If you or someone you love has neurofibromatosis type 1 (NF1), it’s important to know that women with NF1 between the ages of 30 and 50 have a 5-times higher risk of developing breast cancer. After age 50, the risk is still more than 3 times higher than average.
Along with this higher risk, breast cancers in women with NF1 can be harder to treat. They are more likely to be hormone receptor–negative, meaning they don’t respond to certain hormonal therapies that often work well for other breast cancers.
Because of these challenges, women with NF1 need to have the right screening and support. The National Comprehensive Cancer Network (NCCN) has clear guidelines for women with NF1, but some women may experience pushback from doctors who aren’t familiar with NF1 risks. In these cases, it can help to bring the guidelines to your appointment or seek care at a high-risk breast cancer clinic, where screening and follow-up are more closely managed.
Early detection makes all the difference. With the right screening and support, women with NF1 can find breast cancer when it’s highly treatable rather than when options are limited.
Be proactive: Have a plan, get a scan. If you’re a woman with NF1 age 30 or older, talk with your doctor—or a high-risk breast cancer clinic—about starting or updating your screening plan today.
What’s Recommended
- Start mammograms at age 30 (a full decade earlier than the general population).
- Add annual breast MRI with contrast between ages 30 and 50 when possible—this can catch cancers that mammograms miss.
- If breast cancer runs in your family, start even earlier—10 years before the youngest age of diagnosis in your family.
- Speak up with your doctor—bring the guidelines with you to make sure your care team is aware.
Note: Breast cancer in men with NF1 is also more common than those without, though still quite rare.
Resources:
NCI Article: NF1 Associated with More Cancer Types Than Previously Known
Susan G Komen: Getting a Mammogram
References
Yan, K., Gao, Y., & Heller, S. L. (2023). Breast cancer screening utilization and outcomes in women with neurofibromatosis type 1. Clinical Breast Cancer, 23(4), e200–e205. https://doi.org/10.1016/j.clbc.2023.02.005
Evans, D. G. R., Kallionpää, R. A., Clementi, M., Trevisson, E., Mautner, V.-F., Howell, S. J., Smith, M. J., Whelan, J., Erdös, M., Gareth Evans, D., & Peltonen, J. (2020). Breast cancer in neurofibromatosis 1: Survival and risk of contralateral breast cancer in a five country cohort study. Genetics in Medicine, 22(3), 398–406. https://doi.org/10.1038/s41436-019-0651-6
Madanikia, S. A., Bergner, A., Ye, X., & Blakeley, J. O. (2012). Increased risk of breast cancer in women with NF1. American Journal of Medical Genetics Part A, 158A(12), 3056–3060. https://doi.org/10.1002/ajmg.a.35550
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