The experience of women carriers of BRCA mutations following risk-reducing surgery: A cultural perspective

Abstract

In this qualitative study, we examine the experience of 13 Jewish Israeli women carriers of BRCA mutations following risk-reducing surgery. Thematic analysis of in-depth, semi-structured interview texts yielded three themes: (a) dialectic of vulnerability and control, (b) presentation of self as a "normal" woman, and (c) genetic chain of negative life events and guilt. Aspects of Israeli culture impacting participants' experiences are: personal and collective responsibility, the shift toward consumerism, and pro-natal ideology. The findings may be useful for health practitioners working with other nationalities with similar cultural characteristics and to prompt practitioners to explore their own and their patients' perceptions regarding women's risk-reducing surgery and genetic illnesses.

BRCA and Motherhood: A Matter of Time and Timing

“…Why does this participant enter a state of indecision despite her clearly expressed opinion that she and her husband did not want more children? It is possible that the biological end to the possibility of creating new life intensifies the mortality salience engendered by the ticking time bomb of BRCA (Dagan & Goldblatt, 2009; Mahat-Shamir & Possick, 2017; Rubin et al, 2014), thus reactivating the desire to reproduce. Women explained that it was the finality of infertility, the abrupt shift from the end of subjective fertility time to the termination of objective fertility time, as a result of oophorectomy that engendered a great deal of difficulty and/or ambivalence.…”

“…After sorting all transcripts into agreed topics, the topics were sorted into patterns based on the researchers’ frame of reference and interpretations of the topics. Three themes were identified by synthesizing and conceptualizing the main topics and patterns: (a) dialectic of vulnerability and control, (b) the presentation of self as a “normal” woman, and (c) a genetic chain of negative life events and guilt (Mahat-Shamir & Possick, 2017).…”

“…A significant and consistent finding in qualitative research studies of women’s experience of cancer is the need and motivation women expressed “to live” to survive as mothers and take care of their children. Women fear that their children might become orphans or that they will have to live with the anxiety that their mother might die (Arès, Lebel, & Bielajew, 2014; Dean, 2016; Dorgan et al, 2013; Hamilton, 2012; Kirkman et al, 2014; Mahat-Shamir & Possick, 2017).…”

“…Women without children expressed urgency about giving birth. Another worry was the fear of passing the BRCA gene to the next generation (Hamilton, 2012; Kirkman et al, 2014; Mahat-Shamir & Possick, 2017).…”

Cost–utility analysis of risk-reducing strategies to prevent breast and ovarian cancer in BRCA-mutation carriers in Switzerland

“…Cancer causes physical (surgery, chemotherapy, side effects), mental (guilt towards offspring), emotional (frustration, sadness, fear) and social (disclosure stress, reaction of family members, conflicts, isolation, work-related concerns) distress for concerned women and their families affecting the life of everyone in the family, especially in emotional terms [ 79 ]. The decision whether and at what age a risk-reducing strategy is initiated requires rational decision-making based on individual preferences, copying style, anxiety level, family circumstances and cultural identity.…”