Women with NF1 Have a 5X Higher Risk of Breast Cancer – Have a Plan, Get a Scan!
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.
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.
NCI Article: NF1 Associated with More Cancer Types Than Previously Known
Susan G Komen: Getting a Mammogram
Note: Breast cancer in men with NF1 is also more common than those without, though still quite rare.
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.
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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I canceled my MRI today because told I was going to be charged $820 out of pocket for a MRI. I have NF1 plexiform type. I am also on disability support pension. On recent breast ultrasounds I was noted to have
micro calcifications in the bilateral retroareolar positions, more so on the right, with prominent retroareolar ducts with echogenic foci on the ultrasound. My breasts get painful as do my nipples. I have worked as a Registered Nurse for 37 years and I find this very upsetting. I have paid for all my health care needs right up until now. Unfortunately Rates, water, and electricity bills have to be paid to. I was told that I can’t have my MRI paid for because I don’t have the BRCA1/2 gene. I haven’t even been tested for that. All I know is that I am at high risk because of Neurofibromas type 1. This is what IMED at North Lakes Queensland Australia and their protocol refused to accept. They claim it is not a Medicare rebatable scan This is not my only medical condition.