Making the right choice. How unaffected women carrying BRCA1/BRCA2 germline mutations decide for prophylactic mastectomy to reduce cancer risk

Schweighoffer, R and Katapodi, M and Aceti, M and Pedrazzani, Carla Ambrogina and Burki, N and Chappuis, P and Graffeo-Galbiati, R and Monnerat, C and Rabaglio, M and Pagani, Olivia and Membrez, Véronique and Unger, Sheila and Caiata Zufferey, Maria (2022) Making the right choice. How unaffected women carrying BRCA1/BRCA2 germline mutations decide for prophylactic mastectomy to reduce cancer risk. In: European Human Genetics Conference, 11-14.6.2022, Wien.

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Abstract

Background. For women at high risk of breast cancer, prophylactic surgery is an alternative to intensive surveillance to preserve their health. Risk-reducing mastectomy (RRM) strongly reduces the risk of breast cancer but may generate health and psychosocial issues. The choice between intensive surveillance and RRM appears therefore challenging and highly personal. Methods. This grounded theory study explores the decision-making process for RRM of unaffected women carrying pathogenic BRCA1/BRCA2 germline mutations: data is acquired from two Swiss datasets of biographical qualitative interviews performed in these women. The first data collection was conducted between 2011 and 2014 and includes narratives of 32 women; the second set of data was collected between 2019 and 2021 and includes narratives of 14 women. Results. The data shows that RRM decision is influenced by several factors, including women’s self-identity and moral values, prevention norms, risk perception based on lay theories, stage in the life course, and experiences with intensive surveillance. All these factors interact with each other, sometimes creating contradictions that make the decision difficult to make. To navigate in this context of uncertainty, women progressively build their RRM decision by engaging in a three-steps process: thinking RRM as an obligation, de-dramatizing RRM and building consensus around it. Conclusion. We conclude that the decision to undergo RRM is more the result of a complex interaction between the woman and her context than an intimate and private choice. Health professionals should be aware of this decision-making process and help women to govern it.

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