My 23 year old son was recently diagnosed with ameloblastoma in Orlando, FL. His lower jaw/mandible cyst was seen on annual dental xrays and he was referred to a local oral surgeon. The pathologist we met before surgery said it was most likely OKC vs a dentigenous cyst. He had surgery to remove the cyst in the surgeon's office with a local and IV sedation and went home afterwards. (He is well-healed now, back to work and school and will be on a soft diet for 3-4 months while the bone graft heals.) However, the pathology report came back with amelobalstoma. He has been referred to another local Orlando MD who is a head and neck surgeon for "monitoring" starting in 3-4 months after he is healed.
I am a former oncology nurse and everything I read mentions removing healthy tissue around the ameloblastoma in the hopes that all the tumor cells will be removed to lessen the chance of recurrence. Because the surgeon wasn't expecting this diagnosis, I believe he only removed the cyst and the lining (like a balloon) that surrounded it. We feel our son should be seen at a major medical center where the physicians have more experience with this type of tumor. We would at least like a 2nd opinion at such a center to tell us if he should actually have more tissue/bone removed asap, or if monitoring by a local head and neck surgeon in Orlando is appropriate. Besides the Mayo Clinic, are there other centers of excellence for ameloblastoma? Stanford appears to be doing research. Is there anything at MD Anderson, Cleveland Clinic? Anywhere else?
Thanks so much in advance. Annie