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Effects of stigmas and myths cannot be overstated. A global survey on perspectives about
Nearly half of surveyed cancer determined that myths and stigma present significant challenges to cancer control,
MBC patients report have a silencing effect, and affect individuals’ behavior in seeking out support and making
a sense of stigma, of treatment and quality of life decisions [113] . According to researchers, key aspects of stigma are
feeling like outcasts secrecy, myths and misinformation, social rejection and isolation, and shame, self-blame and
or feeling isolated, low self-esteem [114] . These key elements are hallmarks of the MBC experience, within the breast
especially within the cancer community and in the community at large. “When misfortune strikes, it is a natural
larger social context human tendency to search for a reason,” wrote psycho-oncologist Jimmie Holland. “The ready
of the breast cancer
community. explanation is often ‘he must have brought it on himself.’ By blaming the victim, we get a false
sense of security that we can prevent events that are beyond our control” [115] .
How can we, as an alliance of individual members, begin to challenge the myths and stigmas
that cause fear in the breast cancer community and the larger public, resulting in financial,
social, and emotional distress for people living with MBC? How do we reduce the isolation that
many people with MBC feel? How can the Alliance focus its resources on educating different
groups about MBC and the importance of helping those with MBC to live longer and better?”
To address the lack of understanding of MBC, the Alliance will draw on our collective
experience, resources, and spheres of influence. The following principles will guide our future
efforts to build understanding across all spheres of MBC, including scientific and quality of life
research, epidemiology, and information and support services:
• Our actions must be led by advocates and informed by research and evaluation if we are
to change the landscape for people living with MBC.
• The Alliance will not duplicate efforts of individual member organizations of the Alliance.
• We value learning from other cancers and other diseases, so we can apply best
practices to our work.
• People living with MBC come from diverse backgrounds; differing cultural values and
belief systems must inform the provision of information and support services, as well as
public education about the disease, treatments, and quality of life.
• Collaboration is essential. Advocate organizations and industry members of the Alliance
will work together to learn from each other’s experience and research.
• As our work is resource intensive and time consuming, we will be thoughtful in how we
commit our assets to future campaigns.
• Developing an evaluation framework that goes beyond counting pamphlets, banners,
press releases, radio announcements, and Facebook posts is an exciting challenge for
the Alliance and one that will be a major part of our planning for 2015–2016.
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