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

Abstract

Background: In Manchester, approximately 120 women at ≥1: 4 lifetime risk of breast cancer have considered preventative surgery since 1992. Women treated within the Manchester protocol receive two genetic counselling sessions, a psychological assessment and a surgical consultation pre‐operatively and annual follow‐up post‐operatively. The vast majority of women have breast reconstruction. Methods: Since 1996, mental health and body image have been assessed in women attending annual follow‐up using self‐report questionnaires: the 28‐item General Health Questionnaire (GHQ) and 10‐item Body Image Scale (BIS). Women with high scores are assessed by clinical interview together with a proportion who have no significant problems. Results: Between 1995 and 1999, 76 women completed surgery. Ten were awaiting 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 and of these three had had breast cancer. One additional patient was affected but had not been genetically tested. Eight (17%) of 47 women with assessments 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 comparable with those for women attending the Family History Clinic for risk assessment. The mean score on the BIS was 5.1 (S.D. 5.5), range 0–25, comparable with scores for women undergoing conservative surgery for breast cancer. Twenty‐one percent of women reported no negative change in body image following surgery (i.e. zero questionnaire summary scores) and the majority of changes reported were of minor degree (item scores 0 or 1). The most frequently reported changes were in sexual attractiveness (55%), feeling less physically attractive (53%) and self‐consciousness about appearance (53%): a third of women felt less feminine to a minimal degree. These results appeared stable over time. A minority of women had more serious psychological or body image concerns, usually in relation to surgical complications: they received further psychiatric intervention. Conclusions: For the majority of women there is no evidence of significant mental health or body image problems in the first 3 years following Bilateral Prophylactic Mastectomy (BPM), but women who have complications warrant additional psychological help. Careful pre‐operative preparation and long‐term monitoring are advocated in this new field of cancer prevention. Copyright © 2000 John Wiley & Sons, Ltd.

Psychosocial Issues in Cancer Genetics

“…This was not the case for the 64 women who declined surgery. In contrast to Hopwood et al (43), the level of sexual discomfort and degree of sexual pleasure did not change significantly over time in either of the two groups.…”

Long-term outcomes of risk-reducing surgery in unaffected women at increased familial risk of breast and/or ovarian cancer

“…Early studies found no evidence of a negative sexual impact in 79 women who opted for RRM up to 18 months post-surgery [19] and only minor deteriorations in body image in 76 women who had RRM up to three years prior [20]. In contrast, Brandberg et al [21] reported significant reductions in body image and sexual pleasure in 90 unaffected women one year after RRM, and more recent findings suggest these negative impacts continue at least up to two years following RRM [15,22].…”

Attitudes to reproductive genetic testing in women who had a positive BRCA test before having children: a qualitative analysis

“…9 Risk-reducing surgery (mastectomy, salpingo-oophorectomy) does not eliminate risk, 10 and is not without possible compromise to quality of life and psychological well-being. 11 Prenatal diagnosis (PND) followed by termination of a pregnancy (TOP) carrier fetus 12 is an alternative for known BRCA mutation carriers who want biological children not carrying the mutation. Concerns have been raised that PND for (breast) cancer predisposition represents a perversion of the original intention to protect people from the fate of an early, painful death or severe disability, and falls within the realm of deciding the 'desirability' of a particular life.…”