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caw (@caw)

Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: 4 days ago | Replies (127)

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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

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Replies to "My 23 year old son was recently diagnosed with ameloblastoma in Orlando, FL. His lower jaw/mandible..."

@anniecl Any major city or smaller city with a major medical center should have at least one oral surgeon experienced with surgical removal of ameloblastoma. Yes, surgical removal generally recommends removing a fair amount of healthy-looking bone around the ameloblastoma. I opted for conservative surgery ~15 years ago, and the ameloblastoma has finally come back (actually two now, presumably from each edge of the original). My surgeon did remove additional bone, but left enough to maintain a natural jaw.

Note: The below is a description of how I am approaching my situation. I am not recommending a particular course of action for anyone else.

My current oral surgeon wants to perform a radical resection and fibular flap, which is pretty major surgery. He was also dubious about the nerve being saved, which would leave me with 1/4 of my face permanently numb. I'm also concerned about the need for speech therapy, physical therapy, possibly a feeding tube for awhile, etc.

Therefore, I'm trying an uncommon approach – I'm requesting evaluation for targeted therapy at MD Anderson. The vast majority of mandibular ameloblastomas have the BRAF V600E mutation, and there is an FDA approved drug treatment for some cancers and "advanced solid tumors" with BRAF V600E. The drug regimen is Dabrafenib + Trematenib.

Unfortunately, the research on using this drug treatment for ameloblastoma treatment is quite limited. You mentioned Stanford – they did a 1-patient case study (tumor shrunk, bone regrew). All I can find in the USA are 1-patient case studies. The biggest study I've found is out of Israel, presented at a conference. All 12 patients had tumor shrinkage and bone regrowth. 10 had already changed course of treatment from radical resection to jaw preservation surgery. The remaining 2 were expected to do so as well.

Nobody knows what will happen in 5, 10, 15+ years. There are definitely risks to pursuing this approach. Personally, I believe the risks are worth it, especially since my dentist has started routinely doing panoramic Xrays and should catch any recurrence early (that's how my current recurrence was caught).

Every step forward seems to take forever, unfortunately.