The impact of a BRCA support-information group on the choice for a preventive mastectomy is limited

K.M. Landsbergen1, H.J. van der Looij1, D. Rozendal1, H.G. Brunner1, J.B. Prins2,
N. Hoogerbrugge1
Department of Human Genetics1 and Department of Medical Psychology2, Hereditary Cancer Clinic, Radboud University Nijmegen Medical Centre

Introduction: Important aims of a BRCA support group are assimilation of being a BRCA1/2 carrier, and professional guidance in choosing prophylactic mastectomy or breast cancer surveillance.

Aim: To determine whether attending a BRCA group influences the choice for surveillance or prophylactic mastectomy.

Patients and methods: 196 BRCA1/2 mutation carriers were included of who 89 participated in a BRCA group. Preference for prophylactic mastectomy was registered after the mutation carriership was revealed, thus before first attendance of the group.

Results: Characteristics of patients, who did or did not participate in a BRCA group, did not show any difference in demographic variables, age at breast cancer diagnosis, menopausal status or family history of cancer. The preference for preventive mastectomy or surveillance was not significantly different in participators and non participators, being 31/89 (35%) and 27/107 (25%) respectively (p=0.13).

After a median observation period of 2 years (range 1-9 years) the percentage of women actually performing a preventive mastectomy was significantly higher in participators than in non-participators of a BRCA group, 45% and 29% respectively (p=0.02). However, in the group with a prior preference for mastectomy who did and did not participate in a BRCA group, prophylactic mastectomy was performed in 90% and 55%, respectively (p=0.003), in the group with prior preference for surveillance these percentages were 19% and 20% respectively (p=0.09).

Conclusion: The impact of a BRCA support group on the choice for prophylactic mastectomy is limited, and is determined by the woman's preference prior to the establishment of a BRCA mutation.