Diagnosed with Ameloblastoma

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.

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

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!

@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.

Finally got the biopsy results from the second surgery on April 7th: recurrent ameloblastoma. Not at all a surprise. Since the oral surgeon "removed" it during the surgery, I had assumed that I was good to go, at least until it comes back. But, when the oral surgeon called to discuss the biopsy, he also sent a referral to what he described as a head & neck oncologist here in the Nashville area. If the tumor has been removed, why would I need to see an oncologist for follow-up?! Anyway, the oncologist wants to do the radical surgery option. I'm not ready for that yet. @tomschwerdt - do you know if MD Anderson is also using the targeted thereapy as an adjuvant treatment?

I can see how a different radiologist reading the results each time would be annoying. Actually, you'd think that these days, all of the data from a particular view could be fed into an AI of some sort and it would generate a summary of the changes that are apparent. Maybe that's just wishful thinking.

Had my periodic trip to MDA for evaluation, CT, etc.

Pretty routine: Tumor considered "stable" with additional minor jawbone remineralization (bone regrowing and/or getting denser) around the tumor area. Continuing the BRAF V600E-targeted chemo.

Very slow progress - and it's hard to really judge when I have a different radiologist performing the CT eval each time and each of them writing in their own style. I might get size measurements of the tumor in 3 dimensions, or 2 dimensions or 1 dimension or no numbers at all. Comparison is generally against the CT from 3 months prior.

One radiologist noted TMJ arthrosis (arthritis) awhile back, none of the others have mentioned it. What I would really like is to have her evaluate across all the CT imaging.

One thing I will say: MD Anderson works very, very hard to make it the best patient experience possible. Everyone really listens. Everyone really cares. I'm a person there, not just a patient being treated for ameloblastoma.

Thanks for your reply, @tomschwerdt!

I appreciate that you and a few others have updated us on the targeted approach that some of us may end up trying down the road. Glad to hear that your thyroid is back in line. That can really affect so many of our systems!

Hey, the chemo was better once I was on an appropriate dose of thyroid hormone.

The main ongoing side effects I notice are: I overheat more easily (poorer thermal regulation) and my energy/endurance is somewhat lower than before starting the targeted chemo. I've been slowly losing the weight I initially gained before we got the thyroid hormone back to appropriate levels.

A rapid regrowth is definitely troubling. As I've said before, after my conservative surgery I had monitoring for 5 years with zero regrowth. After about 15 years regrowth was caught on a dental X-ray.

I've been thinking about it a lot, and I'm wondering whether all these CTs are actually necessary for just monitoring. High-resolution Panoramic X-rays are a lot cheaper, and that's all I had the first time around.

Hello, again!

It's been quite a while since I first joined the group back in Feb/Mar 2024. Life has a way of making you focus on the wrong things if you let it (career issues, politics, etc). Ameloblastoma has a way of correcting that unfortunate tendency.

I had a second conservative surgery this week to remove another growth, the exact composition of which hasn't been determined yet from biopsy.

The first surgery was Feb 14, 2024. I had multiple follow-up appointments with the oral surgeon in the past year. At each, he did the panoramic xray and ct scan with no notable findings. At the 6-month follow-up visit he saw a small radiolucency at the same site as the initial tumor had been. We decided to give it another 6-months and see what happened in the meantime, knowing that, if it's the amelo regrowing, it would be slow. At my 1-yr appointment, the radiolucency was twice the size as it had been at 6-months. So, I'm 4 days out from the second surgery which involved removing the growth and more bone this time. Waiting on biopsy, which he says might take longer this time due to the bone content?

All of that being said, @tomschwerdt , how are you doing with your chemo these days? I know you said it was initially rough, but it's been looking up since then?

I'm trying to wrap my head around the possibility that this thing has come back in just a year and what that might mean going forward. Best wishes to everyone in the amelo "club!"