What Do Breast Cancer Previvors Tell Us About Their Stories? To Know or Not to Know?

Abstract

This study aimed to explore the (1) experiences of breast cancer previvor women during genetic testing; (2) perceptions of the impact of genetic testing on their personal, social, family, and professional lives; and (3) views on breast cancer prevention and follow-up processes. This study focused on the risk of breast cancer in persons with BRCA mutations. Data were collected through individual in-depth semistructured interviews. The data were analyzed using the MAXQDA program based on the method suggested by Graneheim and Lundman. This study was conducted in Istanbul, Turkey, and included 17 participants. Five themes emerged from the data analysis-Acquaintance with BRCA, Living with BRCA, Managing the Legacy, Maternalism, and We Are Here, including a total of 12 categories. The previvors had negative experiences during genetic testing, mainly owing to a lack of information, stigma, and women's roles in society. A structured and individualized process for genetic counseling was identified as the main requirement. National and international policies on breast cancer previvors should be developed to prevent breast cancer and reduce mortality. Adopting a multidisciplinary approach during genetic counseling will favorably contribute to previvors' medical and psychosocial well-being. Follow-up programs before and after genetic testing should be created. Society's cultural and genetic literacy levels should be evaluated, and activities should be planned to raise social awareness.