One of the most important things you can do if you have kidney cysts or tumours is to consult an expert about your treatment. Kidney cancer itself is a rare cancer and consists of several types/histologies. As Birt-Hogg-Dubé syndrome is rare, it can be difficult to find a doctor who has seen multiple cases of the kidney symptoms associated with BHD syndrome; it is quite possible that you will be the first. It is preferable to find a BHD specialist for your treatment. There are BHD specialists located around the world, for example in the UK (Birmingham) and in the USA (Washington).
E-mail contact@bhdsyndrome.org to find your nearest specialist. If it is not possible to see a specialist, you should find a doctor who is willing to look at the literature, perhaps speak to other doctors, and to learn about Birt-Hogg-Dubé syndrome with you. It is important to establish a follow up plan for monitoring your kidney health once you have a BHD diagnosis because you are at risk of developing kidney tumours.
