Clinical follow-up after bilateral risk reducing ('prophylactic') mastectomy: Mental health and body image outcomes

Background: In Manchester, approximately 120 women at greater than or equal to 1:4 lifetime risk of breast cancer have considered preventative surgery since 1992. Women treated within the Manchester protocol receive two genet ic counselling sessions, a psychological assessment and a surgical consulta tion pre-operatively and annual follow-up postoperatively. The vast majorit y of women have breast reconstruction. Methods: Since 1996, mental health and body image have been assessed in wom en attending annual follow-up using self-report questionnaires: the 28-item General Health Questionnaire (GHQ) and 10-item Body Image Scale (BIS). Wom en with high scores are assessed by clinical interview together with a prop ortion who have no significant problems. Results: Between 1995 and 1999, 76 women completed surgery. Ten were awaiti ng post-operative review and 60 (91%) attended For follow-up of whom 45 (75 %) were interviewed. Questionnaire data were available for 52 (79%) women, mean age 40.8 years (range 27-58). Six women were gene mutation carriers an d of these three had had breast cancer. One additional patient was affected but had not been genetically tested. Eight (17%) of 47 women with assessme nts in the first post-operative year scored in the 'caseness' range on the GHQ: the mean GHQ score was 3.8 (S.D. 6.7), range 0-25. Results were compar able with those for women attending the Family History Clinic for risk asse ssment. The mean score on the BIS was 5.1 (S.D. 5.5), range 0-25, comparabl e with scores for women undergoing conservative surgery for breast cancer. Twenty-one percent of women reported no negative change in body image follo wing surgery (i.e. zero questionnaire summary scores) and the majority of c hanges reported were of minor degree (item scores 0 or 1). The most frequen tly reported changes were in sexual attractiveness (55%), Feeling less phys ically attractive (53%) and self-consciousness about appearance (53%): a th ird of women felt less feminine to a minimal degree. These results appeared stable over time. A minority of women had more serious psychological or bo dy image concerns, usually in relation to surgical complications: they rece ived further psychiatric intervention. Conclusions For the majority of women there is no evidence of significant m ental health or body image problems in the first 3 years following Bilatera l Prophylactic Mastectomy (BPM), but women who have complications warrant a dditional psychological help. Careful pre-operative preparation and long-te rm monitoring are advocated in this new field of cancer prevention. Copyrig ht (C) 2000 John Wiley & Sons, Ltd.