Diagnosed with Ameloblastoma

@erikm went to MDA with a similar situation. Tumor was already removed by a local oral surgeon. MDA evaluated and were not willing to use targeted therapy at that time. Not sure which doctors were on his evaluation team or other details.

Personally, I think it makes a huge amount of sense to follow up a conservative surgery with the targeted chemotherapy - presuming there is one. Conservative surgery will leave a few cells. About 80% of mandibular ameloblastomas have the BRAF V600E mutation. Wipe out those cells with targeted therapy.

My tumor has the BRAF V600E mutation, so I am on the targeted therapy. I haven't investigated whether the mutations of the other 20% have targeted therapies again.

I'll mention again - it took about 15 years for my ameloblastoma to come back to a meaningful size after conservative surgery. That's when I went to MDA, was clear that radical surgery was not an option for me, and then they supported using the targeted therapy (after confirming the genetics) - for an actively growing tumor.

I'll mention this truism again: Surgeons want to do surgery. Surgery is the "standard of care" approach to ameloblastoma.

My current oncologist at MDA is Neal Akhave:
https://faculty.mdanderson.org/profiles/neal_akhave.html
This is typically a very slow growing tumor. If it was removed, I wouldn't be in a rush to get radical surgery unless ongoing monitoring showed something concerning going on.

Thanks for explaining all of that @tomschwerdt ! I just got a call from MD Anderson intake. They seem to indicate the same thing, that they wouldn't be able to do anything for me without an active tumor. I also appreciate your sharing the name of your oncologist, in the event that I get an opportunity to work with him. I'm definitely not in a rush to get radical surgery and want to explore any and all possibilities before it returns. Since that could be many years down the road, I'm hoping that time is on my side. Thanks, again!

I had the same surgery 10 years ago for ameloblastoma. What kind of follow up testing do you get done and how often?

My original oral surgeon used a panoramic ("pano") X-ray - before the surgery, after the surgeries and annually after that. After 5 years of followups, I was pronounced cured and told I didn't need to come in for them anymore.
https://en.wikipedia.org/wiki/Panoramic_radiograph
My dentist spotted the regrowth on a pano X-ray - I hadn't had one in 10years, just the usual "bitewing" dental X-rays. Apparently my new dental insurance covered one pano every 4 years, so we did one.

Currently MD Anderson is having me get head CT scans (with contrast) since I am under active treatment and they can get a better view of exactly what's going on.

If I were in your situation, I would try for an annual pano Xray. I expect your PCP should be able to justify sending you for one due to the history of ameloblastoma and prior surgery.