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Supporting children, young adults and their families up to the age of 30

Supporting children, young adults and their families up to the age of 30

NF1 and Cancer

Reducing your risk

People with Neurofibromatosis Type 1 (NF1) have an increased risk of developing certain types of cancers. While not everyone with NF1 will develop cancer, being proactive about health and understanding potential risks can make a difference. It’s also important to note that even those without NF1 should take precautions to reduce their cancer 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.

More info on NF1 Breast Cancer

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.

Order a radiation card here

Monitor skin and Neurofibromas

Keeping an eye on skin changes and any growth in neurofibromas—particularly plexiform neurofibromas—is crucial. Any changes, such as rapid growth, increased pain or  changes in appearance, should be evaluated by an NF specialist to determine the appropriate course of action.  Even if there is no known neurofibroma seek advice if any of the above symptoms present. 

Sun safety

Staying out of the sun, especially during peak hours, can help reduce the risk of skin damage and cancer. When you do go outside, use a magnesium-based sunscreen to protect your skin from harmful UV rays. These sunscreens are often gentler and provide effective protection.

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.