Mean br Variable br Number of br women br Sexual
Sexual activity Pleasure
Pleasure: higher scores indicate more pleasure [range 0e18].
Discomfort: higher scores indicate more discomfort [range 0e6].
SF-36 [range 0e100, higher scores indicate better well-being]: a Physical health.
b Overall representation of both physical and psychic/mental health. Both scales are bipolar. A median of Vitality and General Health implies absence of fatigue and no negative values of health in general, respectively.
c Psychic/mental health, where Mental Health is a bipolar scale, mid-value implies absence of anxious/depressive symptoms or psychosocial impairment, 100 indicates best possible well-being.
The EORTC QLQ-BRR26 has no published comparable data yet. The long-term results showed an expected group difference in ‘Disease treatment/surgery related symptoms’, as the primary cancer surgery often involves axillary dissection of different de-grees . This subscale involves questions about numbness/ tingling in the arm/shoulder and fullness under the arm. Implant rupture/symptomatic leakage and BYL 719 induced fibrosis (causing capsular contracture/deformity/pain) can occur long time after radiation . Satisfaction with the reconstructed nipple was rated moderately clinically higher by women without cancer, possible also due to side-effects from radiotherapy in the other group [28,29].
The sexuality-subscale in EORTC-BRR26 involves questions about body feeling less whole, loss of sexual attractiveness, at ease in intimate situations, role of breast as part of sexuality, and loss of pleasurable sensations to the breast. Women without cancer re-ported lower levels of problems on the sexuality-subscale than women with cancer. This result was mirrored in the SAQ-assessment, where women ‘with cancer reported a higher level of 'Discomfort’ than the other group. As women in both groups have gone through bilateral surgery, the surgical impact on sensation ought to cancel out each other in the comparison, and might not explain the significant difference between the groups. In addition, radiotherapy has not been shown to affect the recovery of sensation postmastectomy [30,31]. The higher level of sexual problems in the breast cancer group could be due to late effects of anti-cancer treatment and recommendations of avoiding hormone replace-ment therapy after bilateral prophylactic salpingo-oophorectomy,
which affects the vaginal mucosa and causes vaginal dryness [32e34]. More than 50% in both groups had undergone prophy-lactic salpingo-oophorectomy, where women without breast can-cer could use hormonal replacement therapy. This could explain the higher levels of sexual discomfort associated with intercourse among the cancer patients.
The BIS results showed several problems appearing to persist many years post-RRM. A number of reconstructed women under-went several revision surgeries including replacement of implants. Some women also received autologous reconstruction after implant failure during the follow-up time. Approximately 70% of the women with cancer and 45e50% of the women without cancer reported sexual/physical attractiveness problems at the long-term follow-up. In addition, large proportions of women in both groups were dissatisfied with their scars at the long-term assess-ment, 62% of the women with cancer and 49% of the women without cancer. Other body image problems, such as feeling less feminine after the surgery, difficulties with seeing oneself naked, or body feeling less whole, were also relatively persistent. Problems with body image post-RRM have previously been reported [10e12,35,36]. However, this is the first study contributing with long-term prospective results, clinically significant for preoperative consultations. The items in the BIS questionnaire refer to ‘after the surgery’, thus exon is likely that the women attribute these perceptions to RRM.
The levels of HRQoL persisted from the one-year assessment to the long-term follow-up. HRQoL has been previously reported to not change from pre-RRM to one year post-RRM for women
without previous breast cancer . Similar results were obtained in our prospective two-year follow-up study of women with cancer who had complementary/contralateral RRM . Thus, going through RRM does not seem to affect HRQoL. The decrease in ‘General health’ over time might be explained by aging.
The strengths of this study includes the prospective design with baseline data previously collected one year after surgery, the robust response rates long time post-RRM, and the use of several validated questionnaires . A limitation is the lack of clinical/demographic information about the non-responders. In addition, the number of responders at the one-year assessment was 164 women. Thus, only 107 women responded at both assessments. In order to make it possible for the reader to evaluate the correspondence between data from those who have responded only at one time point and from those who responded at both assessments, we have added data in the tables and figures for the questionnaires from all women responding at each time of assessment. The results should be interpreted with caution due to the small sample size, which is mirrored in the size of the confidence intervals.