Diagnosed with 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!"

Likely Dr. Ettinger? Along with Arce and Mueller they are my team as well for a mandible reconstruction however not for Ameloblastoma but for Osteoradionecrosis. Amazing stuff they do. If it wasn’t for HIPA, we could all get together (at Rochester in the Summer) and celebrate this wonderful team.

In the early days of the pandemic lockdown, I had an MRI for my pituitary gland requested by my PCP and while not in the target zone, a 'mass' could be seen in my upper right sinus cavity. So I was referred to an ENT but it took weeks to get into to see him because COVID-19 protocols were fluid. After several weeks, my ENT performed a 360 CT scan confirming the tumor's location and size. It was removed through my nose via day surgery a few weeks later and the pathology confirmed the removed tissue was an Ameloblastoma tumor.

With follow-ups exams (via video camera up my nose) with my ENT, and while unspoken, I could see the concern in his body language and facial expressions. The tumor was re-growing. An MRI six months after removal confirmed such and I was referred to a local maxillary surgeon and dental specialist (prosthodontist).

But I ended up choosing the Mayo Clinic with Dr. Arce and his partner (name escapes me). After a six hour maxillary re-section surgery with an FFF, the tumor was removed for the 2nd time 13 months after the ENT's surgery.

I visit Rochester once a year (during the summer, never again in the winter, I'm from Texas) to see Dr. Arce and Dr. Mueller. My local ENT performs a nose video exam and orders an MRI once a year to confirm no re-growth.

The conversation with @meadowj made me start thinking about imaging.

Are CT scans meaningfully better than simpler/cheaper/faster techniques for tracking an ameloblastoma? A panoramic Xray gives you a darn good 2D view and should cost very little (with insurance). CT with contrast also means a pretty decent sized injection of iodine.

I never had one for my original diagnosis, just a panoramic Xray. 5 years of annual followups were panoramic Xray as well. The regrowth was discovered on a panoramic Xray.

Sure, you get 3D with a CT scan, but depending on the radiologist, my CT reports from MDA might have 3D measurements of the tumor. Or just 2D measurements. Or none, just a ballpark "it looks about the same" type result.

I plan to discuss with my oncologist when I next go to Houston.

Hey Tom-

CT showed no ameloblastoma activity. Very minor bone regrowth - not enough to consider reconstructive work yet. So moving in the right direction. Still going to continue with monitoring, but now at every 6-months intervals.

Hope you’re doing well!

-E

Hey Erik - it's been a few months, how are things going?

Thank you for the update!

I haven't been to the thread in a while but I thought I would come to check in!

We've had a few follow ups and the doctor is happy with the bone growth in the area where the ameloblastoma was removed. We will continue follow ups, slowly spacing them out. Basically just monitoring for reoccurrence.

Based on what you mentioned @tomschwerdt I did ask the doctor if we could check if the BRAF V600E mutation was present and it tested negative for the mutation.

I was kind of sadden by the news. I was hoping that maybe we had another treatment option to surgery in the case of reoccurrence.