Along with Chief Program Officer and Deputy Chief Executive Stacy Lewis, Ex Officio Board President Anna Cluxton, Medical Advisory Board members Dr. Ann Partridge and Dr. Judy Garber, I attended the BCY1 Breast Cancer in Young Women Conference  November 8-10, 2012 in Dublin, Ireland. This three-day conference directed to medical practitioners and researchers focused solely on issues pertinent to young women (40 and under) diagnosed with breast cancer. Organized by the European School of Oncology (ESO), approximately 300 medical professionals and patient advocates from over 47 countries attended. YSC also presented four posters at this event which summarized our survey results and work on the Long-Term Survivor Guide, Post-Treatment Navigator , Metastatic Resource Kit , and Healthcare Provider Educational Program. One of our submissions, titled “Young and Metastatic: Addressing the Unique Needs of Advanced Breast Cancer in Young Women,” was selected as a best abstract and presented orally to the entire conference by Stacy Lewis.
The conference debated whether the biology of breast cancer in young women is unique and whether more aggressive treatments should be ordered solely because a woman is “young.” While all speakers acknowledged that young women are more likely to be diagnosed with aggressive forms of breast cancer and have a worse prognosis than their older counterparts, it is not clear why this is occurring. Some speakers believed that the tumor itself is different in younger women, while others believe that the tumors are the same, but it is the surrounding microenvironment of the young woman which is different: a “seed” vs. “soil” dispute. We heard presentations and updates on hereditary breast cancer, emerging technologies, surgery/radiotherapy/chemotherapy, use of bisphosphonates in the adjuvant setting, and metastatic disease. Quality of life issues including fertility, early menopause symptoms, relationship issues and pregnancy were also examined.
A common theme that surfaced repeatedly during this conference: we just don’t know enough about this population of young patients and the best ways to treat them. In the young metastatic population in particular, the scarcity of data and the reluctance of trial sponsors to include younger women in their studies was noted.
While many examples of research needed in this population were shared throughout the conference, one quandary in particular caught my attention because it is a decision that almost all young women diagnosed with breast cancer must confront: lumpectomy + radiation vs. mastectomy. Research shared at BCY1 said that with lumpectomy and radiation, younger women have local recurrence rates 9.2% higher than older women. Based on this research, mastectomy is commonly recommended for younger patients. However, the speaker was not aware of any research that looked at the recurrence rate with mastectomy in younger vs. older women and compared that recurrence rate to lumpectomy and radiation. It may be that local recurrence rates are higher in young women, no matter which surgery is chosen. It is simply not clear. In addition, although new radiation technologies should be safer, it will take time to determine whether this is true, especially for young women who will have a longer lifespan during which long-term side effects may arise.
Two aspects of this conference reassured me. First, it was encouraging to attend a high-level scientific conference where the focus was solely on young women and where quality of life issues were deemed worthy of scientific discussion. Second, it was wonderful to hear the praise from advocates and the medical community about the value of YSC and the good work we do.
BCY1 also reaffirmed for me the value and need for our upcoming YSC Research Think Tank. In 2001, YSC organized the first medical research symposium focused on young women and breast cancer. The resulting white paper showed where gaps in knowledge existed. But, these gaps persist today. A large amount of research is still desperately needed in our population of young women diagnosed with breast cancer. We simply must learn more so that our constituents have the information they need to make their best, informed choices. For our Think Tank, we have assembled teams of medical professionals and skilled advocates to focus on six core issues pertinent to our population: risk factors unique to young women; pregnancy-associated breast cancer; treatment; metastases; fertility; and quality of life/survivorship. These workgroups are currently assessing what we do and do not know in these six target areas. At our in-person Think Tank meeting in February 2013, these workgroups will meet in person to debate and strategize. The outcome of this meeting will be a list of high priority research questions that will be published and presented to the research community, with the goal of improving the quality and quantity of life for young women diagnosed with breast cancer.