99 Chapter 6: Public Education: Building Awareness of MBC Katherine Crawford-Gray1 1 Metastatic Breast Cancer Alliance Abstract Breast cancer campaigns have heightened public awareness yet have propagated unexpected misinformation. Methods: We informally explored various aspects of misinformation around MBC. Results: The most persistent myths relate to the breast cancer “survivor,” which masks the reality that a proportion of women who have had early breast cancer will eventually develop metastatic disease. Further, the promotion of the “survivor” can stigmatize patients whose breast cancer progresses. The majority of adults in a recent survey reported they know little to nothing about MBC, that breast cancer in the advanced stages is curable, and that breast cancer progresses because patients did not take the right medicines or preventative measures. Conclusions: There is an opportunity for the Alliance to help ensure the facts about MBC are brought into the public awareness; to do so, a broad communication strategy should be informed by MBC patient advocates and developed drawing on Alliance member’s collective experience, resources and spheres of influence. Discussion The Alliance aims to build an understanding of MBC, and how it differs from early stage breast cancer, among those diagnosed, their families, HCPs, researchers, and health policy experts. The past 30 years of breast cancer campaigns have been successful in shining the light on the disease, the importance of early detection, and the methods of screening. And yet with this heightened public awareness of “survivorship” has come unexpected misinformation. A 2014 Pfizer-sponsored study of more than 2000 adults in the general public found that 72% believed breast cancer in the advanced stages is curable if diagnosed early; 50% believe that breast cancer progresses because patients did not take the right medicine or preventative measures, and more than 60% said they knew little to nothing about MBC[111] . The focus on fighting and beating breast cancer has led to the creation and dominance of the breast cancer “survivor”—an identity central to various public fundraising events, celebrity endorsements, and calls to action. This “survivor” identity masks the reality that 20-30% of women who have had early breast cancer will eventually develop metastatic disease[112] . Campaigns with a focus on “the cure” distract from a research agenda to increase the quality and quantity of life for MBC patients. Drives based on “beating cancer” and survivorship also deny the fact that women who have early breast cancer can develop metastatic disease. Further, the promotion of the survivor stigmatizes patients whose breast cancer progresses; they are seen or may even see themselves at fault for the cancer’s progression, and ultimately failing to win the battle for survival. “We did nothing wrong. Our medical team did nothing wrong. Metastatic breast cancer happens...at any time...regardless of your age, whether you did chemo[therapy], radiation, had a mastectomy, had a bilateral mastectomy, ate well, took vitamins, exercised regularly, prayed, had positive thoughts, had negative thoughts, got regular mammograms, did self exams religiously, had a tiny stage 1 primary tumor, or a stage 0 primary tumor, or a stage 3 primary tumor, or never even had primary breast cancer. It doesn’t matter.” — MBCN website www.mbcn.org