Kidney Cancer and BHD

Up to one in three people with BHD may develop kidney cancer during their lifetime. In most cases these tumours grow slowly, rarely spread, and are not life-threatening so long as you get prompt and appropriate treatment. If you have BHD, you should have your kidneys monitored by your doctor.

Some doctors recommend that you should have your kidneys checked every year. Others suggest that you only need kidney scans every year if you already have tumours; and every three years if you don’t. The recently published (2024) European ERN GENTURIS guidelines for managing BHD recommend kidney scans every 1 or 2 years.

If possible, it is best to have an MRI scan, as an MRI can detect very small tumours and does not emit any radiation. If an MRI scan is not available, an ultrasound or CT scanning can be used. Ultrasound does not detect very small tumours, and CT scans emit radiation, which can add up to a high dose if you have scans every year.

All experts recommend that all tumours should be monitored, and only removed once the largest has grown to three cm in diameter. If you are having surgery to remove kidney tumours, it is very important that you tell your surgeon that you have BHD. This may alter the type of surgery you are offered.

• Published October 2023
• Clinically Reviewed in April 2024 by Laura Schmidt PhD
• Updated October 2024 
• Date of next review April 2027