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Decision Making Regarding Prophylactic Mastectomy: Stability of Preferences and the Impact of Anticipated Feelings of Regret

Sandra van Dijk, Mariëlle S. van Roosmalen, Wilma Otten, Peep F.M. Stalmeier

From the Department of Medical Decision Making and Department of Medical Psychology, Leiden University Medical Center, Leiden; Department of Radiation Oncology and Department of Epidemiology, Biostatics, and Health Technology Assessment, Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands

Corresponding author: Sandra van Dijk, PhD, Department of Medical Psychology, Leiden University Medical Center, Pieter de la Court Building, Postbox 9555, 2300 RB Leiden, the Netherlands; e-mail: dijk{at}lumc.nl

Purpose: Women who test positive for a BRCA1/2 mutation face difficult choices to manage their breast cancer risk; one of these choices is whether to opt for prophylactic mastectomy. Few data are available about this decision-making process. The current study provides data regarding the stability of risk-management preferences over time and the factors that are associated with these preferences.

Patients and Methods: We analyzed data from 338 women who opted for breast cancer antigen (BRCA) testing. First, we prospectively assessed preferences of 80 BRCA mutation carriers at five different points in time ranging from 1 week after blood sampling up to 9 months after BRCA-test disclosure. Second, we applied univariate and multivariate regression analyses to examine which medical, sociodemographic, and psychological factors are related to a preference for prophylactic mastectomy.

Results: Ninety percent of the women already indicated a preference regarding risk management at baseline. Moreover, most women had stable preferences over time. Furthermore, anticipated feelings of regret in case of a hypothetical breast cancer diagnosis in the near future were strongly related to risk-management preference (odds ratio = 8.93; P < .0001).

Conclusion: Women seem to decide at a relatively early stage about their risk-management preferences. Many of them may be sensitive to the possibility of regret in case of a bad outcome. We discuss whether possible regret in the future is a rational reason for opting for prophylactic mastectomy, or whether it signifies an emotional coping process or strategy in which the future costs are no longer fully considered.

Supported by Dutch Cancer Society Grant No. 98-1585.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.