'Taking control of cancer': understanding women's choice for mastectomy.

Purpose: Rates of both unilateral (UM) and contralateral prophylactic mastectomy (CPM) for unilateral early-stage breast cancer (ESBC) have been increasing since 2003. Recent studies suggest that this increase may be due to women choosing UM and CPM because of fear. We conducted an in-depth qualitative study to identify those factors influencing a woman's choice for more extensive surgery.

Methods: Semi-structured interviews were conducted with breast cancer patients to examine the experiences, decision making, and choice of UM ± CPM for the treatment of ESBC. Purposive sampling identified suitable candidates for breast-conserving therapy (BCT) who underwent UM ± CPM. Interviews were guided by grounded theory methodology, and constant comparative analysis identified key concepts and themes.

Results: Data saturation was achieved after 29 interviews. 'Taking control of cancer' was the dominant theme. Fear of breast cancer was expressed at diagnosis and remained throughout decision making. Personal experiences of family or friends 'living with cancer' were the most influential source of information during the decision-making process. Fear translated into an overestimated risk of recurrence, contralateral breast cancer (CBC), and death. Despite surgeons discussing equivalent survival with BCT, UM ± CPM patients believed that by choosing UM ± CPM they would eliminate recurrence, CBC and live longer. By choosing more extensive surgery, women were actively trying to control cancer outcomes as more surgery was believed to offer greater survival.

Conclusions: Women seek UM and CPM to take control of cancer and manage their fear. It is important for surgeons to understand how personal experiences shape women's choice for UM ± CPM to facilitate informed decision making.