The Children's Tumor Foundation
10/07/2026 | Press release | Distributed by Public on 10/07/2026 08:06
NF1 & Breast Cancer
What to Say to Your Doctor
Talking with a healthcare provider about breast cancer screening can feel like a lot, especially if they do not see many people with NF1.
You do not need to remember every recommendation or explain NF1 perfectly.
You can save this page on your phone, print it, or hand it directly to your healthcare provider to help start the conversation.
You can say:
"I have neurofibromatosis type 1, or NF1. I understand that NF1 can increase my risk of early breast cancer and may change when I should begin screening. Can we talk about what screening is recommended for me?"
If you want to be more specific, you can say:
"Current NF1 surveillance guidance recommends annual mammography beginning at age 30 and considering annual contrast-enhanced breast MRI between ages 30 and 50. Can we talk about whether these recommendations apply to me?"
Questions you may want to ask
You do not need to ask all of these. Choose the ones that feel most helpful to you.
When should I start breast cancer screening?
Should I have a mammogram, breast MRI, or both?
How often should I be screened?
Do I need a referral to a breast specialist?
Does my personal or family history change my screening plan?
Who should I contact if I notice a change or have a concern?
Know your screening timeline
Beginning at age 30
Annual mammography
Ages 30-50
Consider annual contrast-enhanced breast MRI
Your healthcare provider can help determine the screening plan that is right for you.
You can bring this with you
It is okay if your healthcare provider is not familiar with NF1-specific breast cancer screening recommendations.
You can show them this page and review the recommendations together.
You do not have to have all the answers. This resource is simply here to help you start the conversation and advocate for the care you need. If you need help finding a healthcare provider familiar with NF, visit our Find a Doctor page to search for an NF clinic or specialist near you.
A note about this resource
The Children's Tumor Foundation supports people affected by NF.
The breast cancer risk and screening information in this resource is specific to people with NF1 and should not be assumed to apply to NF2-related schwannomatosis or other forms of schwannomatosis. The screening recommendations included in this resource are based on established guidance for people with NF1, including the National Comprehensive Cancer Network (NCCN) Guidelines for Patients: Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate Cancer.
This resource is for educational purposes and does not replace medical advice. Please talk with your healthcare provider about your individual health and screening needs.
The Children's Tumor Foundation published this content on October 07, 2026, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on October 07, 2026 at 14:06 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]