The impact of having relatives affected with breast cancer on psychological distress in women at increased risk for hereditary breast cancer

PURPOSE: Being at hereditary risk of breast cancer (BC) may lead to elevated levels of distress because of the impact of the BC-process in relatives. OBJECTIVE: Determine the association between psychological distress and BC in relatives. We studied: kind of kinship with the affected relative(s), degree of involvement with the relative's BC, time elapsed since the BC diagnosis of the relative, and loss of a relative as a consequence of BC. METHODS: The study cohort consisted of women at increased risk of developing BC, adhering to regular surveillance and participating in the Dutch MRISC-study. Two months prior to the surveillance appointment, demographics, general and BC specific distress and experience with BC in the family were assessed. RESULTS: 347 out of 351 participants (mean age 40 1/2) had at least one relative affected with BC. The following variables were significantly, positively related to BC specific distress: having at least one affected sister (n = 105; p < 0.04); close involvement in a sister's BC process (n = 94; p < 0.03); and a recent (less than three years ago) BC diagnosis in a sister (n = 30; p < 0.03). General distress did not show any significant associations with the experience of BC in the family. CONCLUSION: These findings show the impact of a BC diagnosis in a sister, particularly a recent diagnosis, on psychological distress. Women who have experienced BC in their sister may be in need of additional counselling or of more attention during the surveillance proces