San Antonio Breast Cancer Symposium ignores survivorship

Well, we are here again at the San Antonio Breast Cancer Symposium with some 7,500 breast cancer clinicians and advocates from more than 90 countries – and not one, not one oral presentation out of 43 has to do with survivorship. There is one presentation on exercise that is getting some play, but come on. Nothing in 74 papers accepted for the ongoing clinical trial session relate to survivorship, and of the 1,091 posters (these are literally large posters with study information detailed), there are only a handful that address survivorship and/or quality of life. The mission of the meeting, according to the home page, is to be "an international scientific symposium for interaction and exchange among basic scientists and clinicians in breast cancer." In another place it says the meeting is "to provide state-of-the-art information on the experimental biology, etiology, prevention, diagnosis, and therapy of breast cancer and premalignant breast disease, to an international audience of academic and private physicians and researchers." I guess that leaves survivorship out, but you would think someone would be asking what the outcomes are of the treatments down the road.There is a full feature in The Wall Street Journal this week titled "The Next Front in Cancer Care" that explores the survivorship issues we all face. It's exciting to see this kind of headlines for those of us who focus our time and energy on life after treatment. It is also exciting to once again see the full complement of advocates at this year's meeting. For the past 16 years the Alamo Breast Cancer Foundation, an all–volunteer advocacy organization in San Antonio, has brought women from all over the world to learn more about the disease. This year 23 advocates are on site, each one assigned a "hot topic" about which they will become an expert. Each evening of the symposium the advocates attend a session with the lead researchers in attendance where the day's studies are discussed and synthesized for the lay audience.I had lunch with four of the advocates today, and it reminded me how powerful advocacy can be, and how a diagnosis can mean a totally different life. Each of the four women had a career before breast cancer turned them into full-time advocates. You could say it was cancer as a career move.Lori Baran was a medical technician before her diagnosis of DCIS in 2008. She decided she wanted a bilateral mastectomy, which was her only treatment. In 2010 she felt a lump under her arm in her remaining lymph nodes. It was malignant, as were all the remaining lymph nodes, 38, on the right side. They were removed, but scans showed spots on her liver too. Chemotherapy took care of the liver spot, and she was declared NED – until 2011 when it was a repeat performance on her left side. She was given two years to live even if she chose the drastic treatment offered her. Instead she found an integrative oncologist who combined a number of components including changing her diet – she is now in remission. "Women have to advocate for themselves first," she says. Donna Kaufman was an Army officer serving in Israel for a number of years and says she was part of a large cancer cluster in that country, which has a high rate of breast cancer. She had returned to the U.S. with her husband and two children just before finding out she had breast cancer. Her diagnosis and treatment left her feeling like her old job in public relations and marketing was not what she wanted. "It's hard to get excited about selling cereal when you've been through breast cancer." In response she turned her attention to lobbying for the state of Virginia and at the federal level where she has worked on projects such as the bill in Virginia for parity for oral chemotherapy drugs. It's in that work that Donna feels she is now contributing. Meredith Parks says that as a criminal defense attorney she used to dread hearing that DNA was involved because it usually meant her client was guilty. "Now I know that DNA has a much greater impact." Diagnosed age 47 only two years ago with triple negative breast cancer, Meredith, the mother of four, volunteers one-on-one with patients at Johns Hopkins, which is near her Maryland home as well as advocating for research dollars. She has found a new passion with advocacy, serving on a number of panels for Susan G. Komen, AACR and NBCC, she says. Deborah Evans, a Michigan resident until a recent move to California, is four and a half years out from her diagnosis of triple negative breast cancer at age 47. Educated in biological sciences in England before moving to the U.S. she loved teaching 7th grade science before her diagnosis turned her into a full time advocate. She would like to see support for women in their 40s who fall between the young survivor and the older population, but her goal is simple. "I want a cure," she says. By the time they leave San Antonio, these women will be armed with additional information to take to their communities to pass on to newly diagnosed women.With this year's advocates, The Alamo Breast Cancer Foundation has trained more than 500 women, who return home armed with new information and new passion to help other women face the disease.