For example, you can:

• Learn more about how clinical trials have helped

find better treatments for people with cancer.

• Find out how you can teach others about

participating in these studies.

• Find out where clinical trials are taking place in

your area.

You can find more information about clinical trials on

pages 51 and 71.

• Talk to your doctor about clinical trials in your area.

Some of these studies may also be listed in your local

newspaper. 
50

To learn more about influencing cancer research:

• Contact the research office at your local hospital,

university, or cancer center. Ask to speak with the

researchers to learn more about their work. 

• Learn about research in your community by visiting the

NCI Research Portfolio Web site at: 

http://researchportfolio.cancer.gov. 

You can search this site by state, institution, or name of

researcher.

• Contact your state’s health department and ask about the

cancer research programs it funds. Find out which studies

are looking for consumers to get involved.

• To find local cancer programs, look in your telephone

book under “Departments of Health” or “Health

Departments.”

• Find out about the private foundations in your area that

fund cancer research, and ask if they would like consumer

input. (To learn more, go to the list of cancer

organizations starting on page 72.)

• Call or write the Federal Government programs at the

numbers listed on the next page, and ask for an

application to be a consumer or patient representative. 
W AYS Y O U C A N M AKE A D IFFERENCE 51

Government Program Description

National Cancer Institute

Consumer Advocates in

Research and Related Activities

(CARRA)

NCI Liaison Activities (LA) Branch

6116 Executive Blvd., 3068A

Bethesda, MD 20892-8324

Tel: 301–594–3194

http://la.cancer.gov/carra

E-mail: liaison@od.nci.nih.gov

The Consumer Advocates in Research and Related

Activities (CARRA) program encourages people affected

by cancer to provide their viewpoints and ideas directly to

NCI staff so that the NCI can incorporate their

perspectives into its programs and activities. CARRA

members represent many different cancer types, age

groups, and ethnic groups from across the nation. In

addition to participating in NCI activities, CARRA members

represent the opinions of their groups and play critical

roles as two-way information links between their own

communities and constituencies and the NCI.

CARRA members meet directly with NCI staff. They may:

• Review proposals during scientific peer review.

• Participate in meetings about NCI research plans and

policies.

• Develop and review health promotion messages. 

Clinical trials are often conducted through NCI Clinical

Trial Cooperative Groups, which are networks of

institutions that jointly carry out large clinical trials.

Members of these groups include:

• University hospitals

• Cancer centers

• Community doctors and community hospitals

There are ten cooperative groups; some focus on type of

cancer, others on type of treatment, and at least one on

age of participants. Other groups are regional or focus on

several cancer types.

Cooperative groups seek the input of patients in their

committees and working groups. Some patient advocates

may be involved in developing research plans (called

protocols); others may help develop informed consent

forms; and others are involved in advising on policies or

priorities. The application process is different for each

cooperative group.

Federal Government Programs That Welcome

Consumer Involvement 

Clinical Trial Cooperative

Group Program 

See the Cooperative Group

Program link on the Web site by

going to http://ctep.cancer.gov,

and following the links on your

screen. Or call the National

Cancer Institute’s Cancer

Information Service at 

1–800–4–CANCER to request a

fact sheet that lists cooperative

groups.
52

Government Program Description

U.S. Department of

Defense

Congressionally Directed

Medical Research Programs

(CDMRP)

Congressionally Directed Medical

Research Programs

ATTN: Consumer Recruitment

1077 Patchel Street

Fort Detrick, MD 21702-5024

Tel: 301–619–7079

http://cdmrp.army.mil

E-mail: cdmrp.consumers@det.

amedd.army.mil

Currently, the CDMRP oversees research programs in

Breast Cancer, Prostate Cancer, Ovarian Cancer, and

Chronic Myelogenous Leukemia. In these programs,

Consumer Reviewers take part in reviewing research

proposals along with scientists (called “peer review”).

Consumer Reviewers:

• Represent the collective views of survivors,

patients, family members, and persons affected by

and at risk for a disease. 

• Read and evaluate research study proposals for

relevance to the consumer community's needs and

concerns. 

• Actively participate in the discussions and decisionmaking process of peer-review panels. 

• Participate equally with scientists as full voting

members. 

After you have worked in cancer research for a while, think about how you

liked this experience. One way is to fill out the Guide on page 63, “Thinking

About Your Choices: A Guide.”

55

“I found out I had prostate cancer over 10 years

ago. During treatment, I got involved in a local

support group for prostate cancer survivors. The

more I talked with the other men in my group,

the more I saw how little most of us knew about

the disease. I made it my mission to help men

learn as much as they could about prostate

cancer.

I started out talking about getting screened for

cancer to the men I knew—my family, friends at

church, and my neighbors. Then I started going

to prostate cancer meetings so I could get

information to take back to my community. 

Later on, someone nominated me to be on a

government committee about funding for

prostate cancer research. Since then, I have been

on lots of government committees to help make

decisions about cancer research. When I’m

working with these groups, I speak for the men

back home and all the other men who also face

prostate cancer. 

The way I see it, we have to play a role in our

government. You can’t just sit in front of your TV

and complain. If you don’t make a change, then

who is going to do it? The bottom line is that

you have to get out there and make a

difference.”

Jim, prostate cancer survivor, 65

The way I see it,

we have to play

a role in our

government. You

can’t just sit in

front of your TV

and complain. If

you don’t make

a change, then

who is going to

do it?
56

About Making a Difference in Government

Programs and Policies

Survivors and their families can make a difference in the types

of programs the government offers to people with cancer (or

people at risk for developing cancer). They can bring an

important community perspective to government programs. 

Government programs often seek advice about how best to

develop cancer screening programs, approve new medicines, or

develop new research priorities.

Working With Local and State Government 

Cancer Programs 

Many local, county, and city health departments have cancer

education, awareness, and screening programs. To ensure that

programs work well, these departments often ask survivors and

their family members to get involved. For example, a local

health department might ask for advice about a cancer

screening program or a new brochure.

States also offer programs to reduce cancer deaths and

improve cancer care. These programs may focus on cancer

education, prevention, early detection, or treatment. For

example, a state may run a program educating older men

about prostate cancer. These state programs may need help

finding the names of local organizations to work with them.
W AYS Y O U C A N M AKE A D IFFERENCE 57

Working With National Government 

Cancer Programs 

Just as local governments need the

advice of consumers, the Federal

Government has several programs that

seek the advice of cancer survivors

and their families. Several programs

are described below. 

Government Program Description

National Cancer Institute

(NCI)

Consumer Advocates in

Research and Related

Activities (CARRA)

Director’s Consumer Liaison

Group (DCLG)

Liaison Activities Branch 

6116 Executive Blvd., 3068A

Bethesda, MD 20892-8324

Tel: 301–594–3194 

http://la.cancer.gov 

e-mail: liaison@od.nci.nih.gov 

The National Cancer Institute seeks consumer

input and feedback on many of its policies and

programs. 

The CARRA program is described in more

detail on page 51.

The DCLG is the all-consumer advisory group

for the NCI. Consumers look at a range of

issues, programs, and research projects and

make recommendations based on their

consumer perspective. There are 15 consumer

advocates on the DCLG, each serving a 3-year

term. They are chosen to reflect the diversity of

those whose lives are affected by cancer. 

To learn more about the DCLG (including a

membership roster and meeting summaries),

go to the NCI Web site at www.cancer.gov, click

on “About NCI,” and then select “Advisory

Boards and Groups.”
58

Food and Drug

Administration (FDA)

Cancer Drug Development

Patient Consultant Program 

Office of Special Health Issues

(HF-12)

Food and Drug Administration

5600 Fishers Lane 

Rockville, MD 20857

Tel: 301–827–4460

http://www.fda.gov/oashi

e-mail: oshi@oc.fda.gov

Cancer Patient Representative

Program 

(Address same as above)

Government Program Description

Several FDA programs have patients and

consumers on their scientific and technical

advisory committees. Training is provided to

people who are selected. 

This program provides cancer patient

advocates an opportunity to participate in the

FDA drug review regulatory process. Patient

advocates serve as patient consultants in the

preapproval, clinical trial phase of cancer drug

development. Patient consultants provide

advice to the FDA and drug sponsors on

topics such as clinical trial design, endpoint

determination, expanded access, protocol

development, and clinical trial patient

recruitment strategies.

This program provides the FDA and its

advisory committees the unique perspective of

patients and family members directly affected

by a serious or life-threatening disease.

Patient Representatives serve on advisory

committees when a product or therapy (drug,

biologic, or medical device) related to a

serious or life-threatening disease is under

review. Patient Representatives must be well

informed about patient concerns and have the

ability to understand and actively participate in

advisory committee discussions. 
Government Program Description

W AYS Y O U C A N M AKE A D IFFERENCE 59

Food and Drug

Administration (FDA)

Consumer Representative

Advisory Committees

Food and Drug Administration

Advisory Committee Oversight

and Management Staff (HF-4)

5600 Fishers Lane, Room 16-85

Rockville, Maryland 20857

Tel: 301–827–1220

Ways to Get Started—

Government Programs

Decide if you want to get involved at the local, state, or

national level. You may want to start out in your home

county or state.

If you think you may be interested in local cancer

programs, a good way to start is by speaking with the

person in charge of cancer-related programs at your local

health department. Ask for information about the programs

they offer and find out how you can help.

• To find local cancer programs, look in your telephone

book under “Departments of Health” or “Health

Departments.”

These committees seek input from consumers

on medical and scientific issues. Consumer

representatives must be able to analyze data,

understand research design, discuss benefits

and risks, and evaluate the safety and

effectiveness of products under review.
60

After you have worked in government programs and policies for a

while, think about how you liked this experience. One way is to fill out

the Guide on page 63, “Thinking About Your Choices:

A Guide.”

If you think you may be interested in state cancer programs,

you can speak to someone who works on cancer in your state health

department. Ask for information about their programs and find out how

you can help. 

• To find cancer programs run by state governments, contact: 

U.S. Centers for Disease Control and 

Prevention (CDC)

Tel: 1-888-842-6355

http://www.cdc.gov/cancer/ncccp/contact.htm

If you think you may be interested in national programs:

• Learn more about the programs listed in this section by calling,

writing a letter, or looking at their Web sites. 

• Request applications for the programs that interest you. Even if you

find they are not right for you, you can share them with others. 

W AYS Y O U C A N M AKE A D IFFERENCE 63

A Guide

Thinking About

Your Choices:

After you’ve done some work in cancer-related activities,

think about the choices you made. Then, answer the

questions below.

1. What did you do to make a difference in

cancer?

EXAMPLE: 

I called my local cancer center volunteer office; found out

about a training to help other survivors; went to the training

and was a buddy to two men diagnosed with prostate

cancer.

__________________________________________________________________

__________________________________________________________________

__________________________________________________________________

2. Did you find this was the right time for you to 

get involved?

❑ Yes ❑ No

If NO, think about waiting a little while and trying again.

If YES, answer the next questions:
64

3. What did I like best?

–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––—

4. What did I like least?

–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

–––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––

5. Do I like doing this work?

❑ Yes ❑ No

If NO...

If you don’t like this activity or organization, think

about changing what you are doing. For example: 

• If you are working on your own, think about

working with an organization.

• If you are working with an organization, think

about working on your own.

• Switch to another area of interest.

• Switch to another organization.

If YES...

If you like what you are doing, you can: 

• Keep doing it.

• Decide whether you want to do more. Read

this book again and find other activities that

interest you. 

It may take

some time to

find the activity

you like best.

Sooner or later,

you will find an

activity that is

the right match

for you. 

Remember to

slow down. You

need to take care

of yourself before

you can make a

difference in the

lives of others. 
W AYS Y O U C A N M AKE A D IFFERENCE 65

Using the Internet for Medical Advice

The Internet is a tool many people use to find medical information and

advice. This includes Web sites as well as online discussion groups such as

listservs and chat rooms. 

The Internet can be a valuable source of information

about cancer. But sometimes Internet information can

be false, unreliable, or misleading. Don’t believe

everything you see on the Internet. Talk with your

doctor about the medical advice you find and make

sure the information makes sense for you. 

Here are eight questions to keep in mind when using

the Internet for medical advice. 

1. Who runs this site?

All Web sites should include the name of the organization that sponsors

(pays for) it, as well as the person who runs the Web site. 

2. What is the purpose of the site?

The purpose (or goal) of the site should be clearly stated. You can often

find this by clicking on a link that says, “About This Site,” or similar

words. 

3. Who pays for the site?

It costs money to run a Web site. Find out if the site includes

advertisements such as “banner ads.” Think about the company that pays

for the site; they may only want you to know about their services or

products. 

4. Where does the information come from?

Many Web sites include information from other sources. The Web site

should make clear where information comes from. All medical articles

should have a list of references where you can go to learn more. Opinions

and advice should be clearly labeled and set apart from information

based on research results.
66

5. How is the information selected?

Is there an editorial board? Do people with good

medical qualifications review the material before it is

posted?

6. How current is the information?

Web sites should be reviewed and updated on a

regular basis. It is important that medical information

be current and that its most recent update or review

date appears on the site. Even if the information has

not changed, you need to know that the site “owners”

have reviewed it recently to make sure the

information is still correct.

7. How can users contact the Web site

“owners”?

There should always be a way for you to contact the

site owners with problems, feedback, and questions.

8. How does the chat room or discussion

area work?

If the site has a chat room or other online discussion

areas, it should tell you how the service works. Is it

led by someone? By whom, and why? It is always a

good idea to spend time reading the discussion before

joining in, so that you feel comfortable with the

environment before you get involved.

What if I do not

have access to the

Internet at home?

Your local library,

school, or university

may have

computers that the

general public can

use to access the

Internet. Call ahead

and ask if they can

help you get on line.

You can still get

cancer information

even if you do not

have access to the

Internet. Call 

1-800-4-CANCER

(1-800-422-6237)

and ask them to

mail you cancer

information. You

can also ask your

doctor, library, or a

family member or

friend to help you

find cancer

information.

?
W AYS Y O U C A N M AKE A D IFFERENCE 67

The Cancer Survivors’ Bill of Rights

(Excerpts from the National Coalition of Cancer Survivorship’s Survivors’

Bill of Rights. NOTE: This is not a national law.)

The National Coalition for Cancer Survivorship presents this version of the

Survivors’ Bill of Rights to call public attention to survivor needs, to enhance

the quality of cancer care, to empower cancer survivors, and at the same

time bring greater satisfaction to them and their physicians, employers,

families and friends.

Survivors have the right to continuous lifelong medical care, as needed.

The physicians and other professionals involved should make every effort

to be:

• Sensitive to cancer survivors’ lifestyle choices and their need for selfesteem, dignity and privacy of the information trusted to them;

• Careful, no matter how long these patients have survived, to take

symptoms seriously, and not to dismiss aches and pains, for fear of

recurrence is a normal part of survivorship;

• Vigilant to watch for any long-term and late effects of cancer and its

treatment in followup clinics and offices;

• Informative and open, providing survivors with as much or as little

candid medical information as they wish, and encouraging informed

participation, but not expecting survivors to manage that care on

their own;

• Knowledgeable about counseling and rehabilitation resources and

willing to refer survivors and their families as appropriate for

emotional support and therapy aiming to improve the texture as well

as the quantity of time that is theirs to live.
68

No matter in which setting their care is offered—be it fee-for-service or

some sort of managed care system—survivors have the right to quality

care emphasizing:

• Informed choice—choice of the setting in which care is delivered,

choice of primary physicians and specialists delivering that care, as

well as choice of appropriate, effective and safe treatments

(including ongoing clinical trials);

• Efficient yet humane management of such unfortunate by-products

of disease as fatigue and pain—pain control management for

example, which approaches survivors more as partners in identifying

the proper amount of medication needed at any given time than as

potential drug addicts;

• Appropriate use of hospital and other facilities, wherein cost

effectiveness and patient-centered care are balanced so that no

survivor is dismissed—after a mastectomy, for example—unable to

care for her or himself or secure the care needed to avoid dangerous

and painful situations;

• Constant respect for survivors’ wishes as to when and how to

discontinue treatment should that time arise, including the

scrupulous honoring of “living wills” and similar documents.

In their personal lives, survivors, like other Americans, have the right to

the pursuit of happiness. This means they have the right:

• To talk with their families and friends about their cancer experience

if they wish, but to refuse to discuss it if that is their choice, and not

to be expected to be more upbeat or less blue than anyone else;

• To be free of the stigma of cancer as a “dread disease” in all social

relations, wherever they may take place—from home to work or

market place;

• To be free of blame for having the disease and of guilt for having

survived it;
W AYS Y O U C A N M AKE A D IFFERENCE 69

• To participate in support groups and other survivor support and/or

advocacy activities as they wish, for in such settings they usually feel

less isolated, more informed, and more able to express their feelings,

be they feelings of hope or of despair, without fear of being regarded

as “bad” or “ungrateful” or simply “uncooperative” patients.

In the workplace, survivors have the right to equal job opportunities. This

means they have the right:

• To aspire to jobs worthy of their skills, and for which they are trained

and experienced, and thus to not have to accept jobs they would not

have considered before their cancer experience;

• To be hired, promoted, and accepted on return to work, according to

their individual abilities and qualifications, and not according to

“cancer” or “disability” stereotypes with “reasonable accommodation”

under Federal and state law such as changes in duties or hours,

which allows them to work while receiving medical treatment

without falling into a survivors “Catch 22”—too ill to work, but too

healthy to qualify as “disabled” and so entitled to protection under

the Americans with Disabilities Act;

• To privacy about their medical histories.

Since health insurance is an urgent survivorship concern, every effort

should be made to assure all survivors decent affordable coverage,

whether public or private or provided under managed care or fee-forservice systems. This means:

• For employers, that survivors have the right to be included in group

health coverage ... regardless of health history;

• For physicians, counselors, and other professionals concerned, that

they keep themselves and their survivor-clients informed and up-todate on the dangers of health insurance discrimination;

• For social policy makers, both in government and in the private

sector, that they seek both to broaden insurance programs to include

diagnostic procedures and treatments which help prevent recurrence

and ease survivor anxiety and pain, as well as to lower the unfair

barriers often imposed by the accidents of race, minority culture, age

or plain lack of means to pay for adequate health insurance coverage.
70

In sum, cancer survivors have the overriding right to access quality health

care. Implicit in that right is universal access to adequate health insurance

coverage. For “quality” becomes an empty word without the means to

achieve such coverage. A cancer may not even be discovered. And if it is,

care may be sub-optimal, no one will be accountable for it and the whole

society will be the losers.

Copyright © 1999 NCCS. Reprinted with permission from the National Coalition for

Cancer Survivorship 
W AYS Y O U C A N M AKE A D IFFERENCE 71

Getting Information from the

National Cancer Institute

Cancer Information Service

The Cancer Information Service (CIS), a program of the National Cancer

Institute (NCI), is a resource for information and education about cancer.

Through the CIS toll-free telephone number, callers can speak with

knowledgeable staff who can explain medical information in terms they

can easily understand. CIS staff can provide:

• Answers to questions about cancer.

• Written materials from the NCI.

• Referrals to clinical trials and cancer-related services.

• Assistance in quitting smoking (from information specialists trained

in smoking cessation counseling).

To speak with a CIS information specialist or to order publications

on the phone:

Call 1–800–4–CANCER (1–800–422–6237), 9:00 a.m. to 4:30 p.m., local

time, Monday through Friday. Deaf or hearing-impaired callers with TTY

equipment should call 1–800–332–8615.

For information 24 hours a day, 7 days a week:

Call 1–800–4–CANCER and select Option 4 to hear recorded information.

To obtain online assistance with cancer information:

Visit the CIS Web site at http://cis.nci.nih.gov and click on the LiveHelp

link between 9:00 a.m. and 5:00 p.m., Eastern time, Monday through

Friday.

To order publications online:

NCI provides access to a large number of publications. To order these

materials, go to the NCI home page, www.cancer.gov, and click on

“Publications Locator.” Follow the instructions on your screen. 
72

Organizations Where You Can “Make a Difference” The following organizations provide information, support and other resources to cancer survivowho have helped someone through cancer. Many of these groups may also have volunteer oppoyour community, or at the state or national level.NOTE: This list was current as of spring 2002. For an up-to-date list of groups, see the NCI Fact Sheet: “National That Offer Services to People With Cancer and Their Families” (http://cis.nci.nih.gov/fact/8_1.htm), or call 1–800–

General Organizations

Contact Information Description

American Cancer Society (ACS)1599 Clifton Road, NEAtlanta, GA 30329–4251Tel: 1–800–ACS–2345 (1–800–227–2345)http://www.cancer.orgAmerican Institute for Cancer Research (AICR)1759 R Street, NWWashington, DC 20009Tel: 1–800–843–8114http://www.aicr.orge-mail: aicrweb@aicr.org

The ACS is a volunteer health organization that offers a vprevention and early detection programs, as well as cancinformation and support to patients, their families, and caACS also supports research, provides printed materials, educational programs. A local ACS unit may be listed in tpages of the phone book under “American Cancer SocieThe AICR provides information about cancer prevention, through diet and nutrition. It offers a toll-free nutrition hotsupport network, funding of research grants, and a wide consumer and health professional brochures and health diet and nutrition and their link to cancer and cancer prevAICR also offers the AICR CancerResource, an informatresource program for cancer patients. A limited selection language publications is available.

Cancer Organizations
73

W AYS

Y O UC A NM AKE AD IFFERENCE

General Organizations (continued)

Contact Information Description

Cancer Care, Inc., National Office275 Seventh AvenueNew York, NY 10001Tel: 1–800–813–HOPE (1–800–813–4673)212–221–3300 (Administration) http://www.cancercare.org

e-mail: info@cancercare.orgCancer Hope NetworkTwo North Road, Suite AChester, NJ 07930Tel: 1–877–HOPENET (1–877–467–3638)http://www.cancerhopenetwork.org

e-mail: info@cancerhopenetwork.orgCancer Information and Counseling Line(CICL)(A service of the AMC Cancer Research Center)1600 Pierce StreetDenver, CO 80214Tel: 1–800–525–3777http://www.amc.org/html/info/h_info_cicl.htmle-mail: cicl@amc.org

Cancer Care is a national nonprofit agency that offers freinformation, financial assistance, and practical help to pecancer and their loved ones. Services are provided by onworkers and are available in person, over the telephone, the agency’s Web site. Cancer Care’s reach also extends professionals—providing education, information, and asssection of the Cancer Care Web site and some publicatioavailable in Spanish, and staff can respond to calls and eSpanish.The Cancer Hope Network provides individual support to patients and their families by matching them with trained who have undergone and recovered from a similar canceSuch matches are based on the type and stage of canceused, side effects experienced, and other factors.The CICL, part of the Psychosocial Program of the AMC Research Center, is a toll-free telephone service for canctheir family members and friends, cancer survivors, and tpublic. Professional counselors provide up-to-date medicemotional support through short-term counseling, and resreferrals to callers nationwide between the hours of 8:30 5:00 p.m., Mountain time. Individuals may also submit qucancer and request resources via e-mail.
74

General Organizations (continued)

Contact Information Description

Cancer Research Foundation of America1600 Duke Street, Suite 110Alexandria, VA 22314Tel: 1–800–227–CRFA (1–800–227–2732)http://www.preventcancer.org

Gilda’s Club® Worldwide322 Eighth Avenue, Suite 1402New York, NY 10001Tel: 212–305-1200http://www.gildasclub.org 

e-mail: info@gildasclub.orgPatient Advocate Foundation (PAF)753 Thimble Shoals Boulevard, Suite BNewport News, VA 23606Tel: 1–800–532–5274http://www.patientadvocate.org

e-mail: help@patientadvocate.orgR. A. Bloch Cancer Foundation, Inc.4435 Main Street, Suite 500Kansas City, MO 64111Tel: 816–WE–BUILD (816–932–8453)1–800–433–0464http://www.blochcancer.orge-mail: hotline@hrblock.com

The Cancer Research Foundation of America seeks to pby funding research and providing educational materials detection and nutrition.Gilda’s Clubs provide social and emotional support to catheir families, and friends. Lectures, workshops, networkspecial events, and a children’s program are available.PAF provides education, legal counseling, and referrals fpatients and survivors concerning managed care, insuranissues, job discrimination, and debt crisis matters.The R. A. Bloch Cancer Foundation matches newly diagnpatients with trained, home-based volunteers who have bfor the same type of cancer. It also distributes informationincluding a multidisciplinary list of institutions that offer seopinions. Information is available in Spanish.
75 W AYS Y O U C A N M AKE A D IFFERENCE

General Organizations (continued)

Contact Information Description

The mission of Vital Options

® is to use communications 

reach people dealing with cancer. This organization holds syndicated call-in cancer radio talk show called The Grou

which provides a forum for patients, long-term survivors, members, physicians, and therapists to discuss cancer isListeners can participate in the show during its broadcasSunday from 4:00 p.m. to 6:00 p.m., Eastern time, by cathe telephone numbers. A live Web simulcast of The Gro

can be heard by logging on to the Vital Options

® Web sit

The Wellness Community provides free psychological ansupport to cancer patients and their families. It offers supfacilitated by licensed therapists, stress reduction and caeducation workshops, nutrition guidance, exercise sessiosocial events.The nbmtLink motto is “A Second Chance at Life is Our PnbmtLink operates a 24-hour, toll-free number and providsupport to bone marrow transplant (BMT) patients and thserves as an information center for prospective BMT patias a resource for health professionals. Educational publicbrochures, and videos are available. Staff can respond to Spanish.

Vital Options

® and 

The Group Room

® Cancer Radio Talk Show

PO Box 19233Encino, CA 91416–9233Tel: 1–800–GRP–ROOM (1–800–477–7666)818–508–5657 (local)http://ww

w.vitaloptions.org

e-mail: geninfo@vitaloptions.orgThe Wellness Community35 East Seventh Street, Suite 412Cincinnati, OH 45202Tel: 1–888–793–WELL (1–888–793–9355)http://ww

w.wellness-communit

y.org

e-mail: help@wellness-communit

y.org

National Bone Marrow Transplant Link(nbmtLink)20411 West 12 Mile Road, Suite 108Southfield, MI 48076Tel: 1–800–546–5268http://comnet.org/nbmtlink

Bone Marrow Donors/Recipients
76

Bone Marrow Donors/Recipients (continued)

Contact Information Description

HOSPICELINK helps patients and their families find suppin their communities. It offers information about hospice acare and can refer cancer patients and their families to loand palliative care programs.The NHPCO is an association of programs that provide hpalliative care. It offers discussion groups, publications, iabout how to find a hospice, and information about the fiaspects of hospice. Some Spanish-language publications available, and staff are able to answer calls in Spanish.

National Marrow Donor Program® (NMDP)

3433 Broadway Street, NE, Suite 500Minneapolis, MN 55413Tel: 1–800–MARROW–2 (1–800–627–7692)1–888–999–6743 (Office of Patient Advocacy)http://www.marrow.org

HOSPICELINKThree Unity SquarePO Box 98Machiasport, ME 04655–0098Tel: 1–800–331–1620http://www.hospiceworld.org

National Hospice and Palliative CareOrganization (NHPCO)1700 Diagonal Road, Suite 300Alexandria, VA 22314Tel: 1–800–658–8898 (Helpline)http://www.nhpco.orge-mail: info@nhpco.org

Hospice

NMDP, which is funded by the Federal Government, was improve the effectiveness of the search for bone marrow keeps a registry of potential bone marrow donors and proinformation on bone marrow transplantation, peripheral btransplant, and unrelated donor stem cell transplant, incluof umbilical cord blood. NMDP’s Office of Patient Advocatransplant patients and their physicians through the donotransplant process by providing information, referrals, suadvocacy.
77 W AYS Y O U C A N M AKE A D IFFERENCE

Lymphedema 

Contact Information Description

NLN provides education and guidance to lymphedema pcare professionals, and the general public by disseminatinformation on the prevention and management of primasecondary lymphedema. It provides a toll-free support horeferral service to lymphedema treatment centers and heprofessionals; a quarterly newsletter with information aboand scientific developments; support groups; pen pals; ecourses for health care professionals and patients; and a database. Some Spanish-language materials are availabThe United Ostomy Association helps ostomy patients thaid and emotional support. It provides information to patipublic and sends volunteers to visit new ostomy patientsThe Lance Armstrong Foundation (LAF) seeks to enhancof life for those living with, through, and beyond cancer. F1997 by cancer survivor and champion cyclist Lance ArmLAF’s mission is to enhance the quality of survival of thowith cancer. LAF seeks to promote the optimal physical,psychological, and social recovery and care of cancer sutheir loved ones. The Foundation focuses its activities in areas: survivor services and support, groundbreaking suprograms, and medical and scientific research grants.

National Lymphedema Network (NLN)1611 Telegraph Avenue, Suite 1111Oakland, CA 94612–2138Tel: 1–800–541–3259http://ww

w.lymphnet.org

e-mail: nln@lymphnet.orgUnited Ostomy Association, Inc.19772 MacArthur Boulevard, Suite 200Irvine, CA 92612–2405Tel: 1–800–826–0826 (6:30 a.m.–4:30 p.m., Pacific time)http://ww

w.uoa.org

e-mail: uoa@deltanet.comLance Armstrong FoundationPO Box 161150 Austin, TX 78716–1150Tel: 512–236–8820http://ww

w.laf.org

Survivorship 

Ostomy 
78

NCCS is a network of groups and individuals that offer sucancer survivors and their loved ones. It provides informaresources on cancer support, advocacy, and quality-of-lifsection of the NCCS Web site and a limited selection of pare available in Spanish.

National Coalition for Cancer Survivorship(NCCS)1010 Wayne Avenue, Suite 770Silver Spring, MD 20910–5600Tel: 1–877–NCCS–YES (1–877–622–7937)http://www.canceradvocacy.org

e-mail: info@canceradvocacy.org

Survivorship (continued)

Contact Information Description
79 W AYS Y O U C A N M AKE A D IFFERENCE Brain Cancer

Contact Information Description

Organizations By Cancer Type

Bladder and Urologic Cancer

American Foundation for Urologic Disease(AFUD)1128 North Charles StreetBaltimore, MD 21201Tel: 1–800–242–2383http://ww

w.afud.org

e-mail: admin@afud.orgBladder Cancer WebCafehttp://blcwebcafe.org

The ABTA funds brain tumor research and provides inforhelp patients make educated decisions about their health ABTA offers printed materials about research on and treabrain tumors and provides listings of physicians, treatmeand support groups throughout the country. A limited seleSpanish-language publications is available.The Brain Tumor Society provides information about brairelated conditions for patients and their families. It offers patient/family telephone network, educational publicationresearch projects, and access to support groups for patie

AFUD supports research; provides education to patients, public, and health professionals; and offers patient suppofor those who have or may be at risk for a urologic diseadisorder. It provides information on urologic disease and including prostate cancer treatment options, bladder heasexual function. AFUD also offers prostate cancer suppothrough its Prostate Cancer Network. Some Spanish-langpublications are available.Bladder Cancer WebCafe is an online community for blapatients and those who care for them. It discusses treatmchemoprevention guidelines, survivor stories, a support gmore.

American Brain Tumor Association (ABTA)2720 River Road, Suite 146Des Plaines, IL 60018Tel: 1–800–886–ABTA (1–800–886–2282)http://ww

w.abta.org

e-mail: info@abta.orgThe Brain Tumor Society124 Watertown Street, Suite 3-HWatertown, MA 02472Tel: 1–800–770–TBTS (1–800–770–8287)http://ww

w.tbts.org

e-mail: info@tbts.org
80

Brain Cancer (continued)

Contact Information Description

Musella Foundation–Clinical Trials andNoteworthy Treatments for Brain Tumors1100 Peninsula BoulevardHewlett, NY11557Tel: 516–295–4740http://www.virtualtrials.org

e-mail: musella@virtualtrials.comNational Brain Tumor Foundation (NBTF)414 Thirteenth Street, Suite 700Oakland, CA 94612–2603Tel: 1–800–934–CURE (1–800–934–2873)http://www.braintumor.org

e-mail: nbtf@braintumor.org

This Web site offers breast cancer information to patients survivors of breast cancer. It includes advice as well as lsites that have breast cancer information.

Breast Cancer

Community Breast Health Project545 Bryant StreetPalo Alto, CA 94301Tel: 650–326–6686http://www-med.stanford.edu/CBHPe-mail: info@cbhp.org

This Web site, maintained by the Musella Foundation, offtreatment and clinical trial information for brain tumors.NBTF provides patients and their families with informatiocope with brain tumors. This organization conducts natioregional conferences, publishes printed materials for patifamily members, provides access to a national network osupport groups, and assists in answering patient inquirieawards grants to fund research. Staff are available to ansSpanish, and some Spanish-language publications are a
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Breast Cancer (continued)

Contact Information Description

ENCOREplus®

YWCA of the USA Office of Women’s HealthAdvocacy1015 18th Street, NW, Suite 700Washington, DC 20036Tel: 1–800–95E–PLUS (1–800–953–7587)http://www.ywca.org

e-mail: cgould@ywca.orgInflammatory Breast Cancer ResearchFoundationPO Box 90117Anchorage, AK 99509Tel: 1–877–786-7422http://www.ibcresearch.org

e-mail: librarian@ibcresearch.orgLiving Beyond Breast Cancer (LBBC)10 East Athens Avenue, Suite 204Ardmore, PA 19003Tel: 610–645–4567Fax: 610–645–4573http://www.lbbc.orge-mail: mail@lbbc.org

ENCOREplus® is the YWCA’s discussion and exercise pwomen who have had breast cancer surgery. It is designrestore physical strength and emotional well-being. A locthe YWCA, listed in the phone book, can provide more inabout ENCOREplus®.

This Web site is primarily dedicated to the advancement on inflammatory breast cancer.LBBC is a nonprofit educational organization committed empowering all women affected by breast cancer to live possible with the best quality of life. Programs include selarge-scale educational conferences, a quarterly educatinewsletter, outreach to medically underserved women, a focused educational booklet, a library and resource centSurvivors group, the Survivors' Helpline, and a Web siteresources help women and families affected by breast caactive role in their ongoing recovery from the disease regeducational background, social support, or financial reso
82

Breast Cancer (continued)

Contact Information Description

National Alliance of Breast CancerOrganizations (NABCO)9 East 37th Street, 10th FloorNew York, NY 10016Tel: 1–888–80–NABCO (1–888–806–2226)http://www.nabco.org

e-mail: NABCOinfo@aol.comNational Asian Women’s Health Organization(NAWHO)250 Montgomery Street, Suite 900San Francisco, CA 94104Tel: 415–989–9747http://www.nawho.orge-mail: nawho@nawho.orgNational Breast Cancer Coalition1707 L Street NW, Suite 1060Washington, DC 20036Tel: 1-800-622-2838http://www.natlbcc.org

Susan G. Komen Breast Cancer Foundation5005 LBJ Freeway, Suite 250Dallas, TX 75244Tel: 1–800–462–9273http://www.komen.org

e-mail: helpline@komen.org

NABCO is a nonprofit organization that provides informatbreast cancer and acts as an advocate for the legislative breast cancer patients and survivors. NABCO maintains organized by state, of phone numbers for support groupsNAWHO is working to improve the health status of Asian families through research, education, leadership, and puprograms. It has resources for Asian women in English, CLaotian, Vietnamese, and Korean. Publications on subjecreproductive rights, breast and cervical cancer, and tobacare available.This organization focuses on three main goals in the fighbreast cancer: increasing cancer research, increasing acwomen to quality treatment and clinical trials, and increasinfluence of women living with breast cancer.The Komen Foundation fights to eradicate breast cancer national grants, education, and screening and treatment communities throughout the United States.
83 W AYS Y O U C A N M AKE A D IFFERENCE American College of Obstetricians and Gynecologists 409 12th Street, SW PO Box 96920 Washington, DC 20090–6920

Tel: 202–638–5577http://ww

w.acog.org

Cancers of the Ovary, Uterus, Vulva, and Cervix (Gynecologic Cancers) 

The Witness Project

®

Arkansas Cancer Research CenterCancer Education4301 West Markham, Slot 629 ALittle Rock, AR 72205Tel: 1–800–275–1183Fax: 501–686–6479http://ww

w.acrc.uams.edu/Outreach/WitnessProject

The Witness Project

® is a culturally competent, commun

cancer education program through which cancer survivohealth advisors increase awareness, knowledge, screenidetection behaviors in rural and lower-income African-Ampopulations in an effort to reduce mortality and morbidity cancer.The Y-ME National Breast Cancer Organization provides and support to anyone who has been touched by breast Y-ME serves women with breast cancer and their familietheir national hotline (available 24 hours a day), open-doearly detection workshops, and support programs. Numechapter offices are located throughout the United States. the Y-ME Web site, a toll-free hotline, and publications aSpanish.

Breast Cancer (continued)

Contact Information Description

Y-ME National Breast Cancer Organization, Inc.212 West Van Buren StreetChicago, IL 60607–3908Tel: 1–800–221–2141 (English) 1–800–986–9505 (Spanish)http://y-me.orge-mail:help@y-me.org

This Web site lists detailed information for patients on caovary, uterus, vulva, and cervix.
84

Contact Information Description

This site offers a Web community created to provide infoshared experience, resources, support, and company for gynecologic cancers.NAWHO is working to improve the health status of Asian families through research, education, leadership, and puprograms. It has resources for Asian women in English, CLaotian, Vietnamese, and Korean. Publications on subjecreproductive rights, breast and cervical cancer, and tobacare available.NCCC focuses on giving support to women and their famon issues related to cervical cancer disease, screening, tand new research.NOCC raises awareness about ovarian cancer and promeducation about this disease. It has a toll-free telephone information, referral, support, and education about ovariaNOCC also offers support groups, a database of gynecooncologists searchable by state, and educational materiaselection of Spanish-language publications is available.

Cancers of the Ovary, Uterus, Vulva, and Cervix (continued)

EyesOnThePrize.Orghttp://www.eyesontheprize.org

e-mail: pr@eyesontheprize.orgNational Asian Women’s Health Organization(NAWHO)250 Montgomery Street, Suite 900San Francisco, CA 94104Tel: 415–989–9747http://www.nawho.orge-mail: nawho@nawho.orgNational Cervical Cancer Coalition (NCCC)16501 Sherman Way, Suite 110Van Nuys, CA 91406Tel: 1–800–685–553http://www.nccc-online.org

e-mail: acameren@nccc-online.orgNational Ovarian Cancer Coalition (NOCC)500 Northeast Spanish River Boulevard, Suite 14Boca Raton, FL 33431Tel: 1–888–OVARIAN (1–888–682–7426)http://www.ovarian.org

e-mail: NOCC@ovarian.org
85 W AYS Y O U C A N M AKE A D IFFERENCE Candlelighters Childhood Cancer Foundation (CCCF) 3910 Warner Street Kensington, MD 20895 Tel: 1–800–366–CCCF (1–800–366–2223) http://ww

w.candlelighters.org

e-mail: info@candlelighters.orgChildren’s Hospice International

®

2202 Mount Vernon Avenue, Suite 3C Alexandria, VA 22301Tel: 1–800–2–4–CHILD (1–800–242–4453)http://ww

w.chionline.org

e-mail: chiorg@aol.comFoundation for the Children’s Oncology Group(FCOG)440 East Huntington Drive, Suite 300PO Box 60012 Arcadia, CA 91066–6012Tel: 1–800–458–6223http://ww

w.nccf.org

e-mail: nccf-info@nccf.org

The CCCF is a nonprofit organization that provides informsupport, and advocacy through publications, an informaticlearinghouse, and a network of local support groups. A flist is available that lists organizations to which eligible faapply for assistance.Children’s Hospice International

® provides a network of s

dying children and their families. It serves as a clearinghresearch programs and support groups and offers educamaterials and training programs on pain management anseriously ill children.The FCOG supports research conducted by a network of each of which has a team of doctors, scientists, and othewith the special skills required for the diagnosis, treatmencare, and research on the cancers of infants, children, anadults. Advocating for children with cancer and the centethem is also a focus of the FCOG. A limited selection of Slanguage publications is available.

Contact Information Description

Cancers of the Ovary, Uterus, Vulva, and Cervix (continued)

Ovarian Cancer National Alliance (OCNA)910 17th Street, NW, Suite 413Washington, DC 20006Tel: 202–331–1332http://ww

w.ovariancancer.org

e-mail: ovarian@aol.com

OCNA works to increase public and professional understovarian cancer and to advocate for research to find more ways to diagnose, treat, and cure this disease. The Allianinformational materials; sponsors an annual advocacy cosurvivors and families; advocates on the issues of canceovarian cancer community; and works with women’s grouand health professionals to increase awareness of ovaria

Children’s Cancers
86

Contact Information

Children’s Cancers (continued)

Description

National Children’s Cancer Society1015 Locust, Suite 600St. Louis, MO 63101Tel: 1–800–532–6459http://www.children-cancer.com

e-mail: pfs@children-cancer.comOutlook: Life Beyond Childhood CancerUniversity of Wisconsin Medical SchoolUW Children’s Hospital Department of PediatricsK4/438 Clinical Science Center 600 Highland Avenue Madison, WI 53792–4672Tel: 608–263–6200http://www.outlook-life.orge-mail: jaamond@factstaff.wisc.edu

Pediatric Brain Tumor Foundation of the United States302 Ridgefield CourtAsheville, NC 28806Tel: 1–800–253–6530http://www.pbtfus.org

e-mail: pbtfus@pbtfus.org

The Society provides direct financial assistance and emosupport to children with cancer and their families.Outlook is an interactive information and support system of childhood cancer and their families.The Foundation seeks to find the cause and cure of brain children by supporting medical research, increasing publof the disease, and aiding in early detection and treatmechildhood brain tumors.
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This is a patient-centered, colorectal cancer-specific orgaoffers support, education, research, and patient advocacy The Colorectal Cancer Network is a national advocacy graises public awareness about colorectal cancer and prosupport services to colorectal cancer patients and their fafriends, and caregivers. Services include support groupschat room; e-mail listservs for survivors, caregivers, and hospital visitation programs; and a “One on One” service connects newly diagnosed individuals with long-term survNetwork also provides literature on screening, diagnosis, and supportive care for colorectal cancer.

Colon Cancer Alliance175 9th AvenueNew York, NY 10011Tel: 1–877–422–2030http://www.ccalliance.org

Colorectal Cancer NetworkPO Box 182Kensington, MD 20895–0182Tel: 301–879–1500http://www.colorectal-cancer.nete-mail: ccnetwork@colorectal-cancer.net

STARBRIGHT Foundation1990 South Bundy Drive, Suite 100Los Angeles, CA 90025Tel: 1–800–315–2580http://www.starbright.orge-mail: ford@starbright.org

The STARBRIGHT Foundation creates projects designed seriously ill children and adolescents cope with the psychmedical challenges they face. The Foundation produces such as interactive educational CD-ROMs and videos abconditions and procedures, provides advice on talking wiprofessional, and deals with other issues related to childradolescents who have serious medical conditions. All maavailable to children, adolescents, and their families free Staff can respond to calls in Spanish.

Children’s Cancers (continued)

Contact Information Description

Colon/Rectal Cancer
88

Large Granular Lymphocyte (LGL) LeukemiaRegistryH. Lee Moffitt Cancer Center and ResearchInstitute12902 Magnolia Drive, Suite 3157Tampa, FL 33162Tel: 1–800–663–3488http://www.moffitt.usf.edu/lgl-leukemia/lgl.htme-mail: LGLreg@moffitt.usf.eduThe Leukemia and Lymphoma Society (LLS)1311 Mamaroneck AvenueWhite Plains, NY10605–5221Tel: 1–800–955–4572http://www.leukemia-lymphoma.org

e-mail: infocenter@leukemia-lymphoma.org

Leukemia/Lymphoma

Kidney Cancer Association1234 Sherman Avenue, Suite 203Evanston, IL 60202–1375Tel: 847–332–1051; 1–800–850–9132http://www.kidneycancerassociation.org

e-mail: office@kidneycancerassociation.org

This registry is part of the Hematologic Malignancies ProH. Lee Moffitt Cancer Center and Research Institute. It cstudies information on people with LGL leukemia. It has aestablished a bank of blood and tissue samples from peodisease.The goal of the LLS is to find cures for leukemia, lymphoHodgkin’s disease, and multiple myeloma and to improve life for patients and their families. The Society supports mresearch and provides health education materials, as wefollowing services: patient financial aid for specified treatexpenses and transportation; family support groups; Firs(a professionally supervised peer support program); refereentry materials; and public and professional education. also provides audiotapes in English and some Spanish-lapublications.

Contact InformationKidney Cancer

DescriptionThe Kidney Cancer Association supports research, offers materials about the diagnosis and treatment of kidney casponsors support groups, and provides physician referrainformation.
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Contact Information

Leukemia/Lymphoma (continued)

Description

Lymphoma Information Networkhttp://www.lymphomainfo.net

Lymphoma Research Foundation (LRF)111 Broadway, 19th FloorNew York, NY 10006Tel: 1–800–235–6848http://www.lymphoma.orge-mail: LRF@lymphoma.org

This site is devoted to providing detailed information for tHodgkin’s disease and non-Hodgkin’s lymphoma. The sitcomplemented by links to other lymphoma sites for patiephysicians.LRF administers a research grant program, conducts puband advocacy activities, oversees finance and developmpromotes professional education.In addition, LRF funds research and provides educationaon lymphoma. It offers a helpline for general information lymphoma, as well as referrals to other resources, oncoloclinical trials, and support groups. A buddy program is avmatch newly diagnosed patients with others who have codisease. Some Spanish-language publications are also a
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Contact Information

Lung Cancer

Description

International Myeloma Foundation (IMF)12650 Riverside Drive, Suite 206North Hollywood, CA 91607Tel: 1–800–452–CURE (1–800–452–2873)http://www.myeloma.org

e-mail: TheIMF@myeloma.org

The Mesothelioma Web (MW) is dedicated to consolidatimesothelioma information, contacts, and important links Its resource coordinators are constantly on the lookout foinformation, and they are available to help find answers afor individual situations.

Multiple Myeloma

ALCASE offers programs designed to help improve the qfor people with lung cancer and their families. Programs education about the disease, psychosocial support, and issues that concern lung cancer survivors.This Web site is designed to increase awareness of lung its increasing impact on women. It includes lung cancer fnews, and press releases.

The Mesothelioma Web10655 Six Pines Drive, Suite 620The Woodlands, TX 77380Tel: 1–877–7367–6376http://www.mesotheliomaweb.orge-mail: info@mesotheliomaweb.org

Mesothelioma

Alliance for Lung Cancer Advocacy, Support,and Education (ALCASE)PO Box 849Vancouver, WA 98666Tel: 1–800–298–2436http://www.alcase.org

e-mail: info@alcase.orgIt’s Time to Focus on Lung CancerTel: 1–877–646–5864http://www.lungcancer.org

The IMF supports education, treatment, and research for myeloma. It provides a toll-free hotline, seminars, and edmaterials for patients and their families. Although the IMF sponsor support groups, it does keep a list of other organsupport groups and provides information on how to start group. A section of the IMF Web site and some printed mavailable in Spanish.
91 W AYS Y O U C A N M AKE A D IFFERENCE

MMRF supports research grants and professional and pasymposia on multiple myeloma and related blood cancerpublishes a quarterly newsletter and provides referrals anpackets free of charge to patients and family members.SPOHNC is a not-for-profit national organization founded address the emotional, physical, and humanistic needs ohave oral cancer and head and neck cancer.

Contact Information Description

The Multiple Myeloma Research Foundation(MMRF)11 Forest StreetNew Canaan, CT 06840Tel: 203–972–1250http://ww

w.multiplemyeloma.org

e-mail: themmrf@themmrf.orgSupport for People With Oral and Head andNeck Cancer, Inc. (SPOHNC)PO Box 53Locust Valley, NY11560–0053Tel: 1–800–377–0928http://ww

w.spohnc.org

e-mail: info@spohnc.org

Multiple Myeloma (continued)

Oral and Head and Neck Cancer

Pancreatic Cancer

PanCAN, a nonprofit advocacy organization, educates heprofessionals and the general public about pancreatic caincrease awareness of the disease. PanCAN also advocincreased funding of pancreatic cancer research and proto and awareness of the latest medical advances, suppoclinical trials, and reimbursement for care.

Pancreatic Cancer Action Network (PanCAN)PO Box 1010Torrance, CA 90505Tel: 1–877–2–PANCAN (1–877–272–6226)http://ww

w.pancan.org

e-mail: information@pancan.org
92

Contact Information Description

American Foundation for Urologic Disease(AFUD)1128 North Charles StreetBaltimore, MD 21201Tel: 1–800–242–2383http://www.afud.orge-mail: admin@afud.orgCaP CURE (Association for the Cure of Cancerof the Prostate)1250 Fourth Street, Suite 360Santa Monica, CA 90401Tel: 1–800–757–CURE (1–800–757–2873)http://www.capcure.org

e-mail: capcure@capcure.orgUs Too! International, Inc.5003 Fairview AvenueDowners Grove, IL 60515Tel: 630–795–1002 (in the Chicago area)1–800–80–US TOO (1–800–808–7866)http://www.ustoo.orge-mail: ustoo@ustoo.com

Prostate Cancer

AFUD supports research; provides education to patients, public, and health professionals; and offers patient suppofor those who have or may be at risk for a urologic diseadisorder. It provides information on urologic disease and including prostate cancer treatment options, bladder heasexual function. AFUD also offers prostate cancer suppothrough its Prostate Cancer Network. Some Spanish-langpublications are available.CaP CURE is a nonprofit organization that provides fundresearch projects to improve methods of diagnosing and prostate cancer. It also offers printed resources for prostasurvivors and their families. The mission of CaP CURE is cure for prostate cancer.Us Too! is a prostate cancer support group organization. Too! are to increase awareness of prostate cancer in the educate men newly diagnosed with prostate cancer, offegroups, and provide the latest information about treatmendisease. A limited selection of Spanish-language publicatavailable.
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Contact Information Description

Skin Cancer and Melanoma

Melanoma Education Foundation7 Jones RoadPeabody, MA 09160http://skincheck.come-mail: MEF@skincheck.orgThe Melanoma Patients’ Information PagePO Box 38Cloverdale, CA 95425http://www.mpip.org

e-mail: admin@mpip.orgThe Melanoma Research Foundation23704-5 El Toro Road, 206Lake Forest, CA 92630Tel: 1–800–673–1290http://www.melanoma.org/e-mail: mrf@melanoma.orgThe Skin Cancer FoundationPO Box 561New York, NY 10156Tel: 1–800–SKIN–490 (1–800–754–6490)http://www.skincancer.org

e-mail: info@skincancer.org

This Web site provides information about melanoma, emthe importance of monthly self-examination of the skin to melanoma while it is thin and curable.Designed for melanoma patients and melanoma investigWeb site includes published results of clinical trials in chevaccines, and gene therapy. It also has a database of resabstracts and a bulletin board for questions and answersThe Foundation supports medical research for the treatmmelanoma and acts as a resource for melanoma patientsfamilies, and friends.Major goals of The Skin Cancer Foundation are to increaawareness of the importance of taking protective measurthe damaging rays of the sun and to teach people how to the early signs of skin cancer. The Foundation conducts medical education programs to help reduce the incidence cancer.
94

Employment and Legal Rights for Cancer SurvivorsCould I now be passed over for a promotion? Can my office make special accommodations to mfor me to do my job now? These are some of the questions cancer survivors may have when thework after treatment. The Rehabilitation Act of 1973 and the Americans With Disabilities Act (Aprotect people against employment discrimination based on a disability. These laws often cover survivors.The resource list below offers some general information and specific resources to consult for anNOTE: Legal rights change frequently. Check all the material you read to be sure you are getting accurate and upinformation from a reliable source.

Disability and Discrimination

Contact Information Description

Equal Employment Opportunity Commission(EEOC)1801 L Street, NWWashington, DC 20507Tel/TTY: 1–800–669–6820http://www.eeoc.govFederal Laws Prohibiting Job Discrimination: Questions & Answershttp://www.eeoc.gov/facts/qanda.html

The ADA: Your Responsibilities as an Employer http://www.eeoc.gov/facts/ada17.html

The EEOC is the Federal agency that coordinates the invemployment discrimination. People can bring complaints employers if they believe they have experienced discrimiThis fact sheet can answer your questions about who is the ADA, workplace accommodation, and other importanThis fact sheet describes the responsibilities of an emplohis or her employees with disabilities.
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Disability and Discrimination (continued)

Contact Information Description

U.S. Department of Justice (DOJ)950 Pennsylvania Avenue, NWWashington, DC 20530–0001Tel: 1–800–514–0301http://www.usdoj.gov

U.S. Department of Labor (DOL)Office of Disability Employment Policy (ODEP)1331 F Street NW, Suite 300Washington, DC 20004Tel: 202–376–6200TTY: 202–376–6205http://www.dol.gov/dol/odep

Job Accommodation NetworkWest Virginia UniversityPO Box 6080Morgantown, WV 26506–6080Tel/TTY:1–800–526–7234http://www.jan.wvu.edu

The DOJ provides information to assist persons with disalegal issues, questions about the ADA, mediation serviceemployment issues.This agency provides fact sheets on a wide variety of disissues, including discrimination, workplace accommodatirights.This service of the U.S. Department of Labor offers ideas change a workplace to make it easier for an employee wdisability to do his or her job.
96

American Cancer Society (ACS)1599 Clifton Road, NEAtlanta, GA 30329–4251Tel: 1–800–ACS–2345 (1–800–227–2345)http://www.cancer.org

You can contact ACS for legal information.

Legal Assistance

Contact Information Description

National Employment Lawyers Association(NELA)44 Montgomery Street, Suite 2080San Francisco, CA 94104Tel: 415–296–7629http://www.nela.org

Local Bar AssociationCheck your local phone book.Legal Aid or Legal Services GroupCheck your local phone book.

NELA can help find a lawyer experienced in job discriminMany local bar associations provide information about holawyer and learn about legal assistance in your local areMany cities have legal aid groups that help provide free olegal services.

Other Legal Information
97

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Other Legal Information (continued)

Contact Information Description

Cancer Care, Inc., National Office275 Seventh AvenueNew York, NY 10001Tel: 1–800–813–HOPE (1–800–813–4673)http://www.cancercare.org

e-mail: info@cancercare.orgNational Coalition for Cancer Survivorship(NCCS)1010 Wayne Avenue, Suite 770Silver Spring, MD 20910–5600Tel: 1–877–NCCS–YES (1–877–622–7937)http://www.canceradvocacy.org

e-mail: info@canceradvocacy.org

Cancer Care has information on a wide range of cancer including employment issues.The NCCS provides cancer information, including a book Working It Out: Your Employment Rights as a Cancer Su
1. This book was: 

❑ easy to understand ❑ hard to understand

2. This information was:

❑ too much ❑ too little ❑ just about right

3. I suggest adding/deleting information about:

————————————————————————————————

————————————————————————————————

————————————————————————————————

4. I would:

____ recommend this book to another person

____ not recommend this book to another person

5. I received this book from:

____ a doctor, a nurse, or other health professional

____ an information rack at a cancer center, hospital, or doctor’s office

____ National Cancer Institute

____ another cancer group/organization (which one:__________________)

____ other (please explain: ________________________________________)

6. I am: ❑ a cancer survivor 

❑ a family member or friend of someone treated for cancer 

❑ a health professional ❑ other___________________

7. What is your age? ______

8. Did this book help you:

a) learn about the different ways you can 

“make a difference” in cancer? ❑ yes ❑ no

b) understand how you can benefit by taking part 

in cancer-related activities? ❑ yes ❑ no

c) learn about how you can get started in 

cancer-related activities? ❑ yes ❑ no

d) learn how you can contact organizations through 

which you can “make a difference”? ❑ yes ❑ no

9. In the next six months, how likely are you to 

take part in cancer-related activities?

❑ very likely ❒ somewhat likely ❒ not very likely ❑ already do

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Disclaimer:

The quotes in this book are from actual cancer survivors contacted by the

National Cancer Institute. To protect confidentiality, their names were changed.

The photographs in this book were supplied by the NCI or purchased from

commercial sources and may not necessarily be of actual cancer survivors. The

photographs were included to put a “human face” on the cancer experience.

This book was written and published by the National Cancer Institute (NCI),

9000 Rockville Pike, Bethesda, Maryland, 20892. The NCI is the U.S.

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Photo Credits:

Alamy: 58 - top, “Making a Difference In Government Programs and Policies” divider page, top; “Making a Differerence:

Resources to Learn More” divider page, bottom left. 

Comstock: 4 - Lower left; 29 - middle left; 37 - top left; 38 - middle left; 39 - lower left; 41 - botom left; 42 - lower left; 

49 - top left; 60, “Making a Differrerence: Resources to Learn More” divider page, second from top.

Corbis: “Making a Difference in Everyday Ways” divider page, middle right; 25, “Making a Difference With CancerRelated Organizations” divider page, middle; 40 - top; 58.

Eyewire: “Making a Difference: What it Means” divider page, bottom left; 16 - bottom; 37 - bottom right; 56; Making a

Difference: Resources to Learn More” divider page, top; 

Fotosearch: Facing Forward Series: Ways You Can Make a Difference in Cancer, cover, middle right; upper right,

bottom; 2 - top and bottom; 7, 8 - bottom left and bottom right; 12 - upper right and lower left; 13, 14, 16 - top; “Making a

Difference In Everyday Ways” divider page, bottom middle and left; “Making a Difference: What it Means” divider page,

top right and bottom; 28 - middle and bottom; 29, 30 top and bottom; 48, 56, 57, 58 - middle left; “Making a Difference:

Resources to Learn More” Divider Page, bottom; 66.

Getty: 16 - middle.

Image 100: “Making a Difference: What it Means” divider page, second from top.

Masterfile: 24, upper left

NCCS Rays: 17, 42 - top left:

NCI: Facing Forward Series: Ways You Can Make a Difference in Cancer cover, top middle, 1, 3, 10 - bottom; 15, 18, 21,

“Making a Difference: What it Means” divider page, third from top; 26 - top left and bottom right; 28 - top and bottom: 38 -

top left; 41 - top right; 45, 46 - middle; 47, 49 - bottom right; 50, “Making a Difference In Government Programs and

Policies” divider page, center right, third from top, and bottom; 55, “Making a Difference: Resources to Learn More” divider

page, top right; 65. 

PhotoDisc: Facing Fprward Series: Ways You Can Make a Difference in Cancer, cover, 2 - middle; 8 - top left and middle

left; 9, 10 -upper left; 11, 12 - upper right; “Making a Difference In Everyday Ways” divider page, top right; 23, 27, 

30 - upper right, “Making a Difference With Cancer-Related Organizations” divider page, top right; 33, 46 - bottom;

“Making a Difference In Government Programs and Policies, divider page, top; “Making a Difference: Resources to Learn

More” divider page, third from top.

Stockbyte: 2 - bottom, 7 
NIH Publication No. 02-5088

Printed June 2002

P012