Experiences with risk-reducing mastectomy in Norwegian BRCA1/2 carriers without prior breast cancer

BRCA1 and BRCA2 carriers without prior breast cancer have the option to undergo risk-reducing mastectomy (RRM). The aim of this study was to investigate factors associated with their decision, experiences with the process, and satisfaction with the procedure.

We distributed a cross-sectional survey to 425 women aged 25-70 with a pathogenic BRCA1/2 variant. The survey collected data on sociodemographic factors, family cancer history, reasons for choosing RRM or not, experiences with the decision-making process, support from healthcare, and surgery satisfaction. Multivariate logistic regression analysis identified factors associated with the decision to undergo RRM and satisfaction with having undergone surgery.

Of the 272 respondents, 190 (69.9%) had undergone RRM. Having children and being a BRCA1 carrier were both associated with higher probability of choosing RRM, with an OR of 3.5 (p = 0.005 and p < 0.001 respectively). Among those who had undergone RRM, 78.9% (150/190) were satisfied with their decision and would choose the same procedure again. Feeling satisfied with support from the health care system gave an OR of 5.5 for being satisfied with having undergone RRM (p < 0.01). Those who found the decision difficult had lower odds of being satisfied (OR 0.2, p = 0.02).

Being a BRCA1 carrier and having children were strongly associated with choosing RRM. Most participants felt relieved after RRM, were satisfied with their decision, and would choose the surgery again. Support from healthcare providers during decision-making was linked to higher satisfaction with having undergone surgery while those who struggled with the decision reported lower satisfaction.