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. This is often also true for the skin and lung symptoms of BHD. 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).
In the United States, there are also centres of excellence for BHD lung care; see BHD Pulmonary Centres for contact details.
E-mail firstname.lastname@example.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.