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 relatives 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 sisters 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 process.