The psychosocial impact of bilateral prophylactic mastectomy: prospective study using questionnaires and semistructured interviews

Objectives To investigate the psychosocial impact of bilateral prophylactic mastectomy for women with increased risk of breast cancer and to identify, preoperatively, risk factors for postoperative distress. Design Prospective study using interviews and questionnaire assessments. Setting Participants' homes throughout the United Kingdom. Participants 143 women with increased risk of developing breast cancer who were offered bilateral prophylactic mastectomy and who accepted or declined the surgery; a further 11 were offered surgery but deferred making a decision. Main outcome measures Psychological and sexual morbidity. Results Psychological morbidity decreased significantly over time for the 79 women who chose to have surgery (accepters): 58% (41/71) preoperatively v 41% (29/71) 6 months postoperatively (difference in percentages 17%, 95% confidence interval 2% to 32%; P = 0.04) and 60% (39/65) preoperatively v 29% (19/65) 18 months postoperatively (31%, 15% to 47%; P < 0.001). Psychological morbidity in the 64 women who declined surgery (decliners) did not decrease significantly: 57% (31/54) at baseline v 43% (23/54) at 6 months (14%, 0% to 29%; P = 0.08) and 57% (29/52) at baseline v 41% (21/52) at 18 months (16%; - 2% to 33%; P = 0.11). Greater than normal proneness to anxiety was more common in the decliners than in the accepters: 78% (45/58) v 56% (41/73) (22%, 6% to 35%; P = 0.006). Accepters were more likely than decliners to believe it inevitable that they would develop breast cancer (32% (24/74) v 10% (6/58) (difference in percentages 22%, 9% to 35%;P = 0.003)), and decliners were more likely to believe that screening could help (92% (55/60) v 74% (55/74) (18%, 5% to 31%; P = 0.007)). Level of sexual discomfort and degree of sexual pleasure did not change significantly over time in either of the two groups. Conclusions Bilateral prophylactic mastectomy may provide psychological benefits in women with a high risk of developing breast cancer.