Long-term follow-up after risk-reducing mastectomy and immediate breast reconstruction : from a patient, partner, and 3D perspective

Sammanfattning: BACKGROUND: Breast cancer is the most common type of cancer among women. Approximately 5–10% of all breast cancer cases have an inherited pattern, and ~20% of all hereditary cases have an identifiable mutation. Through genetic counselling, individuals with an increased cancer risk can be identified and informed about appropriate management strategies. Risk-reducing mastectomy (RRM) and immediate breast reconstruction (IBR) is one of these options. AIMS AND METHODS: In a prospective study, women who underwent RRM and IBR between 1997 and 2010 at Karolinska University Hospital, Stockholm, were followed regarding the patientreported outcome measures (PROMs) satisfaction with breast reconstruction (EORTC breast reconstruction questionnaire module), body image (Body Image Scale), sexuality (Sexuality Activity Questionnaire), anxiety and depressive symptoms (Hospital Anxiety and Depression scale), and health-related quality of life (HRQoL) (Short Form-36 Health Survey). This thesis presents the results from a long-term (6–20 years) follow-up of these women regarding aforementioned PROMs (Paper I), an investigation of the partners’ perceptions (Paper II), an evaluation of the reproducibility of a three-dimensional surface imaging (3D-SI) technique (VECTRA XT 3D imaging system) (Paper III), and a comparison between the aesthetic evaluation using 3D-SI and PROMs (Paper IV). RESULTS: A total of 146 (73%) women responded to the questionnaires at the long-term assessment. Feelings regarding body image, sexuality, levels of anxiety and depressive symptoms, and HRQoL appeared to be relatively unchanged compared with their corresponding one-year postoperative evaluations regarding the psychosocial aspects. Body image problems were still prevalent at the longterm follow-up. Women without previous breast cancer reported lower levels of problems with sexuality than women with previous breast cancer (Paper I). A total of 36 (60%) couples were included. Women’s evaluations regarding long-term psychosocial outcomes appeared to have been perceived by their partners, though the partners tended to overestimate the degree of body image problems. Both women and their partners scored higher on nearly all HRQoL domains compared with the age- and sex-adjusted normative population in Sweden (Paper II). A total of 64 women (80% of those who expressed interest to participate in 3D-SI) were 3D imaged and 348 images were analysed. The method used to assess breast symmetry in 3D surface images was found to have substantial to excellent intra-observer reproducibility and moderate to substantial inter-observer reproducibility. A relative parameter, volume-shape-symmetry ( !"" ), was proposed in order to facilitate the interpretation of breast symmetry measurements. It was found to have excellent intra-observer reproducibility and substantial inter-observer reproducibility (Paper III). Results of 58 3D surface images were compared to PROMs from the corresponding 58 women regarding aspects related to satisfaction of breast reconstruction and body image. The 3D-SI measurements did not show any statistically significant associations with the women’s self-reported outcome measures (Paper IV). CONCLUSIONS: Long-term after RRM and IBR, both women and their partners reported low levels of anxiety and depressive symptoms and high levels of HRQoL. The women’s body image problems were persistent and confirmed, but overestimated, by partners. 3D-SI measurements could potentially be used to evaluate and compare aesthetic outcomes of breast reconstructions from a more objective perspective. However, these measurements did not correspond to the women’s own evaluations and should therefore not be used as a proxy for PROMs.