My friend Tom Sellers has fled Boston and taken a new position as President & CEO of the National Coalition for Cancer Survivorship. (Locals here will know that Tom led the fundraising, community relations, and development activities for a $30 million American Cancer Society project to build a 50,000 square foot Hope Lodge in Boston to provide free lodging to over 1,000 cancer patients annually. Before that, he worked at the United Way and in the MA state government.)
He is very excited about this and tells me that there are nearly 12 million cancer survivors living in the United States and that NCCS is the oldest survivor-led cancer advocacy group in the country. This group advocates for quality cancer care for all Americans and provides tools that empower people affected by cancer to advocate for themselves. It was founded by and for cancer survivors more than 20 years ago. Its governance requires at least half of the Board members to have had a cancer diagnosis some time in their lives, and many staff members are cancer survivors, so they speak from experience.
Tom says, "One of our newest initiatives is the Journey Forward program, which is targeted to health care professionals and patients. Upon completing treatment, many cancer survivors find themselves wondering, “What’s next?” The Journey Forward program, is a collaboration of the NCCS, Wellpoint, UCLA Cancer Survivorship Center, and Genentech. It helps survivors with the transition from uncertainty to the next stage of survivorship through the use of treatment summaries and follow-up care plans that summarize cancer treatment and give clear steps for follow-up care and monitoring.
"Cancer care plans put survivors in a better position to advocate for themselves, monitor their health, and participate in decisions about their future care. Journey Forward’s custom-made Survivorship Care Plan Builder is available to any oncologist, and the electronic Medical History Builder allows patients to easily record their own health history. Journey Forward’s survivorship toolkit currently offers templates that include information specific to survivors of breast and colon cancer, and a generic model that is applicable to survivors of many cancer types will soon be available.
"The program is completely free, and more information about how you can develop a plan is available here."