Understanding the experience of prophylactic bilateral mastectomy: a qualitative study of ten women

Prophylactic bilateral mastectomy represents a new and controversial cancer prevention strategy for women at high-risk of familial breast cancer, the psychosocial implications of which are yet to be fully explored. A qualitative methodology was therefore adopted to provide a discovery-orientated study of the perspectives of ten women who had undergone prophylactic mastectomy and the views of eight of their partners. Each participant was interviewed with the aim of exploring the personal experiences of surgery, factors associated with psychological adjustment and the impact on the family. Data were transcribed and systematically analysed using Grounded Theory. Themes emerging from participants' accounts formed seven significant categories that represented women's key experiences: (i) deciding; (ii) telling; (iii) experiencing surgery and recovering; (iv) maintaining womanliness; (v) processing the loss; and (vi) moving on. The importance of the social context in women's experience and difficulties of isolation/eliciting support were also highlighted: (vii) isolation and being supported. A core category of 'Suffering and countering multiple loss' considered central to women's experience, integrated the seven significant categories and provided further conceptualisation of women's experience. Implications for clinical practice are highlighted.