Introduction
Making a Difference: What It Means
Finding Ways You Can Make a Difference: A Guide
Making a Difference in Everyday Ways
Making a Difference with Cancer-Related Organizations
Making a Difference in Cancer Research
Making a Difference in Government Programs and Policies
Resources to Learn More
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
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.
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.
"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
If you are reading this document, 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.
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.
|
"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. |
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.
|
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.
-
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.)
-
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.)
-
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.
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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.)
-
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.)
-
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.)
-
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.)
-
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
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.
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.
|
"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 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.
"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
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.
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 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.)
|
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 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.
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.
|
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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
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
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
|
"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, 51i
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.
|
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.
|
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.
|
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.
|
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?
|
"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
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
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.
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.
"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
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).
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.
-
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.
Government Program
|
Description
|
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 Trial Cooperative Group Program
See the Cooperative Group Program link on the Web site by going to , 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.
|
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.
|
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
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
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.
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.
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
|
Consumer Advocates in Research and Related Activities (CARRA)
|
The National Cancer Institute seeks consumer input and feedback on many of its
policies and programs.
The CARRA program is described in more detail in
Federal Government Programs That Welcome Consumer Involvement.
|
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 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."
|
|
Several FDA programs have patients and consumers on their scientific and
technical advisory committees. Training is provided to people who are selected.
|
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
www.fda.gov/oashi/home.html
e-mail: oshi@oc.fda.gov
|
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.
|
Cancer Patient Representative Program
(Address same as above)
|
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.
|
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
|
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.
|
|
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.
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
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)
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)
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.
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.
-
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.
-
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.
-
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.
-
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.
-
How is the information selected?
Is there an editorial board? Do people with good medical qualifications review
the material before it is posted?
-
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.
-
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.
-
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.
(Excerpts from the National Coalition for 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.
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.
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, Cancer.gov, and click
on "Publications Locator." Follow the instructions on your screen.
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.
General Organizations
|
Contact Information |
Description |
American Cancer Society (ACS)
1599 Clifton Road, NE
Atlanta, GA 30329-4251
Tel: 1-800-ACS-2345 (1-800-227-2345)
http://www.cancer.org
|
The ACS is a volunteer health organization that offers a variety of
prevention and early detection programs, as well as cancer information and
support to patients, their families, and caregivers. The ACS also supports
research, provides printed materials, and conducts educational programs. A
local ACS unit may be listed in the white pages of the phone book under
"American Cancer Society."
|
American Institute for Cancer Research (AICR)
1759 R Street, NW
Washington, DC 20009
Tel: 1-800-843-8114
http://www.aicr.org
e-mail: aicrweb@aicr.org |
The AICR provides information about cancer prevention, particularly
through diet and nutrition. It offers a toll-free nutrition hotline, pen pal
support network, funding of research grants, and a wide array of consumer and
health professional brochures and health aids about diet and nutrition and
their link to cancer and cancer prevention. The AICR also offers the AICR
CancerResource, an information and resource program for cancer patients. A
limited selection of Spanish language publications is available.
|
Cancer Care, Inc., National Office
275 Seventh Avenue
New York, NY 10001
Tel: 1-800-813-HOPE (1-800-813-4673)
212-221-3300 (Administration)
http://www.cancercare.org
e-mail: info@cancercare.org |
Cancer Care is a national nonprofit agency that offers free
support, information, financial assistance, and practical help to people with
cancer and their loved ones. Services are provided by oncology social workers
and are available in person, over the telephone, and through the agency's Web
site. Cancer Care's reach also extends to professionals--providing education,
information, and assistance. A section of the Cancer Care Web site and some
publications are available in Spanish, and staff can respond to calls and
e-mails in Spanish.
|
Cancer Hope Network
Two North Road, Suite A
Chester, NJ 07930
Tel: 1-877-HOPENET (1-877-467-3638)
http://www.cancerhopenetwork.org
e-mail: info@cancerhopenetwork.org |
The Cancer Hope Network provides individual support to cancer
patients and their families by matching them with trained volunteers who have
undergone and recovered from a similar cancer experience. Such matches are
based on the type and stage of cancer, treatments used, side effects
experienced, and other factors.
|
Cancer Information and Counseling Line (CICL)
(A service of the AMC Cancer Research Center)
1600 Pierce Street
Denver, CO 80214
Tel: 1-800-525-3777
http://www.amc.org/html/info/h_info_cicl.html
e-mail: cicl@amc.org
|
The CICL, part of the Psychosocial Program of the AMC Cancer
Research Center, is a toll-free telephone service for cancer patients, their
family members and friends, cancer survivors, and the general public.
Professional counselors provide up-to-date medical information, emotional
support through short-term counseling, and resource referrals to callers
nationwide between the hours of 8:30 a.m. and 5:00 p.m., Mountain time.
Individuals may also submit questions about cancer and request resources via
e-mail.
|
Cancer Research Foundation of America
1600 Duke Street, Suite 110
Alexandria, VA 22314
Tel: 1-800-227-CRFA (1-800-227-2732)
http://www.preventcancer.org
|
The Cancer Research Foundation of America seeks to prevent cancer
by funding research and providing educational materials on early detection and
nutrition.
|
Gilda's Club® Worldwide
322 Eighth Avenue, Suite 1402
New York, NY 10001
Tel: 212-305-1200
http://www.gildasclub.org
e-mail: info@gildasclub.org
|
Gilda's Clubs provide social and emotional support to cancer
patients, their families, and friends. Lectures, workshops, networking groups,
special events, and a children's program are available.
|
Patient Advocate Foundation (PAF)
753 Thimble Shoals Boulevard, Suite B
Newport News, VA 23606
Tel: 1-800-532-5274
http://www.patientadvocate.org
e-mail: help@patientadvocate.org
|
PAF provides education, legal counseling, and referrals for cancer patients and
survivors concerning managed care, insurance, financial issues, job
discrimination, and debt crisis matters.
|
R. A. Bloch Cancer Foundation, Inc.
4435 Main Street, Suite 500
Kansas City, MO 64111
Tel: 816-WE-BUILD (816-932-8453)
1-800-433-0464
http://www.blochcancer.org
e-mail: hotline@hrblock.com
|
The R. A. Bloch Cancer Foundation matches newly diagnosed cancer
patients with trained, home-based volunteers who have been treated for the same
type of cancer. It also distributes informational materials, including a
multidisciplinary list of institutions that offer second opinions. Information
is available in Spanish.
|
Vital Options® and The Group Room® Cancer Radio Talk
Show
PO Box 19233
Encino, CA 91416-9233
Tel: 1-800-GRP-ROOM (1-800-477-7666)
818-508-5657 (local)
http://www.vitaloptions.org
e-mail: geninfo@vitaloptions.org
|
The mission of Vital Options® is to use communications
technology to reach people dealing with cancer. This organization holds a
weekly syndicated call-in cancer radio talk show called The Group Room®,
which provides a forum for patients, long-term survivors, family members,
physicians, and therapists to discuss cancer issues. Listeners can participate
in the show during its broadcast every Sunday from 4:00 p.m. to 6:00 p.m.,
Eastern time, by calling either of the telephone numbers. A live Web simulcast
of The Group Room® can be heard by logging on to the Vital Options® Web
site. |
The Wellness Community
35 East Seventh Street, Suite 412
Cincinnati, OH 45202
Tel: 1-888-793-WELL (1-888-793-9355)
http://www.thewellnesscommunity.org
e-mail: help@wellness-community.org
|
The Wellness Community provides free psychological and emotional
support to cancer patients and their families. It offers support groups
facilitated by licensed therapists, stress reduction and cancer education
workshops, nutrition guidance, exercise sessions, and social events.
|
Bone Marrow Donors/Recipients
|
Contact Information |
Description |
National Bone Marrow Transplant Link (nbmtLink)
20411 West 12 Mile Road, Suite 108
Southfield, MI 48076
Tel: 1-800-546-5268
http://www.nbmtlink.org
|
The nbmtLink motto is "A Second Chance at Life is Our Priority."
The nbmtLink operates a 24-hour, toll-free number and provides peer support to
bone marrow transplant (BMT) patients and their families. It serves as an
information center for prospective BMT patients as well as a resource for
health professionals. Educational publications, brochures, and videos are
available. Staff can respond to calls in Spanish. |
National Marrow Donor Program® (NMDP)
3433 Broadway Street, NE, Suite 500
Minneapolis, MN 55413
Tel: 1-800-MARROW-2 (1-800-627-7692)
1-888-999-6743 (Office of Patient Advocacy)
http://www.marrow.org
|
NMDP, which is funded by the Federal Government, was created to
improve the effectiveness of the search for bone marrow donors. It keeps a
registry of potential bone marrow donors and provides free information on bone
marrow transplantation, peripheral blood stem cell transplant, and unrelated
donor stem cell transplant, including the use of umbilical cord blood. NMDP's
Office of Patient Advocacy assists transplant patients and their physicians
through the donor search-andtransplant process by providing information,
referrals, support, and advocacy.
|
Hospice
|
Contact Information |
Description |
HOSPICELINK
Three Unity Square
PO Box 98
Machiasport, ME 04655-0098
Tel: 1-800-331-1620
http://www.hospiceworld.org
|
HOSPICELINK helps patients and their families find support services in their
communities. It offers information about hospice and palliative care and can
refer cancer patients and their families to local hospice and palliative care
programs.
|
National Hospice and Palliative Care Organization (NHPCO)
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
Tel: 1-800-658-8898 (Helpline)
http://www.nhpco.org
e-mail: info@nhpco.org
|
The NHPCO is an association of programs that provide hospice and
palliative care. It offers discussion groups, publications, information about
how to find a hospice, and information about the financial aspects of hospice.
Some Spanish-language publications are available, and staff are able to answer
calls in Spanish.
|
Lymphedema
|
Contact Information |
Description |
National Lymphedema Network (NLN)
1611 Telegraph Avenue, Suite 1111
Oakland, CA 94612-2138
Tel: 1-800-541-3259
http://www.lymphnet.org
e-mail: nln@lymphnet.org |
NLN provides education and guidance to lymphedema patients, health
care professionals, and the general public by disseminating information on the
prevention and management of primary and secondary lymphedema. It provides a
toll-free support hotline; a referral service to lymphedema treatment centers
and health care professionals; a quarterly newsletter with information about
medical and scientific developments; support groups; pen pals; educational
courses for health care professionals and patients; and a computer database.
Some Spanish-language materials are available.
|
Ostomy
|
Contact Information |
Description |
United Ostomy Association, Inc.
19772 MacArthur Boulevard, Suite 200
Irvine, CA 92612-2405
Tel: 1-800-826-0826
(6:30 a.m.-4:30 p.m., Pacific time)
http://www.uoa.org
e-mail: uoa@deltanet.com
|
The United Ostomy Association helps ostomy patients through mutual
aid and emotional support. It provides information to patients and the public
and sends volunteers to visit new ostomy patients.
|
Survivorship
|
Contact Information |
Description |
Lance Armstrong Foundation
PO Box 161150
Austin, TX 78716-1150
Tel: 512-236-8820
http://www.laf.org
|
The Lance Armstrong Foundation (LAF) seeks to enhance the quality
of life for those living with, through, and beyond cancer. Founded in 1997 by
cancer survivor and champion cyclist Lance Armstrong, the LAF's mission is to
enhance the quality of survival of those diagnosed with cancer. LAF seeks to
promote the optimal physical, psychological, and social recovery and care of
cancer survivors and their loved ones. The Foundation focuses its activities in
the following areas: survivor services and support, groundbreaking survivorship
programs, and medical and scientific research grants.
|
National Coalition for Cancer Survivorship (NCCS)
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910-5600
Tel: 1-877-NCCS-YES (1-877-622-7937)
http://www.canceradvocacy.org
e-mail: info@canceradvocacy.org |
NCCS is a network of groups and individuals that offer support to
cancer survivors and their loved ones. It provides information and resources on
cancer support, advocacy, and quality-of-life issues. A section of the NCCS Web
site and a limited selection of publications are available in Spanish.
|
Bladder and Urologic Cancer
|
Contact Information |
Description |
American Foundation for Urologic Disease
(AFUD)
1128 North Charles Street
Baltimore, MD 21201
Tel: 1-800-242-2383
http://www.afud.org
e-mail: admin@afud.org
|
AFUD supports research; provides education to patients, the general
public, and health professionals; and offers patient support services for those
who have or may be at risk for a urologic disease or disorder. It provides
information on urologic disease and dysfunctions, including prostate cancer
treatment options, bladder health, and sexual function. AFUD also offers
prostate cancer support groups through its Prostate Cancer Network. Some
Spanish-language publications are available.
|
Bladder Cancer WebCafe
http://blcwebcafe.org
|
Bladder Cancer WebCafe is an online community for bladder cancer
patients and those who care for them. It discusses treatment options,
chemoprevention guidelines, survivor stories, a support group, and more.
|
Brain Cancer
|
Contact Information |
Description |
American Brain Tumor Association (ABTA)
2720 River Road, Suite 146
Des Plaines, IL 60018
Tel: 1-800-886-ABTA (1-800-886-2282)
http://www.abta.org
e-mail: info@abta.org
|
The ABTA funds brain tumor research and provides information to
help patients make educated decisions about their health care. The ABTA offers
printed materials about research on and treatment of brain tumors and provides
listings of physicians, treatment facilities, and support groups throughout the
country. A limited selection of Spanish-language publications is available.
|
The Brain Tumor Society
124 Watertown Street, Suite 3-H
Watertown, MA 02472
Tel: 1-800-770-TBTS (1-800-770-8287)
http://www.tbts.org
e-mail: info@tbts.org
|
The Brain Tumor Society provides information about brain tumors and related
conditions for patients and their families. It offers a patient/family
telephone network, educational publications, funding for research projects, and
access to support groups for patients.
|
Musella Foundation-Clinical Trials and Noteworthy Treatments for
Brain Tumors
1100 Peninsula Boulevard
Hewlett, NY 11557
Tel: 516-295-4740
http://www.virtualtrials.org
e-mail: musella@virtualtrials.com
|
This Web site, maintained by the Musella Foundation, offers extensive treatment
and clinical trial information for brain tumors.
|
National Brain Tumor Foundation (NBTF)
414 Thirteenth Street, Suite 700
Oakland, CA 94612-2603
Tel: 1-800-934-CURE (1-800-934-2873)
http://www.braintumor.org
e-mail: nbtf@braintumor.org
|
NBTF provides patients and their families with information on how
to cope with brain tumors. This organization conducts national and regional
conferences, publishes printed materials for patients and family members,
provides access to a national network of patient support groups, and assists in
answering patient inquiries. NBTF also awards grants to fund research. Staff
are available to answer calls in Spanish, and some Spanish-language
publications are available.
|
Breast Cancer
|
Contact Information |
Description |
Breast Cancer Network of Strength
212 West Van Buren Street
Chicago, IL 60607-3908
Tel: 1-800-221-2141 (English)
1-800-986-9505 (Spanish)
http://www.networkofstrength.org |
Breast Cancer Network of Strength, formerly known as Y-ME National Breast Cancer Organization®, ensures through information, empowerment, and peer support that no one faces breast cancer alone. The organization has affiliates throughout the United States. YourShoes, the organization's peer support services, includes the 24/7 breast cancer support center for telephone conversations; match programs; support via e-mail; a monthly teleconference; and survivor-facilitated support groups. Breast Cancer Network of Strength's newsletters, other publications, and Web site provide information and support to those touched by breast cancer. Network of Strength Advocacy works to increase breast cancer research funding, supports breast cancer-related clinical studies, and ensures quality health care for all. A section of the Web site and publications are available in Spanish, Chinese, Korean, Tagalog, Russian, and Vietnamese.
|
Community Breast Health Project
545 Bryant Street
Palo Alto, CA 94301
Tel: 650-326-6686
http://www-med.stanford.edu/CBHP
e-mail: info@cbhp.org
|
This Web site offers breast cancer information to patients and survivors of
breast cancer. It includes advice as well as links to other sites that have
breast cancer information.
|
ENCOREplus®
YWCA of the USA Office of Women's Health Advocacy
1015 18th Street, NW, Suite 700
Washington, DC 20036
Tel: 1-800-95E-PLUS (1-800-953-7587) http://www.ywca.org
e-mail: cgould@ywca.org
|
ENCOREplus® is the YWCA's discussion and exercise program for
women who have had breast cancer surgery. It is designed to help restore
physical strength and emotional well-being. A local branch of the YWCA, listed
in the phone book, can provide more information about ENCOREplus®.
|
Inflammatory Breast Cancer Research Foundation
PO Box 90117
Anchorage, AK 99509
Tel: 1-877-786-7422
http://www.ibcresearch.org
e-mail: librarian@ibcresearch.org |
This Web site is primarily dedicated to the advancement of research
on inflammatory breast cancer.
|
Living Beyond Breast Cancer (LBBC)
10 East Athens Avenue, Suite 204
Ardmore, PA 19003
Tel: 610-645-4567
Fax: 610-645-4573
http://www.lbbc.org
e-mail: mail@lbbc.org
|
LBBC is a nonprofit educational organization committed to
empowering all women affected by breast cancer to live as long as possible with
the best quality of life. Programs include semiannual large-scale educational
conferences, a quarterly educational newsletter, outreach to medically
underserved women, a consumerfocused educational booklet, a library and
resource center, the Young Survivors group, the Survivors' Helpline, and a Web
site. These resources help women and families affected by breast cancer take an
active role in their ongoing recovery from the disease regardless of
educational background, social support, or financial resources.
|
National Alliance of Breast Cancer Organizations (NABCO)
9 East 37th Street, 10th Floor
New York, NY 10016
Tel: 1-888-80-NABCO (1-888-806-2226)
http://www.nabco.org
e-mail: NABCOinfo@aol.com
|
NABCO is a nonprofit organization that provides information about
breast cancer and acts as an advocate for the legislative concerns of breast
cancer patients and survivors. NABCO maintains a list, organized by state, of
phone numbers for support groups.
|
National Asian Women's Health Organization (NAWHO)
250 Montgomery Street, Suite 900
San Francisco, CA 94104
Tel: 415-989-9747
http://www.nawho.org
e-mail: nawho@nawho.org
|
NAWHO is working to improve the health status of Asian women and
families through research, education, leadership, and public policy programs.
It has resources for Asian women in English, Cantonese, Laotian, Vietnamese,
and Korean. Publications on subjects such as reproductive rights, breast and
cervical cancer, and tobacco control are available.
|
National Breast Cancer Coalition
1707 L Street NW, Suite 1060
Washington, DC 20036
Tel: 1-800-622-2838
http://www.natlbcc.org |
This organization focuses on three main goals in the fight against
breast cancer: increasing cancer research, increasing access for all women to
quality treatment and clinical trials, and increasing the influence of women
living with breast cancer.
|
Susan G. Komen Breast Cancer Foundation
5005 LBJ Freeway, Suite 250
Dallas, TX 75244
Tel: 1-800-462-9273
http://www.komen.org
e-mail: helpline@komen.org
|
The Komen Foundation fights to eradicate breast cancer by funding
national grants, education, and screening and treatment projects in communities
throughout the United States.
|
The Witness Project®
Arkansas Cancer Research Center
Cancer Education
4301 West Markham, Slot 629 A
Little Rock, AR 72205
Tel: 1-800-275-1183
Fax: 501-686-6479
http://www.acrc.uams.edu/Outreach/WitnessProject |
The Witness Project® is a culturally competent, community-based
cancer education program through which cancer survivors and lay health advisors
increase awareness, knowledge, screening, and early detection behaviors in
rural and lower-income African-American populations in an effort to reduce
mortality and morbidity from breast cancer.
|
Cancers of the Ovary, Uterus,
Vulva, and Cervix (Gynecologic Cancers)
|
Contact Information |
Description |
American College of Obstetricians and Gynecologists
409 12th Street, SW
PO Box 96920
Washington, DC 20090-6920
Tel: 202-638-5577
http://www.acog.org
|
This Web site lists detailed information for patients on cancers of the ovary,
uterus, vulva, and cervix.
|
EyesOnThePrize.Org
http://www.eyesontheprize.org
e-mail: pr@eyesontheprize.org
|
This site offers a Web community created to provide information,
shared experience, resources, support, and company for women with gynecologic
cancers. |
National Asian Women's Health Organization (NAWHO)
250 Montgomery Street, Suite 900
San Francisco, CA 94104
Tel: 415-989-9747
http://www.nawho.org
e-mail: nawho@nawho.org
|
NAWHO is working to improve the health status of Asian women and
families through research, education, leadership, and public policy programs.
It has resources for Asian women in English, Cantonese, Laotian, Vietnamese,
and Korean. Publications on subjects such as reproductive rights, breast and
cervical cancer, and tobacco control are available.
|
National Cervical Cancer Coalition (NCCC)
16501 Sherman Way, Suite 110
Van Nuys, CA 91406
Tel: 1-800-685-5531
http://www.nccc-online.org
e-mail: acameren@nccc-online.org |
NCCC focuses on giving support to women and their family members on
issues related to cervical cancer disease, screening, treatment, and new
research.
|
National Ovarian Cancer Coalition (NOCC)
500 Northeast Spanish River Boulevard, Suite 14
Boca Raton, FL 33431
Tel: 1-888-OVARIAN (1-888-682-7426)
http://www.ovarian.org
e-mail: NOCC@ovarian.org
|
NOCC raises awareness about ovarian cancer and promotes education
about this disease. It has a toll-free telephone number for information,
referral, support, and education about ovarian cancer. NOCC also offers support
groups, a database of gynecologic oncologists searchable by state, and
educational materials. A limited selection of Spanish-language publications is
available.
|
Ovarian Cancer National Alliance (OCNA)
910 17th Street, NW, Suite 413
Washington, DC 20006
Tel: 202-331-1332
http://www.ovariancancer.org
e-mail: ovarian@aol.com |
OCNA works to increase public and professional understanding of
ovarian cancer and to advocate for research to find more effective ways to
diagnose, treat, and cure this disease. The Alliance distributes informational
materials; sponsors an annual advocacy conference for survivors and families;
advocates on the issues of cancer to the ovarian cancer community; and works
with women's groups, seniors, and health professionals to increase awareness of
ovarian cancer.
|
Children's Cancers
|
Contact Information |
Description |
Candlelighters Childhood Cancer Foundation (CCCF)
3910 Warner Street
Kensington, MD 20895
Tel: 1-800-366-CCCF (1-800-366-2223)
http://www.candlelighters.org
e-mail: info@candlelighters.org
|
The CCCF is a nonprofit organization that provides information,
peer support, and advocacy through publications, an information clearinghouse,
and a network of local support groups. A financial aid list is available that
lists organizations to which eligible families may apply for assistance.
|
Children's Hospice International®
2202 Mount Vernon Avenue, Suite 3C
Alexandria, VA 22301
Tel: 1-800-2-4-CHILD (1-800-242-4453)
http://www.chionline.org
e-mail: chiorg@aol.com
|
Children's Hospice International® provides a network of support
for dying children and their families. It serves as a clearinghouse for
research programs and support groups and offers educational materials and
training programs on pain management and the care of seriously ill children.
|
CureSearch
440 East Huntington Drive, Suite 400
PO Box 60012
Arcadia, CA 91066-6012
Tel: 1-800-458-6223
http://www.curesearch.org
e-mail: info@Curesearch.org
|
CureSearch supports research conducted by a network of institutions,
each of which has a team of doctors, scientists, and other specialists with the
special skills required for the diagnosis, treatment, supportive care, and
research on the cancers of infants, children, and young adults. Advocating for
children with cancer and the centers that treat them is also a focus of CureSearch. A limited selection of Spanish language publications is available.
|
National Children's Cancer Society
1015 Locust, Suite 600
St. Louis, MO 63101
Tel: 1-800-532-6459
http://www.children-cancer.com
e-mail: pfs@children-cancer.com |
The Society provides direct financial assistance and emotional
support to children with cancer and their families.
|
Outlook: Life Beyond Childhood Cancer
University of Wisconsin Medical School UW
Children's Hospital Department of Pediatrics
K4/438 Clinical Science Center 600
Highland Avenue Madison, WI 53792-4672
Tel: 608-263-6200
http://www.outlook-life.org
e-mail: jaamond@factstaff.wisc.edu
|
Outlook is an interactive information and support system for
survivors of childhood cancer and their families.
|
Pediatric Brain Tumor Foundation of the United States
302 Ridgefield Court
Asheville, NC 28806
Tel: 1-800-253-6530
http://www.pbtfus.org
e-mail: pbtfus@pbtfus.org
|
The Foundation seeks to find the cause and cure of brain tumors in
children by supporting medical research, increasing public awareness of the
disease, and aiding in early detection and treatment of childhood brain tumors.
|
STARBRIGHT Foundation
1990 South Bundy Drive, Suite 100
Los Angeles, CA 90025
Tel: 1-800-315-2580
http://www.starbright.org
e-mail: ford@starbright.org
|
The STARBRIGHT Foundation creates projects designed to help seriously ill
children and adolescents cope with the psychosocial and medical challenges they
face. The Foundation produces materials such as interactive educational CD-ROMs
and videos about medical conditions and procedures, provides advice on talking
with a health professional, and deals with other issues related to children and
adolescents who have serious medical conditions. All materials are available to
children, adolescents, and their families free of charge. Staff can respond to
calls in Spanish.
|
Colon/Rectal Cancer
|
Contact Information |
Description |
Colon Cancer Alliance
175 9th Avenue
New York, NY 10011
Tel: 1-877-422-2030
http://www.ccalliance.org
|
This is a patient-centered, colorectal cancer-specific organization that offers
support, education, research, and patient advocacy services.
|
Colorectal Cancer Network
PO Box 182
Kensington, MD 20895-0182
Tel: 301-879-1500
http://www.colorectal-cancer.net
e-mail: ccnetwork@colorectal-cancer.net
|
The Colorectal Cancer Network is a national advocacy group that raises public
awareness about colorectal cancer and provides support services to colorectal
cancer patients and their families, friends, and caregivers. Services include
support groups; an Internet chat room; e-mail listservs for survivors,
caregivers, and advocates; hospital visitation programs; and a "One on One"
service that connects newly diagnosed individuals with long-term survivors. The
Network also provides literature on screening, diagnosis, treatment, and
supportive care for colorectal cancer.
|
Kidney Cancer
|
Contact Information |
Description |
Kidney Cancer Association
1234 Sherman Avenue, Suite 203
Evanston, IL 60202-1375
Tel: 847-332-1051; 1-800-850-9132
http://www.kidneycancerassociation.org
e-mail: office@kidneycancerassociation.org
|
The Kidney Cancer Association supports research, offers printed
materials about the diagnosis and treatment of kidney cancer, sponsors support
groups, and provides physician referral information. |
Leukemia/Lymphoma
|
Contact Information |
Description |
Large Granular Lymphocyte (LGL) Leukemia Registry
H. Lee Moffitt Cancer Center and Research Institute
12902 Magnolia Drive, Suite 3157
Tampa, FL 33162
Tel: 1-800-663-3488
http://www.moffitt.usf.edu/lgl-leukemia/lgl.htm
e-mail: LGLreg@moffitt.usf.edu
|
This registry is part of the Hematologic Malignancies Program at
the H. Lee Moffitt Cancer Center and Research Institute. It collects and
studies information on people with LGL leukemia. It has also established a bank
of blood and tissue samples from people with the disease.
|
The Leukemia and Lymphoma Society (LLS)
1311 Mamaroneck Avenue
White Plains, NY 10605-5221
Tel: 1-800-955-4572
http://www.leukemia-lymphoma.org
e-mail: infocenter@leukemia-lymphoma.org |
The goal of the LLS is to find cures for leukemia, lymphoma,
Hodgkin's disease, and multiple myeloma and to improve quality of life for
patients and their families. The Society supports medical research and provides
health education materials, as well as the following services: patient
financial aid for specified treatment expenses and transportation; family
support groups; First Connection (a professionally supervised peer support
program); referrals; school reentry materials; and public and professional
education. The Society also provides audiotapes in English and some
Spanish-language publications.
|
Lymphoma Information Network
http://www.lymphomainfo.net
|
This site is devoted to providing detailed information for those
with Hodgkin's disease and non-Hodgkin's lymphoma. The site is complemented by
links to other lymphoma sites for patients and physicians.
|
Lymphoma Research Foundation (LRF)
111 Broadway, 19th Floor
New York, NY 10006
Tel: 1-800-235-6848
http://www.lymphoma.org
e-mail: LRF@lymphoma.org
|
LRF administers a research grant program, conducts public policy and
advocacy activities, oversees finance and development, and promotes
professional education.
In addition, LRF funds research and provides educational information on
lymphoma. It offers a helpline for general information on lymphoma, as well as
referrals to other resources, oncologists, clinical trials, and support groups.
A buddy program is available to match newly diagnosed patients with others who
have coped with the disease. Some Spanish-language publications are also
available.
|
Lung Cancer
|
Contact Information |
Description |
Alliance for Lung Cancer Advocacy, Support, and Education (ALCASE)
PO Box 849
Vancouver, WA 98666
Tel: 1-800-298-2436
http://www.alcase.org
e-mail: info@alcase.org
|
ALCASE offers programs designed to help improve the quality of life
for people with lung cancer and their families. Programs include education
about the disease, psychosocial support, and advocacy on issues that concern
lung cancer survivors.
|
It's Time to Focus on Lung Cancer
Tel: 1-877-646-5864
http://www.lungcancer.org |
This Web site is designed to increase awareness of lung cancer and its
increasing impact on women. It includes lung cancer facts, recent news, and
press releases.
|
Multiple Myeloma
|
Contact Information |
Description |
International Myeloma Foundation (IMF)
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607
Tel: 1-800-452-CURE (1-800-452-2873)
http://www.myeloma.org
e-mail: TheIMF@myeloma.org
|
The IMF supports education, treatment, and research for multiple
myeloma. It provides a toll-free hotline, seminars, and educational materials
for patients and their families. Although the IMF does not sponsor support
groups, it does keep a list of other organizations' support groups and provides
information on how to start a support group. A section of the IMF Web site and
some printed materials are available in Spanish.
|
The Multiple Myeloma Research Foundation (MMRF)
11 Forest Street
New Canaan, CT 06840
Tel: 203-972-1250
http://www.multiplemyeloma.org
e-mail: themmrf@themmrf.org |
MMRF supports research grants and professional and patient symposia
on multiple myeloma and related blood cancers. MMRF publishes a quarterly
newsletter and provides referrals and information packets free of charge to
patients and family members.
|
Oral and Head and Neck Cancer
|
Contact Information |
Description |
Support for People with Oral and Head and Neck Cancer, Inc. (SPOHNC)
PO Box 53
Locust Valley, NY 11560-0053
Tel: 1-800-377-0928
http://www.spohnc.org
e-mail: info@spohnc.org
|
SPOHNC is a not-for-profit national organization founded in 1991 to
address the emotional, physical, and humanistic needs of people who have oral
cancer and head and neck cancer. |
Pancreatic Cancer
|
Contact Information |
Description |
Pancreatic Cancer Action Network (PanCAN)
PO Box 1010
Torrance, CA 90505
Tel: 1-877-2-PANCAN (1-877-272-6226)
http://www.pancan.org
e-mail: information@pancan.org
|
PanCAN, a nonprofit advocacy organization, educates health
professionals and the general public about pancreatic cancer to increase
awareness of the disease. PanCAN also advocates for increased funding of
pancreatic cancer research and promotes access to and awareness of the latest
medical advances, support networks, clinical trials, and reimbursement for
care.
|
Prostate Cancer
|
Contact Information |
Description |
American Foundation for Urologic Disease (AFUD)
1128 North Charles Street
Baltimore, MD 21201
Tel: 1-800-242-2383
http://www.afud.org
e-mail: admin@afud.org
|
AFUD supports research; provides education to patients, the general
public, and health professionals; and offers patient support services for those
who have or may be at risk for a urologic disease or disorder. It provides
information on urologic disease and dysfunction including prostate cancer
treatment options, bladder health, and sexual function. AFUD also offers
prostate cancer support groups through its Prostate Cancer Network. Some
Spanish-language publications are available.
|
Prostate Cancer Foundation
1250 Fourth Street, Suite 360
Santa Monica, CA 90401
Tel: 1-800-757-CURE (1-800-757-2873)
http://www.prostatecancerfoundation.org
e-mail: Info@prostatecancerfoundation.org
|
The Prostate Cancer Foundation is a nonprofit organization that provides funding for
research projects to improve methods of diagnosing and treating prostate
cancer. It also offers printed resources for prostate cancer survivors and
their families. The mission of the Prostate Cancer Foundation is to find a cure for prostate cancer.
|
Us Too! International, Inc.
5003 Fairview Avenue
Downers Grove, IL 60515
Tel: 630-795-1002 (in the Chicago area)
1-800-80-US TOO (1-800-808-7866)
http://www.ustoo.org
e-mail: ustoo@ustoo.com |
Us Too! is a prostate cancer support group organization. Goals of
Us Too! are to increase awareness of prostate cancer in the community, educate
men newly diagnosed with prostate cancer, offer support groups, and provide the
latest information about treatment for this disease. A limited selection of
Spanish-language publications is available.
|
Skin Cancer and Melanoma
|
Contact Information |
Description |
Melanoma Education Foundation
7 Jones Road
Peabody, MA 09160
http://skincheck.com
e-mail: MEF@skincheck.org
|
This Web site provides information about melanoma, emphasizing the
importance of monthly self-examination of the skin to detect melanoma while it
is thin and curable.
|
The Melanoma Patients' Information Page
PO Box 38
Cloverdale, CA 95425
http://www.mpip.org
e-mail: admin@mpip.org |
Designed for melanoma patients and melanoma investigators, this Web
site includes published results of clinical trials in chemotherapy, vaccines,
and gene therapy. It also has a database of research abstracts and a bulletin
board for questions and answers.
|
The Melanoma Research Foundation
23704-5 El Toro Road, 206
Lake Forest, CA 92630
Tel: 1-800-673-1290
http://www.melanoma.org/
e-mail: mrf@melanoma.org
|
The Foundation supports medical research for the treatment of melanoma and acts
as a resource for melanoma patients, their families, and friends.
|
The Skin Cancer Foundation
PO Box 561
New York, NY 10156
Tel: 1-800-SKIN-490 (1-800-754-6490)
http://www.skincancer.org
e-mail: info@skincancer.org
|
Major goals of The Skin Cancer Foundation are to increase public
awareness of the importance of taking protective measures against the damaging
rays of the sun and to teach people how to recognize the early signs of skin
cancer. The Foundation conducts public and medical education programs to help
reduce the incidence of skin cancer.
|
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.
Disability and Discrimination
|
Contact Information |
Description |
Equal Employment Opportunity Commission (EEOC)
1801 L Street, NW
Washington, DC 20507
Tel/TTY: 1-800-669-6820
http://www.eeoc.gov
|
The EEOC is the Federal agency that coordinates the investigation of employment
discrimination. People can bring complaints against employers if they believe
they have experienced discrimination.
|
Federal Laws Prohibiting Job Discrimination: Questions & Answers
http://www.eeoc.gov/facts/qanda.html
|
This fact sheet can answer your questions about who is protected by
the ADA, workplace accommodation, and other important information.
|
The ADA: Your Responsibilities as an Employer
http://www.eeoc.gov/facts/ada17.html |
This fact sheet describes the responsibilities of an employer
toward his or her employees with disabilities.
|
U.S. Department of Justice (DOJ)
950 Pennsylvania Avenue, NW
Washington, DC 20530-0001
Tel: 1-800-514-0301
http://www.usdoj.gov |
The DOJ provides information to assist persons with disabilities
with legal issues, questions about the ADA, mediation services, and other
employment issues.
|
U.S. Department of Labor (DOL)
Office of Disability Employment Policy (ODEP)
1331 F Street NW, Suite 300
Washington, DC 20004
Tel: 202-376-6200
TTY: 202-376-6205
http://www.dol.gov/odep/welcome.html
|
This agency provides fact sheets on a wide variety of disability issues,
including discrimination, workplace accommodation, and legal rights.
|
Job Accommodation Network
West Virginia University
PO Box 6080
Morgantown, WV 26506-6080
Tel/TTY:1-800-526-7234
http://www.jan.wvu.edu
|
This service of the U.S. Department of Labor offers ideas on how to
change a workplace to make it easier for an employee with a disability to do
his or her job. |
Legal Assistance
|
Contact Information |
Description |
National Employment Lawyers Association (NELA)
44 Montgomery Street, Suite 2080
San Francisco, CA 94104
Tel: 415-296-7629
http://www.nela.org |
NELA can help find a lawyer experienced in job discrimination
cases. |
Local Bar Association
Check your local phone book.
|
Many local bar associations provide information about how to find a
lawyer and learn about legal assistance in your local area.
|
Legal Aid or Legal Services Group
Check your local phone book.
|
Many cities have legal aid groups that help provide free or
low-cost legal services. |
Other Legal Information
|
Contact Information |
Description |
American Cancer Society (ACS)
1599 Clifton Road, NE
Atlanta, GA 30329-4251
Tel: 1-800-ACS-2345 (1-800-227-2345)
http://www.cancer.org
|
Your can contact ACS for legal information.
|
Cancer Care, Inc., National Office
275 Seventh Avenue
New York, NY 10001
Tel: 1-800-813-HOPE (1-800-813-4673)
http://www.cancercare.org
e-mail: info@cancercare.org |
Cancer Care has information on a wide range of cancer topics,
including employment issues.
|
National Coalition for Cancer Survivorship (NCCS)
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910-5600
Tel: 1-877-NCCS-YES (1-877-622-7937)
http://www.canceradvocacy.org
e-mail: info@canceradvocacy.org
|
The NCCS provides cancer information, including a book titled Working
It Out: Your Employment Rights as a Cancer Survivor. |
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