A cancer diagnosis can be very overwhelming whether you’re a patient or a caregiver. But the Cancer Support Community (CSC) is here to help in all kinds of ways – for free! Learn more with my interview with their Executive Director, Julia Forth:
How and when did the Cancer Support Community get started?
The Cancer Support Community (CSC) was founded in 1982 by Dr. Harold and Harriet Benjamin. Originally known as The Wellness Community, the Cancer Support Community merged in 2009 with Gilda’s Club to form the Cancer Support Community. Los Angeles is where it all began and the Cancer Support Community Los Angeles (CSCLA) is proud to now be a part of an international affiliate system of almost fifty locations. Harriet Benjamin had breast cancer in 1972 and was the inspiration for the founding of this unique organization. At that time, there was no support, no one wanted to talk about cancer, and Dr. Benjamin and Harriet created CSC to encourage those impacted by cancer to participate in their treatment and enhance the possibility of recovery.
What is the Patient Empowerment Model and what kinds of activities does it encourage?
The Cancer Support Community programs are based on a Patient Empowerment Model developed by Dr. Benjamin. This unique CSC program model defines a series of actions, behaviors, and attitudes that people with cancer can utilize to not only improve their quality of life, but also to enhance the possibility of recovery. For caregivers and loved ones, these actions and behaviors can help them to learn to care for their own physical and emotional health as well as their family member with cancer.
Through our Patient Empowerment Model, Cancer Support Community participants learn to take specific steps to become empowered, to make informed decisions about their physical and emotional health and well-being, and to take actions to improve their quality of life. Strategies and techniques include viewing oneself as a survivor, not a victim; making one decision at a time; gathering resources; seeking support from other survivors; preparing questions and communicating regularly with doctors and other members of the healthcare team; engaging in social activities and staying involved with family and friends; practicing stress reduction techniques and exercising; seeking relaxation and quiet time as needed; and always maintaining hope. Individuals can use the skills they learn at CSCLA to enhance their health and well-being through and beyond the cancer experience
What is CSC’s #1 goal and do you achieve this goal?
CSCLA exists so that no one should face cancer alone. Since 1982 we have been fulfilling this goal for people with cancer and their families in Los Angeles and via our international chapters—over 1Million people annually are served!
Why does CSC stress the importance of psychosocial health so much?
Friends and family don’t necessarily know what the cancer patient is going through physically or emotionally. That’s why having access to a community with professionals and survivors is critical to overall wellness. Also, friends and family experience compassion burnout and suffer from stress-related health concerns while caregiving. Families need help, too! The medical community has caught up to what CSC has always known—that our offerings are an integral part of cancer care. In 2007, Institute of Medicine’s (IOM) report stated that “. . . it is not possible to deliver good-quality cancer care without addressing patients’ psychosocial health needs . .” In 2012, standards developed with strong input from CSC, were released by the American College of Surgeons Commission on Cancer for the delivery of “patient-centered care”, one key area of which is addressing and improving cancer survivors’ quality of life.
What kinds of programs does CSC offer and how much do they cost?
Cancer Support Community offers free of charge services to anyone impacted by cancer. These services include group support and individual counseling; healthy lifestyle classes; education; family programs; and social activities.
What are some of your favorite stories of people you’ve helped?
Our qigong instructor is a brain cancer survivor since the year 2000. He still participates in our brain tumor group to give inspiration to those who walk in our doors. He feels it is important to pay it forward, to be there for people who might otherwise think there is no hope. He was amazed at the courage of the people he met when he first arrived at CSC. That is the spirit of the Cancer Support Community—patients and families supporting each other, giving each other strength and hope.
What types of events can people in your area get involved in? What would draw patients, survivors and caretakers to participate?
We welcome volunteers from all walks of life. There are many things that they can get involved in—from front desk reception, to special events, to being ambassadors to the community-at-large. Our program’s breadth and depth is what attracts those in need—there is something for everyone—from meditation, Pilates, yoga, groups led by licensed psychotherapists, counselling, writing classes and movies—everything to keep those impacted by cancer strong in mind, body and spirit.
What is Frankly Speaking About Cancer and where can people tune in?
Frankly Speaking About Cancer® is CSC’s landmark educational program on a variety of topics with materials, professionally-led workshops and a weekly radio show hosted by CSC’s CEO, Kim Thiboldeaux. Check out this link to tune in to the Frankly Speaking radio show: https://www.cancersupportcommunity.org/Radio-Show2
Headquartered in Washington, D.C., our national office has also developed many initiatives designed to inform policy makers and researchers on what patients and families value. Check out the Cancer Experience Registry to be a part of one of these exciting initiatives! https://www.cancerexperienceregistry.org/
Where does your organization get most of its funding & donations?
Each Cancer Support Community is its own 501c3 nonprofit organization. All local money stays local. Cancer Support Community Los Angeles get its funding via individuals, corporations, foundations and through special events. We also welcome those who would like to give through other ways by volunteering or providing community connections—all is appreciated!
What’s one piece of advice that you’d give to cancer patients?
Please know that you are not alone and even if you are not a “group” person, know that CSC can be used in any way you choose. If you’d like to go to yoga, that’s fine. If you’d like to do fifteen things per week—groups, classes, workshops–that’s fine, too. Everyone’s experience is unique and CSCLA is here to support those impacted by cancer in whatever way they need. Why not check it out? – it’s free, and its services of psychosocial support have been shown to improve quality of life and, in some cases, increase the chance of survivorship.
What’s one piece of advice that you’d give to caregivers of cancer patients?
I was a caregiver for my father who died of colon cancer. If there is one thing that I can say, and that I’ve heard from other caregivers at CSCLA, it is that we tend to not take care of ourselves. Our quality of life diminishes as we worry and spend much of our time taking care of our loved ones. Don’t forget to take care of yourself. It is very stressful to be a caregiver. CSCLA can help relieve anxiety so that caregivers can maintain a balanced life and be there for themselves and their loved ones.
Where can patients find out more?
Cancer Support Community Los Angeles is located at 1990 South Bundy Drive, Suite 100, Los Angeles, CA 90025. We offer support at local hospitals, parks and other community-based organizations. Please call 310-314-2555 or visit www.cancersupportla.org for more information. Check out our national website for a list of locations around the country at www.cancersupportcommunity.org