BHD kidney tumours are slow growing, and often do not spread as long as they are smaller than 4 cm.
BHD experts recommend having regular kidney scans, and removing any tumours when they reach 3 cm. In most cases, BHD patients who develop kidney cancer will only need one surgery in their lifetime to remove tumours.
In rare cases, usually when someone doesn’t know they have BHD and didn’t have regular scans, a BHD patient only finds out they have kidney cancer very late in the disease course. This might mean that the tumour has spread, or that there are so many tumours in one kidney, that the kidney has to be removed. In these cases, the patient will need additional treatment.
There are a number of treatments available such as tyrosine kinase inhibitors, mTOR inhibitors, and immunotherapy.
More detailed information about treatment can be found here:
- Surgical treatment for tumours that have not spread from the kidneys
- Non-surgical treatments for tumours that have spread to other parts of the body.
Further basic information on these treatments can be found in the kidney treatment section of BHDSyndrome.org.