What are the experiences of BRCA1/2 (breast cancer susceptibility gene) women, their partners and relatives following diagnosis and up to 18 months post bilateral risk-reducing mastectomy (RRM)?

This report is a summary to date of my PhD project. A Qualitative prospective longitudinal phenomenological study was conducted with 8 women carrying the BRCA1/2 gene who decided to undergo bilateral risk reducing mastectomy. The study has been conducted in a main breast unit in Wales and participants referred from the All Wales Cancer Genetics Service were approached by the research nurse to take part. In depth interviews were conducted pre surgery and then at 6, 12 and 18 months post surgery. To date, all 8 women have been interviewed pre surgery.6 women interviewed at 6 months post surgery, 6 at 12 months and 2 at 18 months. In terms of the partners, all 5 have been interviewed pre-surgery and at 12 months post surgery. The proband interviews will continue until the remaining 6 have been completed at 18 months. The 5 relatives were all interviewed pre surgery. Analysis using an interpretive hermeneutic approach has and continues to be conducted and the women’s narratives over time will be documented. The pre operative interviews yielded constant fear of getting breast cancer or fear of their children seeing them go through breast cancer treatment and indeed the fear of dying. There was an over whelming sense of a duty to do something pro active and all women felt they had no choice in that the risk of getting breast cancer was too high a risk to take. The partners were all worried how the surgery would affect confidence and well being for their loved one but just wanted the women to survive and all but 1 partner was fully supportive and felt part of the decision process. There was an overwhelming sense of guilt felt by the relatives especially of the fathers who had passed on the gene to their daughters. This guilt was also felt by the relatives who tested negative for the gene. Post surgery there was a definite drop or resolution in the level of fear experienced by all of the women. There was also a great sense of relief seen. However, only 4 of the 7 women were happy with the cosmetic result of their reconstructions and 1 woman regretted having the surgery. The 1 woman who opted to preserve her nipple areolar complex was very pleased with her reconstruction. Only 1 of the women did not have reconstruction at the time of the risk reducing surgery but intends to have this at a later date. Over time, the discontentment with the cosmetic result does not appear to improve for the 3 women. For those women who had always thought of having the genetic test and intended to have the surgery, the post operative recovery was easier and they are coping better. For those women who had become involved in the process because another member of the family had instigated the process, these women struggled most post surgery and were the most discontented. Where the marriage was strong pre surgery, post surgery this continued, but where there was problems pre surgery, these persisted over the time interviewed.3 of the women felt they had a better body than before the surgery but 4 of the women felt disembodied and unfeminine. All of the participants expressed the need for support, information and counseling especially for the intimacy and body image issues. The analysis of this data continues.