Long-term cohort study of women at intermediate risk of familial breast cancer: experiences of living at risk

Aims: To identify how women adjusted to living at intermediate risk of breast cancer six years following risk assessment, and what factors contributed to health service usage. Method: Two studies are reported. Both report data from a cohort of women found at intermediate risk of breast cancer six years previously. In the first, 30 women with a range of Cancer Worry Scale (Lerman et al. Health Psychol 1991;10:259–267) scores were interviewed about how they lived with their risk of cancer and their use of health resources. The generalisability of these findings was tested in a sample of 387 women from the same cohort using psychometrically appropriate measures. Findings: In study 1, women scoring above the median baseline BCWS scale score were most likely to perceive their family history as a burden, exaggerate their susceptibility to breast cancer, not be reassured by genetic counselling, be focussed on the need for mammographic screening, and have a low reliance on breast self-examination. Key findings of the second study were that over a quarter of the cohort were experiencing at least moderate levels of intrusive worries. Worries were associated with perceptions of high personal vulnerability to and severity of cancer and breast cancer being highly salient. Women aged over 50 years with high levels of worry-related distress were most likely to request a mammogram. Conclusion: The high levels of distress in this cohort reinforce the need to provide appropriate interventions for vulnerable women following risk assessment