High satisfaction rate ten years after bilateral prophylactic mastectomy – a longitudinal study E. WASTESON, medical psychologist, phd, Division of Psychology, Department of Social Sciences, Mid Sweden University, Campus Östersund, Östersund, Sweden, and Department of Cancer Research and Molecular Medicine, Faculty of Medicine, Norwegian university of Science and Technology (NTNU), Trondheim, Norway, K. SANDELIN, md, phd, Department Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Y. BRANDBERG, medical psychologist, phd, Department of Oncology and Pathology, Karolinska Institutet, Stockholm, M. WICKMAN, md, phd, Molecular Medicine and Surgery, Karolinska Institutet, Stockholm,& B. ARVER, md, phd, Department of Oncology and Pathology, Karolinska Institutet, Stockholm, Sweden WASTESON E., SANDELIN K., BRANDBERG Y., WICKMAN M. & ARVER B. (2011) European Journal of Cancer Care 20, 508–513 High satisfaction rate ten years after bilateral prophylactic mastectomy – a longitudinal study Women from families with an increased risk for breast/ovarian cancer have undergone bilateral prophylactic mastectomy (BPM) since the early 1990s at the Karolinska University Hospital in Sweden. Perceptions of BPM as reported by the first women who underwent the procedure have previously been evaluated on a short-term basis (1–3 years). The present study aims to evaluate the long-term (10 years) physical and psychological consequences of BPM in the same cohort of women. Some of the very first women to undergo BPM participated in the present interview study (n = 13). The semi-structured interviews focused on the women’s long-term experiences related to BPM and immediate breast reconstruction. Overall, the women were satisfied with their decision to undergo BPM and perceived a negligible remaining risk of getting breast cancer. For most women, the operation had not resulted in changes in family life or lifestyle (n = 8), although some described that the relationship with their spouse was affected (8/13), either in a negative (n = 5) or positive (n = 3) way. The cosmetic results were mainly positive (n = 10). Recurrent counselling and support during the whole process of decision, treatment and follow up is recommended. Keywords: breast cancer, ovarian cancer, bilateral prophylactic mastectomy, hereditary risk, patient satisfaction. INTRODUCTION Women from families in which several members have been diagnosed with breast cancer have a substantial life- time risk of contracting the disease. In carriers of the BRCA1&2 mutations this life-time risk amounts to 60–80%. (Lostumbo et al. 2004). Bilateral prophylactic mastectomy (BPM) combined with immediate breast reconstruction (IBR) is an option for prevention in women at hereditary risk of breast cancer, especially those with a proven mutation in one of the breast cancer genes, BRCA1 or BRCA2 (Rebbeck et al. 2004; Metcalfe et al. 2005; Spear et al. 2005). In these women, prophylactic mastec- tomy has been shown to reduce the incidence of breast cancer by 90% (Hartmann et al. 1999, 2001; Meijers- Heijboer et al. 2001; Rebbeck et al. 2004). Some studies reporting on the psychosocial conse- quences of BPM with IBR have been published (Frost et al. Correspondence address: Kerstin Sandelin, Department of Breast and Endo- crine Surgery, Karolinska University Hospital, S17176 Stockholm, Sweden (e-mail: kerstin.sandelin@ki.se). Accepted 3 May 2010 DOI: 10.1111/j.1365-2354.2010.01204.x European Journal of Cancer Care, 2011, 20, 508–513 Original article © 2010 Blackwell Publishing Ltd