Survivor, Previvor, Preventer: How Narrative Shapes Experiences and Decisions Around Cancer and Mastectomy

Abstract: A mastectomy, simply put, is the surgical removal of breast tissue. Reasons for the procedure might include the following: invasive disease, disease predisposition, disease prevention, or gender affirmation. Questions emerge regarding how patients perceive themselves, their intimates and others. Narratives around mastectomy can guide the initial surgical decision and the psychosocial support needed before, during, and after the surgery. In this presentation, four distinct narratives will be presented to broaden the discourse to create better-informed and more supportive environments for those choosing mastectomies regardless of reason. First, a physician who opted for mastectomy due to a high-risk condition will present. Next, a bioethicist with a family history of BRCA2 who does not carry the mutation but has 2 high risk conditions will present. The third panelist, a spouse, bioethicist and cancer survivor, will discuss how his personal and professional vantage points intersected. The final presentation will come from a science journalist/filmmaker with a BRCA mutation, who documented her struggles with prophylactic mastectomy in a documentary only to discover she had breast cancer while nursing her daughter. At the time, she was planning for the surgery, which ended up being a double mastectomy following cancer rather than to prevent it. Each will share how they have grappled with issues of identity, knowing where they fit in, what support they received or need(ed), and how they struggle(ed) with feelings of guilt and relief. The perspectives of a survivor, previvor and preventer will demonstrate narrative’s importance in supporting informed decision making.

Keywords: mastectomy, narrative, identity