Personal Stories, Research
By: Susan G. Komen
After serving as a public policy advocate and volunteer for Susan G. Komen for many years, I decided to focus my interest in research advocacy and joined Advocates in Science (AIS). The AIS community is very fulfilling and provides a wide range of educational and training opportunities as well as opportunities for service as a patient advocate in a variety of settings.
In January of 2012 my role as an advocate changed when I was diagnosed with triple negative breast cancer (TNBC). My AIS experience and education helped me understand the implications of the diagnosis and made decisions about my care easier. During one visit, my breast oncologist remarked, “Peggy, I think you know too much.” But honestly he was pleased with the fact that I was engaged in my treatment.
In May 2012 I was invited, through my AIS membership, to join a consensus panel convened by Monica Morrow, MD, a prominent breast surgeon, and Meena Moran, MD, a highly respected radiation oncologist. The Komen-funded panel addressed the issue of re-excision - a second surgery after lumpectomy to achieve wider or cleaner margins. Participants on this consensus panel included a diverse group of distinguished members of the breast cancer medical community, each representing a different area of breast cancer treatment and research.
Dr. Nehman Houssami, MD, PhD, from the University of Sydney, revisited her previous meta-analysis on re-excision using the most current data and provided updated results to the panel. Other members of the committee also gave presentations in order to provide multiple perspectives for the panel to consider.
The face-to-face meeting took place in July 2013. The conversation was lively and everyone was engaged in the question and the process. I was struck by the warmth of the group and their extreme desire to improve the treatment experiences of their patients. All expressed the need to reduce the number of times patients undergo surgery and the severity of surgery that some patients with early stage disease choose. We hoped our efforts would help doctors and patients to better understand the lessons learned from research dealing with re-excision and, frankly, were concerned that women were turning to mastectomy when a lumpectomy followed by whole breast radiation was the better option for many women with stage I or II breast cancer. The meeting was well organized and focused on reaching a consensus. By the end of the second day, the panel was in agreement and had developed the recommendations and messaging for doctors to help guide decision making processes regarding re-excision.
The article detailing the panel’s recommendation has been accepted by several medical journals. The response from the medical professional societies has been positive and I hope doctors will adhere to the recommendations. In addition, in my role as an AIS, I hope we can add questions about re-excision to Komen educational materials so patients facing more surgery can talk with their doctors about the correct treatment decisions. This experience was rewarding both as an advocate and a breast cancer patient. It was encouraging to see the dedication this group of doctors had for improving the journeys of their breast cancer patients. As a Komen volunteer, it was wonderful to see the respect the group had for Komen’s work and their gratitude for the Komen funding. As an AIS member I am thankful for the many opportunities afforded our members. Training advocates to participate in opportunities such as the consensus conference is just one small part of AIS.
Read more about Peggy Johnson.
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