Diagnosed with Ameloblastoma

After seeing Dr. Arce for my annual visit first thing this morning, they worked me in today to remove the granulation tissue for the 4th time (by Dr. Wu). But it has been two years since the last time it was removed (Dr. Van Ess) and I suspect I will be having this done every year or two. Everything is good with my permanent prosthetic.

It is Facebook so there's that...but it is a private group not to dissimilar to this community. Unlike this Mayo group, the vast majority of the members of the private Facebook group are not receiving the level of care that we get with Mayo.

How are you doing with your hyperplastic tissue growth and permanent prosthetics? Is the FB group secured? It still exposes our identity there.

for those that are on Facebook, there is a private Ameloblastoma group:
https://www.facebook.com/groups/154326351301307/
although I sometimes feel bad reading about others with Ameloblastoma tumors who don't have access to the excellent Mayo care.

Just wanted to update the group that they did CT scan in Feb 2024 and they found that the plate dropped a little bit into my mouth, only option was to remove the plate through surgery. I completed radiation in Sep 2023, they had to wait 6 months after radiation. Did MRI in Apr 2024, no tumor growth. Finally got the plate removed in May, the bone is healthy and fused, so no biopsy done during surgery. It's been 6 weeks since I got the plate removed and next MRI scheduled for Oct 2024 to monitor the tumor. Working on mouth opening exercises, still around 15mm opening.

An uncontrolled growth of cells has always been my definition of cancer as well Tom. And there are some skin cancers that do not metastasize yet they are cancers. It seems only the common or “popular” growths get the proper recognition in the medical journals. Thanks for your input Tom. I wish it was within my royal powers to grant you an honorary medical degree as I most certainly would. Until then I and all very much appreciate your input.

I will comment on the "is it cancer" thing. The below is my opinion, based on the information I have found in the medical literature.

An ameloblastoma is incredibly rare. Having one metastasize is somewhat rare (low single-digit percentage) - but it is documented in the medical literature. That said, even medical professionals who know what an ameloblastoma is... almost certainly have no idea this happens. I only found it in the literature last year, not back in my 2007/2008 literature searches.

It's taken a long time for me to get around to the point of view that ameloblastoma actually is cancer.

Ameloblastoma is an uncontrolled growth of cells (tumor) which destroys the tissues around it and sometimes will metastasize. It meets all the requirements of cancer. It's just that the wider medical community hasn't caught up yet.

Not uncommon in science. We get new information and need to update our understanding of the world.

Anybody have a contact for who officially defines "is this cancer?" so that I can have a chat with them? Won't be the first time I've disputed world-class experts, usually successfully - even outside my area of expertise.

Hi @charlesvalley . I will add my welcome. You have excellent advice here from @anbar04 and @tomschwerdt as to the specifics of ameloblastoma. From my perspective, I have had the surgery that they have experienced yet for reasons other than ameloblastoma.
It is rare, very rare. It is also not considered cancer as it does not metastasize to other parts of the body. And as far as I know it is specific to the bones around the teeth only. GP’s I have talked with about this usually have never heard of it and had to look it up after I spelled it out for them, so don’t be surprised if you are met with the same lack of understanding.
Anyway good luck with this. We are here for you. And as I often said to anbar, “Courage”.

Everyone: A bit of a squick warning here. Kinda graphic, so you likely should just skip.

@charlesvalley Okay, to answer the biopsy question: Back in 2007, I was given a local anesthetic. It ended up being totally ineffective below skin/gum tissue level. I still remember the crunch as the oral surgeon got through the thin remaining shell of my jawbone.

I then spent the next 20 minutes in what is now tied for the most painful experience of my life: The oral surgeon digging around in my jawbone, taking tissue samples and saying "Let me just try for a bigger piece" again and again and again while digging around in my jawbone. How do I know it was 20 minutes? Because I could see a clock while I held myself rigid and sweating. What tied for it painwise? Kidney stone last year. My neighbor (who has had both multiple times) tells me that the kidney stones were far worse than childbirth was for her.

This time around? I insisted on a general anesthetic for the biopsy. I just couldn't handle the prospect of going through that digging again while awake.

Local anesthetics, general anesthetics and opioids have far less effect on me than most people. Unfortunate from a pain management standpoint, pretty good from a "well, I'm never gonna get addicted to this ineffective stuff" standpoint and kinda amusing from a "Yep, I'm still awake, doc!" standpoint. It literally took IV fentanyl to take the edge off the pain for my kidney stone. My dentist gives me probably 4x the normal local anesthetic dose, and it's typically wearing off by the time I'm checking out after a procedure, which is perfect.

@charlesvalley

Hey, and welcome to our little club! Hopefully your specialist will take a biopsy and have it sent somewhere that can confirm what's going on in your jaw. For me, getting pathology to actually report an answer on the biopsy took quite awhile - both times.

Disclaimer: I'm a scientist, but I am NOT a medical professional. You need to do what you and your medical team find is right for you.

Based on the literature I've read, generally speaking ameloblastomas are relatively slow growing - but they don't stop without treatment and can grow more quickly. It is something which needs to be dealt with. An untreated ameloblastoma is... bad.

"Radiolucency" means that the X-ray shows something has been eating away at the bone in your jaw, which would be typical for an ameloblastoma. It could also be a variety of other things. Personally, getting a biopsy and answers was very important to me.

For me, both in 2007 and 2023 I didn't have any symptoms before the anomaly (radiolucency) was spotted on a dental X-ray. By the time I had treatment, there was pain in the jawbone.

There are two conventional/ "standard of care" approaches:

A) Conservative surgery
B) Radical surgery.

After a deep dive into medical literature, I originally chose option A, conservative surgery - and the ameloblastoma came back ~15 years later. I don't regret that choice. I again did a deep dive into the (fairly limited, but significantly updated) medical literature about ameloblastomas this time around and with my medical team at MD Anderson Cancer Center, I chose to be a guinea pig. Somewhere around 80% of mandibular (jawbone) ameloblastomas have the BRAF V600E mutation. There is an FDA approved drug regimen (chemotherapy) for other cancers targeting the BRAF V600E mutation, so after confirming my tumors have that mutation - that's what we went with, starting last October.

Other than the jaw pain vanishing within a week of starting the targeted drug treatment, progress has been good, but slow. There's bone regrowth (indicating tumor shrinkage) - but it's not nearly as fast as I had hoped.

I am very fortunate that my insurance pays for the (rather expensive) targeted chemo drugs other than their top copay amount, and I found a "copay assistance" program from the drug manufacturer.

Thank you. I appreciate your kind words. And likewise, it's complicated but not a death sentence.