Risk management for people with inherited NBN mutations
The National Comprehensive Cancer Network (NCCN) provides risk management guidelines for people with an NBN mutation. If you have tested positive for the 657del5 NBN mutation, we recommend that you speak with a genetics expert who can look at your personal and family history of cancer and can help you determine the best risk management plan. Consider participating in a clinical trial to help experts learn the best options for someone with an inherited NBN mutation. You can learn more about risk management options in our section on Screening and Risk Reduction by Cancer Type.
Breast cancer screening and prevention
- Breast awareness starting at age 18.
- Clinical breast exam every 6 to 12 months starting at age 40.
- Annual mammography with consideration of tomosynthesis and breast MRI with contrast beginning at age 40 or 5-10 years earlier than the youngest breast cancer in the family.
- There is not enough research for NCCN to recommend risk-reducing mastectomy for women with an NBN mutation. Consideration of risk-reducing mastectomy may be based on personal and family history of cancer.
Ovarian cancer screening and prevention
There is not enough research to recommend risk-reducing salpingo-oophorectomy for women with an NBN mutation. Consideration of risk-reducing surgery may be based on family history.
If you are a person with an NBN mutation, you can find peer support through the following resources:
- Register for the FORCE Message Boards to connect with others who share your situation. Once you register, you can post on the Share Your Mutation board to connect with other people who carry an NBN mutation.
- FORCE's Peer Navigation Program will match you with a volunteer who shares your mutation and situation and provide you with a free resource guide.
- Contact the FORCE impact leaders in your area to link to local support groups and other resources.
- Attend a virtual support meeting in your area.
- Read the stories from members of our community.
The following screening and prevention studies are open to people with an NBN mutation.
- NCT03805919: Men at High Genetic Risk for Prostate Cancer. This is a prostate cancer screening study using MRI in high risk men. This study is open to men with BRCA2 and other mutations.
Visit our Research Search and Enroll Tool to find additional prevention and screening studies.