Who is the guru re: parotid tumors? I have a Parotid tumor and am trying to guide my MD re: best course of action. I am a carrier of the BHD gene with lung and skin issues.
Not a guru, but I’ve had bilateral parotidectomies. This was before I was diagnosed or knew about BHD. I had a single pleomorphic adenoma tumor on the left side, but multiple (8) oncocytomas on the right side. It has been 16 years since my left side surgery and 8 years since the right side surgery. Have had no recurrence since. I believe they are dealt with as in the general population. The most important thing is to find a surgeon with a lot of experience with this type of surgery. I had my surgeries at Mayo’s in Rochester, MN.
Just in case you haven’t seen this, there is a great summary of the current state of knowledge here:
THANK YOU, bhdsyndrome.org! What a great resource!
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