When you talk about breast cancer, much of the discussion is about treatment of the disease, not on what comes next for survivors.
But a local nonprofit, Back in the Swing, has been pushing for years to get care programs in place that help breast cancer survivors after the cancer is gone, and their work is paying off.
The Commission on Cancer of the American College of Surgeons has announced that survivorship care and follow-up care plans will be required by January 2015 at all cancer centers that want to be accredited by surgeons’ group.
Back in the Swing co-founder and breast cancer survivor Barbara Unell of Leawood said that the survivorship care requirement came up in part because of a pilot program in survivorship care partly funded by Back in the Swing.
“There has been this build-up of science and evidence and research — some of which we funded and some by the National Institutes of Health — that has demonstrated the efficacy and the benefits of this care,” Unell said.
In addition to helping fund research in survivorship care, Back in the Swing has helped build an upcoming course at Johnson County Community College that will help both survivors and health care providers learn about successful methods for such care.
“The courses at the college are Back in the Swing’s way of helping to educate the consumers, survivors and families, as well as the providers, so that … when this is required, everyone will not only understand the importance of it, but understand the priority of it,” Unell said.
The guiding text for the course will be the Back in the Swing Cookbook. The cookbook isn’t just about finding the right foods to help a survivor regain her strength, although that is part of it. Included in the text is information about lifestyle choices and current research in the field.
Two versions of the class will happen at different times — one for survivors and their families and friends and one for health care providers. Both will take place in one half-day session each.
Providers such as nurses, social workers, counselors and registered dieticians will be able to use the class as part of their required continuing education credits.
The class costs $29, which is slightly less than the retail price of the cookbook, a copy of which is included in the course price. The program has received underwriting from the college and Friends with Taste, a college benefactors group.
The course will feature speakers explaining a variety of subjects, such as the relationship between a patient’s primary care doctor and oncologist, regaining energy through nutrition and exercise, using meditation and yoga to promote relaxation and positive emotions and more.
In the providers’ session, speakers will also address how to deliver survivorship care, what methods providers might use and where and when different aspects of the program are appropriate for patients.
Many issues arise in the conversation about what happens after a person is free of cancer, both in terms of physical and mental health, and Unell hopes the cookbook and the course makes those issues a bigger part of the conversation.
She’s quick to point out that the group doesn’t want to get in the way of a doctor’s care, but to supplement it.
“We don’t make the tires; we just make the tires stronger. We don’t provide direct care,” Unell said. “We’re here to strengthen the care that’s provided from oncologists and hospitals.”
Though this course is focusing on breast cancer survivors, Unell said that similar programs for prostate and lung cancers are on the horizon.
The Kansas City area has been at the center of this innovation. For one, Unell said, local publisher Andrews McMeel asked her to put together the cookbook. That’s not where in ends, though.
“When we started this work in 2000 on a grassroots level, the national conversation was not about getting educated in the Back in the Swing lifestyle or requiring survivorship care as part of your clinical care,” Unell said. “Our community listened, identified, embraced and understood.”
The class session for survivors will take place from 8 a.m. to 1 p.m. Sept. 27. The session for providers will be from 8 a.m. to 1 p.m. Oct. 18. To register, go to www.jccc.edu.