Abstract

117 Background: Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to young women and breast cancer. In May, 2014, YSC released its Research Agenda which identified the most pressing research questions that must be answered in order to improve the quantity and quality of life for young women affected by breast cancer. Methods: This Research Agenda arose out of an almost two-year-long process created and facilitated by YSC, called the Research Think Tank (RTT). YSC assembled doctors, researchers and advocates to focus on six areas of particular importance to its young constituents: risk factors; treatment; metastasis; quality of life; fertility; and pregnancy. Results: Through the work of the RTT, YSC assessed the current state of knowledge as well as existing gaps in each of the six identified areas. While work is needed in all areas, there have been recent updates and progress regarding treatment and fertility. Additionally, quality of life studies examine the uniqueness of breast cancer in young women, although application of this knowledge through tested interventions, decision aids, or guidelines and tools for physicians are still lacking. Aspects of pregnancy during breast cancer and after breast cancer have been studied but many open questions remain. There has been little progress in understanding why so many breast cancers are diagnosed in the postpartum period, why they tend to be more aggressive, and what can be done to prevent or treat it. Research examining metastasis in young women is rare. Most research focuses on postmenopausal patients, and many studies set criteria that specifically exclude younger women. This is the topic area most in need of work and priority. Similarly, little research focuses on the specific risk factors for early onset breast cancer. These are likely distinct from the risk factors associated with postmenopausal breast cancer yet they are rarely separately examined. Conclusions: Compared to older women, young women generally face more aggressive cancers, lower survival rates, and unique psychosocial concerns. Breast cancer in young women is an area in need of additional work and clarification in order to increase their quantity and quality of life.

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