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Two hands holding a model of a kidney

Kidney Cancer and BHD

Around 1 in 3 people with BHD get kidney cancer. In most cases these tumours grow slowly, rarely spread, and are not life-threatening so long as you get appropriate treatment. If you have BHD, you should have your kidneys monitored by your doctor.

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. 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 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.