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Chapter 6: Public Education:

Building Awareness of MBC

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