Screening and prevention for inherited cancer: exploring the experiences of BRCA mutation carriers in Newfoundland Labrador

Background Females with BRCA 1/2 gene mutations have increased lifetime risk of breast and ovarian cancers. BRCA mutation carriers in NL are not engaging in cancer prevention and screening behaviors according to recommended guidelines. Methods Qualitative interviews were combined with a provincial survey to conduct a comprehensive assessment of BRCA mutation carriers’ opinions towards risk management services. Results Female BRCA mutation carriers’ risk management is influenced by numerous and varied factors including clinical and social influences, family and personal history of cancer, life stage, health system access, and family physicians’ BRCA knowledge and expertise. Individuals were overwhelmingly in support of a centralized and coordinated inherited cancer program. Conclusion The current system of patient self-navigation and reliance on family doctors to coordinate screening and prevention services results in some patients struggling to access the ongoing management they require. An inherited cancer risk service must recognize the complexities that influences individuals’ behaviors towards risk reducing services