What does risk of future cancer mean to breast cancer patients?

Newly diagnosed breast cancer patients greatly overestimate their risk of developing contralateral breast cancer (CBC). Better understanding of patient conceptions of risk would facilitate doctor-patient communication and surgical decision making. In this mixed methods study, we prospectively examined breast cancer patients' perceived risk of future cancer and the reported factors that drove their risk perceptions.

Women age 21-60 diagnosed with breast cancer without a BRCA mutation or known distant metastases completed a study interview between surgical consult and surgical treatment. Participants completed a 12-item Perceived Risk Questionnaire, which assessed 10-year and lifetime risks of ipsilateral local recurrence, CBC, and distant recurrence. Patients provided qualitative explanations for their answers.

Sixty-three patients completed study interviews (mean age 50.3). Participants were primarily White (85.7%) and 90.5% had attended college. Patients estimated their 10-year risk of CBC as 22.0%, nearly 4 times the established 10-year risk. Women attributed their risk perceptions to "gut feelings" about future cancer, even when women knew those feelings contradicted medically established risk. Perceptions of risk also reflected beliefs that cancer is random and that risk for local recurrence, CBC, and distant recurrence are the same.

Our findings point to the need for novel ways of presenting factual information regarding both risk of recurrence and of new primary cancers, as well as the necessity of acknowledging cognitive and affective processes many patients use when conceptualizing risk. By differentiating women's intuitive feelings about risk from their knowledge of medically estimated risk, doctors can enhance informed decision making.