Cancer Support Community


Our Mission

 
As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC) is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. CSC achieves its mission through three areas: direct service delivery, research and advocacy. The organization includes an international network of Affiliates that offer the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research and Training Institute conducts cutting-edge psychosocial, behavioral and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington, D.C. and across the nation.
 

Our History

 
In 1982, Harold and Harriet Benjamin transformed the way our culture faces cancer. Harriet, a cancer survivor herself, sought to create an organization that would provide social and emotional support to not only cancer patients, but also to families, friends, and caregivers. The Benjamins strongly encouraged psychosocial care because they believed in a strong correlation between emotional and physical well-being. Thus, the first walk-in community facility of its kind, The Wellness Community (TWC), was founded in Santa Monica, CA as an outlet for those suffering cancer to receive appropriate support. One of the biggest advocates of TWC was late comedian and “SNL” cast member Gilda Radner. When diagnosed with ovarian cancer in 1986, Radner sought support from TWC. She called for similar support-focused organizations to be available not only on the West coast, but everywhere. Unfortunately in 1989, Gilda passed away.
 
In honor of Gilda’s legacy, her husband Gene Wilder, and Joanna Bull, along with friends and family, founded Gilda’s Club in 1991. The first local Affiliate organization, Gilda’s Club New York City (GCNYC), opened its iconic Red Door in 1995. Since then, additional locations have opened worldwide, incorporating larger cities (Chicago, Detroit, Montreal, Toronto), smaller cities (Fort Lauderdale, Quad Cities, Hackensack, Rochester) and locations in between (Nashville, Grand Rapids, White Plains).
 
In 2007, the Institute of Medicine (IOM) released Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, a groundbreaking report on the importance of addressing the social and emotional needs of individuals facing cancer, rather than just their physical needs—an idea The Wellness Community and Gilda’s Club Worldwide had both been implementing for many years. This eventually sparked merger discussions between the two organizations, which aimed to increase operating efficiency and reduce overall costs in order to provide greater resources and influence. In 2009, The Wellness Community and Gilda’s Club Worldwide merged, becoming a united organization under the name Cancer Support Community. As a result of this union, the Cancer Support Community is now one of the largest providers of cancer support worldwide, with Gilda’s Club and Cancer Support Community Affiliate locations across the country. With nearly double the footprint, CSC has increased its capacity to reach even more people touched by cancer.
 
Cancer Support Community has become one of the leading organizations in cancer support – opening various affiliate organizations throughout the country and the world. CSC has remained dedicated to its mission of providing emotional support and psychosocial care for individuals impacted by cancer, including their families and friends. The organization has developed the Cancer Support Helpline, the Cancer Experience Registry and greatly expanded the Frankly Speaking About Cancer educational materials and radio shows. Further, CSC established the Research & Training Institute and the Cancer Policy Institute, and piloted an inaugural hospital-integrated model. Through all of these developments, CSC has worked to further expand its services so that “no one faces cancer alone”.
 
 

The Cancer Support Community National Office

734 15th Street, NW
Suite 300 Washington, DC 20005
 
Phone: 202-659-9709
Email: help@cancersupportcommunity.org

 


What is Cancer?

 
Cancer is the medical term we use to talk about an array of diseases that all started the same way: a normal cell went haywire and began growing and dividing uncontrollably.
 
What causes a cell to stop acting the way it should? Every time a cell divides there is the potential for errors to develop in the letter code that makes up the cell’s genetic material (DNA). Sometimes the checkpoints in the cell that make sure DNA are copied correctly catch these errors, and send a message for the cell to self-destruct. Other times, the immune system notices something is wrong, and kills the cell. Or, the cell may just keep on dividing, passing on that mistake to its daughter cells.
 
A cell can function normally with a certain number of mutations. But at some point, the mutations take over and make the cell goes haywire. This is part of the reason why your risk of getting cancer increases as you get older—your cells have had more time to collect mutations and pass them along to their daughter cells.
 
As these abnormal cells grow and divide they can form into a tumor. This is what happens when cancer begins in, for example, the breast, colon, or lung. Blood cancers, like leukemia, typically don’t form this type of tumor. In the process of cancerous, a cell also can develop the ability to push into and invade other parts of the body where it doesn’t belong. This invasion can be limited to the organ where the cancer developed. Or, the cancer cells may spread—metastasize—to other parts to the body.
 

Who Gets Cancer?

 
We all have cells in our body that have some errors, or mutations. These errors can occur simply because the cell makes a mistake—and that can happen to anyone’s cells. Many things scientists refer to as “environmental risk factors for cancer” also can cause these mutations to develop. In cancer, “environmental” refers to anything that is not genetically inherited that increases cancer risk, such as obesity, smoking and exposure to certain chemicals. The environmental factors have a genetic impact because they cause genetic damage that increases cancer risk. You can also be born with a genetic mutation that increases your risk for developing cancer. In this situation, a cell typically needs to acquire fewer environmental mutations before it begins to go haywire.
 
There are known cancer risk factors. But the surprising thing about cancer is that many people who get cancer do not have any of these risk factors and other people who have many of them don’t. Scientists want to know not only why some people with few risk factors get cancer but also why others with many risk factors do not.

 

Cancer Support is an integral part to treating the whole patient. Learn why support is so important to an integrated approach to your care.
 
Whether you are someone with cancer or someone close to you has cancer, it can be very helpful to talk with others in a similar situation who will understand what you are going through. Support from others who understand can help to improve your ability to cope, your ability to feel more into control over your situation and give you a sense of hope.
 
You may feel that support groups or counseling are not for you – or the idea of speaking with strangers would be uncomfortable. The truth is, even if your friends and family are supportive, they have their own experiences that are unique to them. This is a time when emotional and social support can help you find ways to talk about and understand what you’re going through.
 
The Cancer Support Community can help connect you to a community of support. People who have been affected by cancer often feel anxious, sad angry or even confused about what they are feeling. That’s OK and normal. Part of the challenge is accepting that you need support. You shouldn’t have to feel you have to do this alone. We can help you get connected to support groups, helpful resources, one-on-one counseling, online bulletin boards and other ways to connect with others whether it be face to face, online or over the phone.

What Now?

 
When you have a cancer diagnosis, it is normal to feel frightened, sad and worried. People who have had cancer often talk about experiencing three feelings: loss of control, unwanted aloneness and loss of hope.
 
Here you'll find helpful information, resources and support services to help you when you have a cancer diagnosis. The resources, tips and guides listed in this section can help you gain a sense of control as you face decisions about your treatment and care. We can help you navigate the health care system so you can manage the tests, doctor's appointments, and insurance issues.
 

An Important First Step When You Have a Cancer Diagnosis

 
Here at the Cancer Support Community you can find that you are not alone, regain a sense of control, and learn there is always hope.
 
The next few weeks will be a busy time, as you face decisions about your treatment and care. Navigating the health care system – the tests, doctor’s appointments, figuring out insurance and more – can feel overwhelming. But, it is ok to ask for help.
 
One of the first things to do is think about who in your life is a helping presence. It might be your spouse or partner, friends, faith community, support group or co-workers. Make a list of specific ways they can help.
 
If you are unsure of what to ask people to do, below are some questions to consider:
 
  • Who would I like to talk with about treatment decisions? Or join me at appointments? 
  • Who can help me with practical support, such as figuring out work leave, meals, family care, driving or cost of care questions? 
  • Who can help serve as a point person to keep other people updated?
  • Are there other people in my life that will also need help? Who can help them? 
People on your health care team, particularly a nurse or social worker, can help you find resources for social, emotional and practical support.
 

Choosing Your Health Care Team for Cancer Treatment

 
An important decision you will make about your cancer treatment is choosing a doctor, a team and a cancer center that has the expertise to treat your cancer.
 
As you learn about your cancer diagnosis and treatment options, ask your doctor how soon you need to make a treatment decision. You may seek a second or even third opinion. Being able to talk openly and feel comfortable with your doctor, nurse, social worker, and other office or health care team staff is important. Here are some questions to consider asking as you choose your team:
 
About your cancer diagnosis:
 
  • What type of cancer do I have?
  • What stage is my cancer? What does that mean?
  • What symptoms of cancer might I experience?
  • What other types of tests will I need? 
  • Where can I get a second opinion?
 
About your cancer treatment:
 
  • How much experience do you have in treating my specific type of cancer? Are you board certified as an oncologist or are you certified in another specialty?
  • Are you associated with a major medical center, medical school or comprehensive cancer center?
  • What are the treatment goals (is it to cure the cancer, control the cancer, or relieve symptoms)?
  • Which treatment do you recommend, and why? 
  • Are there treatment options are available for me?
  • What are the risks and benefits of each treatment option?
  • What side effects might I experience, and how can they be managed or prevented?
  • What treatments and other services are covered by my insurance? What options are there to help cover costs? 
  • Where can I get a second opinion?
  • Are there any clinical trials here or somewhere else that might be appropriate for me?
  • What emotional and practical support services are available to me and my loved ones?

 


About the Research and Training Institute (RTI)

 
Launched in 2008, the Research and Training Institute (RTI) is the first institute dedicated to cancer related psychosocial, behavioral and survivorship research and training. The Institute seeks to examine the critical role of emotional and social support in improving the lives of people facing cancer, and to share what we learn with the broader cancer community. Our goal is to assure that patient and caregiver voices are heard by bringing scientific rigor and evidence-based research together with innovative approaches to collecting, evaluating and disseminating our findings. We bridge the gap between research and practice by using the information and insight from our community to improve Cancer Support Community programs and raise awareness of emotional and social issues with health care providers and policy makers.
 

Cancer Experience Registry

 
The Cancer Experience Registry is a unique online community that brings people impacted by cancer together to make their voices heard, connect with each other, share experiences, learn from and help others. Launched in 2013, the Registry now has over 8,000 participants, both patients and caregivers. The Registry is open to any individual impacted by cancer, at any stage of the journey.
 

Make A Difference. Share Your Cancer Experience

 
10,962 People and Growing
 
Nearly 11,000 people have joined the Cancer Experience Registry to share their unique experience to help improve the quality of life for you and those you care for.
 
The Cancer Experience Registry is a unique online community that brings people impacted by cancer together to make their voices heard, connect with each other, share experiences, learn from and help others.
 
  • Launched in 2013, the Registry now has over 10,000 participants, both patients and caregivers. 
  • The Registry is open to any individual impacted by cancer, at any stage of the journey. 
  • It is free and confidential. 
 
In addition to the general Registry, there are currently 11 special programs for people with specific cancer types, and for caregivers.
 

Why Join?

 
By sharing your unique experience with cancer, you can help to improve the quality of life for you and those you care for.
When you — and thousands of others like you — share your insights, we can see patterns and gain insights that enable us to provide helpful information to you about the social, emotional, and financial challenges of a cancer diagnosis.
 

Joining is Simple

 
Participants can join the Cancer Experience Registry by filling out a simple registration form, and then a more detailed questionnaire. This questionnaire is a tool to think about and identify the emotional and social issues that impact an individual’s cancer experience.
 

Help Us Improve Care for People with Cancer and their Caregivers

 
The Research and Training Institute uses the information from these surveys to improve the care for people with cancer and their caregivers, and to develop better programs and services for our community.