Being a carrier and living with the BRCA gene mutation: an interpretive phenomenological study of the experiences of women who elect risk-reducing bilateral mastectomy, their husband's and family

Women who inherit the BRCA1/2 gene have up to an 85% lifetime chance of developing breast cancer and a 63% chance of developing ovarian Cancer. Since the publication and update of the UK Nice National Guidelines (2015) for women with a strong family history and Angelina Jolie, the famous American actress declared her status and her surgery, many more women are seeking testing in order to undergo bilateral risk-reducing mastectomy and oophorectomy. Very little is known about the longer-term effect on the woman her partner and her relatives following diagnosis and bilateral mastectomy from a qualitative research perspective. Aim - The aim of this study, therefore, was to explore, interpret and develop an understanding of the experiences of women and their relatives living with the BRCA gene who elect to have bilateral risk-reducing mastectomy in an attempt to improve clinical practice by providing a new horizon of understanding. Methods - An interpretive hermeneutic phenomenological study was conducted guided by the philosophy of Gadamer (2004) with its emphasis on a fused horizon of understanding with eight BRCA positive women, five of their husbands and five of their relatives. This study is a prospective study that took place in a large teaching hospital in Wales. Findings - This study provides a new fused horizon of understanding of what it means to be a BRCA Positive woman and a relative living with the BRCA gene who elect to undergo bilateral mastectomy as a risk-reducing modality. A hermeneutic text of interpretation exposed three main horizons (Gadamer, 2004). ‘The price of survival’, which includes the journey of the overall desire to survive, not just prevent cancer. ‘The altered child’s trajectory’ which involves the transference of the fear of cancer onto (for) children and future generations and ‘disembodied, a separation from self’ which includes the effects of surgery on sexuality, femininity and identity. These horizons unite the experiences of the women and her relatives resulting in a new fused horizon of understanding, ‘being disembodied’. These findings add knowledge and understanding for clinicians, researchers and policy makers working in the field of breast care with many implications for practice