Kidney Cancer Surveillance

If you have BHD, you should have your kidneys screened regularly. This means that if you do develop kidney cancer it can be monitored and treated early.

Some doctors recommend that you should have a kidney scan every year. Others suggest that you only need scans every year if they already have tumours and every three years if you don’t. The recently published European ERN GENTURIS BHD guidelines recommend kidney scans every 1 or 2 years, even if you have no tumours.

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.

• Published 13 October 2023
• Updated October 2024
• Due for review October 2026