Making a Difference: What It Means

Getting Involved: Things to Think About

Finding Ways You Can Make a Difference: A Guide

Thinking about Yourself Helping Others Learning and Teaching Working on Cancer-Related Events Working in Advocacy Working in Research Working in Government Programs

Making a Difference in Everyday Ways

About Making a Difference in Everyday Ways Helping with Everyday Activities Sharing Your Experiences Sharing What You Learn About Cancer Working with Others in Your Own "Backyard" Talking with Doctors, Nurses, and Other Health Care Providers

Making a Difference with Cancer-Related Organizations

About Making a Difference with Cancer-Related Organizations Working with Service and Support Organizations Working with Awareness and Education Organizations Working with Fundraising Organizations Working with Advocacy Organizations

Making a Difference in Cancer Research

About Making a Difference in Cancer Research Taking Part in Cancer Research Influencing Cancer Research Joining an Institutional Review Board Federal Government Programs That Welcome Consumer Involvement

Making a Difference in Government Programs and Policies

About Making a Difference in Government Programs and Policies Working with Local and State Government Cancer Programs Working with National Government Cancer Programs

Resources to Learn More

Using the Internet for Medical Advice The Cancer Survivors' Bill of Rights Getting Information from the National Cancer Institute Organizations Where You Can "Make a Difference" Cancer Organizations Organizations by Cancer Type Employment and Legal Rights for Cancer Survivors

Introduction

"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

About This Document

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 document as a way to help cancer survivors get involved in activities like these. This document 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 document has many ideas about ways you can get started in making a difference.

This document 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 document includes information to help you:

• Learn what it is like to make a difference in the fight against cancer. The document 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.
• Choose activities that interest you. Finding Ways You Can Make a Difference: A Guide 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 document has information about cancer organizations across the country. It includes phone numbers, addresses, and Web sites for many of these groups.

Read this document 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 document 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 document for another time. You may not be ready, interested, or able to get involved right now. That's okay. Save this document for another time or give it to someone else who wants to know more about cancer-related activities.

Terms used in this document

Cancer survivor is used throughout this document. 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. We use two symbols to help you find your way through the information in the document:

	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 cancer-related activity.

Back to Top Making a Difference: What It Means

"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."
• 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.

Getting Involved: 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.

Think About How Long You've Been Dealing with Cancer

• 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.

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.

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.

—  Margaret, cervical cancer survivor, 42

Even if you're not sure about your skills or talents, Finding Ways You Can Make a Difference: A Guide 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.

Back to Top Finding Ways You Can Make a Difference: A Guide

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 consider if the statements describe you.

Review the statements below. If two or more statements in one section apply to you, you may want to take a look at the pages the section directs you to. Reading these pages can give you some ideas about ways you can make a difference.

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 two or more statements in this section apply to you, you might want to help yourself (or someone close to you) before you help others, even if statements in other sections are also applicable. You might also want to take some time to learn more about your type of cancer. (See Organizations by Cancer Type 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 two or more statements in this section apply to you, 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 Making a Difference with Cancer Organizations.)

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 two or more statements in this section apply to you, 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 Making a Difference with Cancer 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 cancer-related causes.
• I am interested in giving money, computers, or other items to a cancer-related cause.

If two or more statements in this section apply to you, 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 Making a Difference with Cancer 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 two or more statements in this section apply to you, 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 Making a Difference with Cancer 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 two or more statements in this section apply to you, you may be interested in participating in research or encouraging others to do so. (For more information, go to Making a Difference in 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 two or more statements in this section apply to you, you might want to get involved in government programs. (For more information, go to Making a Difference in Government Programs.)

Back to Top Making a Difference in Everyday Ways

"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

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 document. (See Organizations Where You Can "Make a Difference" 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.

Sharing Your Experiences

—  Lahoma, bone cancer survivor, 55

If you are reading this document, 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 doctor's 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.

Sharing What You Learn About Cancer

—  Harold, husband of a 63-year-old breast cancer survivor

When you learn about cancer, you not only help yourself, but you can also can 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 Organizations Where You Can "Make a Difference" 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.

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 Organizations Where You Can "Make a Difference" for Internet sites. (To learn more about the Internet, see 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.

Working with Others in Your Own "Backyard"

• 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 document.
• 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 Employment and Legal Rights for Cancer Survivors).

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.

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 Organizations Where You Can "Make a Difference" for a list of cancer organizations.)

Talking with Doctors, Nurses, and Other Health Care Providers

• 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 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.

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.
• 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 document. (See Organizations Where You Can "Make a Difference" 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, see Making a Difference with Cancer 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 Thinking About Your Choices: A Guide.

Back to Top Making a Difference with Cancer-Related Organizations

"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

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 document, starting on Organizations Where You Can "Make a Difference".

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

Working with Service and Support Organizations

—  Consuelo, ovarian cancer survivor, 51i

• 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.

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.

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.

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 of Fundraising 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 Organizations Where You Can "Make a Difference" 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. 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.

Working with Advocacy Organizations

—  Kelly, Hodgkin's disease survivor, 42

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.

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. 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.

Ways to Get Started-- Cancer-Related Organizations Learn about what types of activities interest you. Finding Ways You Can Make a Difference: A Guide can help you think about the kinds of activities you like to do and are good at. Find cancer-related organizations by going to Organizations Where You Can "Make a Difference". 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 Thinking About Your Choices: A Guide.

Back to Top Making a Difference in Cancer Research

"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

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.

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.

Influencing Cancer Research

—  Juana, lost her son to cancer, 53

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.

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 Federal Government Programs That Welcome Consumer Involvement; many organizations listed in Organizations Where You Can "Make a Difference" 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.

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 in Federal Government Programs That Welcome Consumer Involvement and Organizations Where You Can "Make a Difference". Talk to your doctor about clinical trials in your area. Some of these studies may also be listed in your local newspaper.

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 in Organizations Where You Can "Make a Difference".)
• 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.

Federal Government Programs That Welcome Consumer Involvement

After you have worked in cancer research for a while, think about how you liked this experience. One way is to fill out Thinking About Your Choices: A Guide.

Back to Top Making a Difference in Government Programs and Policies

"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

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.

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.

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." 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.

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 Thinking About Your Choices: A Guide.

Back to Top Resources to Learn More

Thinking About Your Choices: A Guide

After you've done some work in cancer-related activities, think about the choices you made. Then, answer the questions below. You may want to print this out for a reference.

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? (circle one)

• Yes
• No

If NO, think about waiting a little while and trying again. If YES, answer the next questions:

3. What did I like best?

4. What did I like least?

5. Do I like doing this work? (circle one)

• 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.

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.

If YES...
If you like what you are doing, you can:

• Keep doing it.
• Decide whether you want to do more. Read this document again and find other activities that interest you.

Remember to slow down. You need to take care of yourself before you can make a difference in the lives of others.

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.
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.

The Cancer Survivors' Bill of Rights

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.

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;
• 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-for-service 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-to-date 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.

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.

Getting Information from the National Cancer Institute

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).

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.

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

NCI provides access to a large number of publications. To order these materials, go to the NCI home page, Cancer.gov, and click on "Publications Locator." Follow the instructions on your screen.

Organizations Where You Can "Make a Difference"

The following organizations provide information, support and other resources to cancer survivors and those who have helped someone through cancer. Many of these groups may also have volunteer opportunities in your 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 Organizations That Offer Services to People with Cancer and Their Families, or call 1-800-4-CANCER.

Cancer Organizations

Organizations by Cancer Type

Employment and Legal Rights for Cancer Survivors

Could I now be passed over for a promotion? Can my office make special accommodations to make it easier for me to do my job now? These are some of the questions cancer survivors may have when they return to work after treatment. The Rehabilitation Act of 1973 and the Americans With Disabilities Act (ADA) of 1990 protect people against employment discrimination based on a disability. These laws often cover cancer survivors.

The resource list below offers some general information and specific resources to consult for answers.

NOTE: Legal rights change frequently. Check all the material you read to be sure you are getting accurate and up-to-date information from a reliable source.

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