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.

Hello, again! I'm just wrapping up a week at MD Anderson and thought I'd pass along my notes from the visits in case they'd help anyone else.

We met first with Dr. Myers, the surgical oncologist, who read the CT results from a scan taken two weeks ago back home in Nashville. He saw more than just bone regrowth, indicating that it's likely the amelo is still present and requesting his own CT. We had that CT the next day and then met with Dr. Akhave. I see why @tomschwerdt chose to go with him for treatment! Dr. Akhave was willing, assuming the markers for V600E come back positive, to use targeted therapy to shrink the tumor prior to surgery. Dr. Myers let us know that the surgery he recommends would be the same (radical) with or without tumor shrinkage. With that in mind, it seems that all roads lead to surgery. That's a bummer, but not entirely unexpected. I've got a surgery date here at MDA, but in the meantime, I'm going to see if I can find a provider back in Nashville that I trust as much as I trust MDA to do the radical surgery. It would certainly be easier and cheaper to do close to home.

My thoughts are with everyone in this forum. I hope that you all find the path that works for you!

Hi everyone, new to this forum with a recent diagnosis of ameloblastoma in the right maxilla. I have seen two doctors: one an Orthognathic Surgeon who told me he could remove the tumor in a 2 1/2 hour surgery with a flap using skin from my mouth. The second surgeon is an ENT who specializes in tumors (although has never operated on an ameloblastoma in the maxilla) He will first try a conservative surgery. However, suggests that pending actually being in the surgery and seeing how far the tumor extends (given the edges indicated in scans and biopsy), he may need to do the more radical surgery with fibular flap, arteries from my neck; etc. which will take approx 10 hours. My next step in that process is to meet with a reconstructive vascular surgeon. The thought of this fibular flap---and of being in Icu for a week on a feeding tube--is terrifying. How can two doctors approach so differently? I am in NY. This has led me to believe I need a 2nd or 3rd opinion.. In any case, I can see this is a very supportive group, and am wondering if anyone has used a doctor in NYC for a ameloblastoma maxillary surgery. Thank you all. Just reading your messages between the group is very comforting.

I had ameloblastoma in the left maxilla 3 years ago. I went to Mayo Clinic in Rochester and had Drs. Arce and Ettinger perform the surgery. It was 10.5 hours, 1 week in the hospital with feeding tube and 1 week in an apartment with feeding tube. After 2 weeks feeding tube was removed and I was allowed to go home with a CAM boot on my left leg where they harvested the fibula free flap. After 3 years of follow up all is clear and have 2 more years to go. I would highly recommend Mayo Clinic.

Hi @la93 Because an Ameloblastoma is very rare, you should definitely enquirer as to the surgeon’s experience with this. This applies to the surgeon who has recommended the fibula free flap as well. The latter operation requires an experienced team to perform yet the timeline given sounds about right. That surgery, horrible as it might sound, often has great results, mine included.
In a nutshell, consult to find experience. This is your life, not the local doctor’s.
Personally I would recommend Mayo as well. However Mayo has trained many surgeons around the world in this procedure so perhaps your local team may be well versed.

@therock. thank you for your response. I am reaching out to Dr. Arce and the Mayo team for a consultation. Assuming that Mayo can recommend a place for you to stay. I'd be coming from NY. I worry about needing to get back to Minnesota in terms of distance and time if I needed them. But aside from that, willing to travel to get the best care. I do worry that "surgeons do surgery" and will they take a conservative approach if possible? On the other hand, who wants to do a surgery a second time, so maybe the radical surgery is better now.... I'm 65 but active and in great health, still working and travel quite a bit for my job. Hard to know what to do.

@hrhwilliam I can see what a great support you are to everyone on this forum, so thank you for your response. May lean into this group as I get closer to treatment. It's a lot, as you know! Part of a club we never asked to be in... I plan to reach out to Mayo Clinic, Dr. Arce. I only worry about the distance to get to my care team if there's any complications later, since I'm in NY. PS I am terrified of this feeding tube. To me that's the most frightening part now. Maybe because that was only just mentioned on my last visit.