Breast cancer research and treatment · 2026
Awareness, need and utilization of breast cancer risk management resources in women with hereditary cancer susceptibility.
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Parkinson Gerneiva, Friedman Sue, Hodan Rachel, Kurian Allison W
Аннотация
BACKGROUND: Germline genetic testing is increasing. While testing barriers are well characterized, less is known about post-testing needs and utilization of screening and prevention resources by women with pathogenic variants (PVs) in breast cancer susceptibility genes.
METHODS: A 38-question online survey was developed by Facing Our Risk of Cancer Empowered (FORCE), a patient advocacy group, and administered electronically to subscribers from February-May 2024. Study eligibility criteria included female sex and a germline PV conferring elevated lifetime risk of breast cancer (ATM, BARD1, BRCA1, BRCA2, CDH1, CHEK2, PALB2, PTEN, RAD51C, RAD51D, STK11, or TP53).
RESULTS: Of 1,025 respondents who initiated the survey, 937 were women. Most were non-Hispanic White (91.7%) and from the United States (81.6%). The most common PVs were BRCA2 (31.4%), BRCA1 (25.5%) and CHEK2 (9.2%). The most frequently used resources were education and information services about medical options (39.3%) and peer support (28.1%). Few respondents used financial navigation (4.0%) or financial support (5.3%), but up to 45% reported needing these services. Among breast screening users (53.8% used mammogram, 42.2% magnetic resonance imaging, 19.4% ultrasound), 37.8% found it hard to prepare emotionally for results and 14% found it hard to pay for screening. One-third (37.1%) of respondents found deciding whether to have risk-reducing mastectomy hard; two-thirds (64.0%) found physical recovery hard, more than half (60.2%) found emotional recovery hard, and one-quarter (24.7%) found paying for risk-reducing mastectomy hard.
CONCLUSION: In this contemporary sample of women at elevated risk of breast cancer, more than one-third had unmet financial needs and up to two-thirds had difficulty with screening or risk-reducing surgery. Closing these gaps will be essential to improve outcomes for women with hereditary breast cancer.
METHODS: A 38-question online survey was developed by Facing Our Risk of Cancer Empowered (FORCE), a patient advocacy group, and administered electronically to subscribers from February-May 2024. Study eligibility criteria included female sex and a germline PV conferring elevated lifetime risk of breast cancer (ATM, BARD1, BRCA1, BRCA2, CDH1, CHEK2, PALB2, PTEN, RAD51C, RAD51D, STK11, or TP53).
RESULTS: Of 1,025 respondents who initiated the survey, 937 were women. Most were non-Hispanic White (91.7%) and from the United States (81.6%). The most common PVs were BRCA2 (31.4%), BRCA1 (25.5%) and CHEK2 (9.2%). The most frequently used resources were education and information services about medical options (39.3%) and peer support (28.1%). Few respondents used financial navigation (4.0%) or financial support (5.3%), but up to 45% reported needing these services. Among breast screening users (53.8% used mammogram, 42.2% magnetic resonance imaging, 19.4% ultrasound), 37.8% found it hard to prepare emotionally for results and 14% found it hard to pay for screening. One-third (37.1%) of respondents found deciding whether to have risk-reducing mastectomy hard; two-thirds (64.0%) found physical recovery hard, more than half (60.2%) found emotional recovery hard, and one-quarter (24.7%) found paying for risk-reducing mastectomy hard.
CONCLUSION: In this contemporary sample of women at elevated risk of breast cancer, more than one-third had unmet financial needs and up to two-thirds had difficulty with screening or risk-reducing surgery. Closing these gaps will be essential to improve outcomes for women with hereditary breast cancer.