Purpose: Lumpectomy plus radiation (BCS) is the recommended treatment for most women with early stage breast cancer. Given a choice, many women still choose mastectomy. Studies have shown higher rates of mastectomy associated with geography, economics, race, and physician preference. Recent studies demonstrate many patients reporting greater involvement in the decision making process will choose mastectomy. We aimed to elicit patient perspective for those choosing mastectomy over BCS, including their knowledge, values, and underlying motivations.

Methods: We conducted a prospective cohort study of early stage breast cancer patients radiographically and pathologically eligible for mastectomy or BCS (n = 115). Study participants: • viewed a video-based decision aid (DA) about surgical treatment options • completed a questionnaire • proceeded to a consultation appointment with their surgeon • completed a follow-up questionnaire. A focus group was conducted among a subset of patients (n=5) to further query values related to the choice of mastectomy.

Results: Of 115 patients, 41 (36%) chose mastectomy. Most respondents understood key facts associated with the decision including: BCS and mastectomy offer equivalent survival benefits (96%) and similar recurrence rates (93%). Two values (“remove breast for peace of mind” and “keep breast”) discriminated between patients choosing mastectomy and BCS. Focus group feedback suggests that knowing a person who experienced a sub-optimal outcome after BCS influenced their decision for mastectomy. Aversion to possible subsequent procedures (including additional surgeries and radiation) and wanting to further minimize recurrence risk were also motivators for choosing mastectomy.

Conclusions: Women in this study were provided with current information about risks and benefits of two surgical options. These women understood key facts associated with their surgical decision, yet ~ 1/3 still chose the more invasive procedure. For some, the influence of personal experience and values are driving factors in their decision for mastectomy. Others chose mastectomy because they felt they are less likely to require subsequent procedures. Physicians should be aware that while conventional wisdom may view BCS as the preferred treatment, fully informed women may reasonably opt for mastectomy.