[Prophylactic mastectomy in women at high risk for breast and ovarian cancer: qualitative analysis of the decision making process and long-term satisfaction of two women carrying a BRCA1-mutation].

PURPOSE

Bilateral prophylactic mastectomy and oophorectomy are currently the most effective prevention options for female carriers of the BRCA1 or BRCA2 gene. However, especially the mastectomy procedure is very invasive and is chosen rarely among high risk women in Germany. Little is known about how women cope with this surgery and their long-term satisfaction.

METHODS

Face-to-face interviews were conducted with two BRCA1 mutation carriers, who had undergone prophylactic mastectomy in their twenties 9 and 16 years ago. The process of decision making and long-term satisfaction were analysed using Mayring's qualitative content analysis.

RESULTS

Both high risk women had a significant family history of breast and ovarian cancer. They were repeatedly confronted with uncontrollable courses of disease in their relatives who died of breast cancer between the age of 20 and 30 and left small children behind. Although both women experienced different decision making and peri- and post-operative complications, both were satisfied with the decision for prophylactic surgery and showed no regret.

DISCUSSION

Deciding to obtain genetic testing pushed women towards further decision making concerning prophylactic surgery in case they carry a mutation. Information about carrier status reduced uncertainty even if the result was adverse. Both high risk women experienced a decrease in cancer related anxiety which may have heightened tolerance for quality of life related impairments. Implications for counseling are described.