‘Living With The BRCA Gene.’ What Are The Experiences Of BRCA (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. Participants were referred from the All Wales Cancer Genetics Service and husbands h=5 and relatives r=5 took part in the study which was conducted in a main breast unit in Wales. To participate, the women were approached by the research nurse prior to surgery following successful ethical approval. Husbands and relatives were approached by the women. In depth interviews were conducted pre surgery and then at 6, 12 and a sample of the women at 18 months. The 5 relatives were all interviewed pre surgery. The husbands once pre-surgery and once post-surgery.

Analysis was done using an interpretive hermeneutic approach underpinned by Gadamerian philosophy. The pre-operative interviews yielded very similar findings across the three group’s .These were constant fear of getting breast cancer, fear of going through breast cancer treatment, fear of body image problems and a fear of death thus leaving their children. There was an over whelming sense of a duty to do something pro active and all women felt they had no choice other than removing the breasts because the risk of getting breast cancer was too high. In addition to losing their wives, the partners were all worried how the surgery would affect confidence and Quality of life especially their image and were concerned about their children’s risk especially their daughters. The majority of husbands were fully supportive of the surgery and felt part of the decision process but the results of the surgery was a shock initially post-operative. One husband could not help his wife or be part of the decision as he felt he was not qualified. There was an overwhelming sense of guilt and sadness 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 resolution in the level of fear experienced by all of the women and the family but this fear was displaced towards their children. There was also a great sense of relief seen. However, only 4 of the 8 women were happy with the cosmetic result of their reconstructions and 1 woman regretted having the surgery.

Preserving the nipple areolar complex led to the most body satisfaction and 3 of the women felt they had a better body image than before the surgery but 4 of the women felt disembodied and unfeminine. Over time, the discontentment with the cosmetic result did not appear to improve. For those women who had always intended on having the genetic test and the surgery, the post-operative recovery was easier and they coped better. For those women who had entered into the process because of other family members, these women struggled the 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.

All of the participants expressed the need for support, information and counseling especially for the intimacy and body image issues. Three main horizons resulted from the research. Maximizing survival, Surgery and beyond and Life back to normal.