NF1 and Cancer
Reducing your risk
Here are ways to stay vigilant:
Regular check-ups
Routine check-ups with healthcare providers familiar with NF1 can help catch any changes early. Early detection is often key to successful treatment.
Breast Cancer awareness
Women with NF1 are at up to five times increased risk of breast cancer between the ages of 30 and 50. In the UK, women with NF1 are entitled to screening starting at age 40, but guidelines recommend screening from age 30 using MRI. We are actively campaigning for better awareness and access to these screenings for women with NF1. Go to the More info on NF1 & Breast Cancer and click here for a downloadable letter to take to your GP to ensure you get screening from the age of 40.
Avoiding X-rays
When possible, try to avoid X-rays and consider alternative non-radioactive imaging scans, such as MRI or ultrasound. However, it’s important to recognise that there are situations where an X-ray is the best diagnostic tool available. In these cases, the benefits of obtaining crucial information often outweigh the risks.
To help communicate this, we have produced a business card-sized resource for your child to take to hospital, explaining that those with NF1 should avoid radiation whenever possible.
Monitor skin and Neurofibromas
Sun safety
Adopt a healthy lifestyle
Maintaining a healthy diet, staying active, and avoiding smoking and excessive alcohol may help lower cancer risks. These lifestyle choices benefit everyone, regardless of NF1 status.