Diagnosed with Ameloblastoma

Hi @roblem
About 2 years. My teeth and gums were not in the best shape to begin with.
September 2022 was my last radiation treatment. Before they would start radiation, I had to have 5 teeth pulled.
I was able to get partial upper and lower plate dentures. Then in August of 2024 I had one of my bottom teeth still left give me some issues. Per the dentist, no big deal. He pulled it then added a tooth to the lower partial and all was good. I later learned that HBO therapy should have been prescribed.
May 2025, I wake up with what I didn't know at the time was a fractured jaw. It looked liked I had half a golf ball under my cheek plus the pain. It fractured at the spot where the tooth was pulled. No blood flow, no healing.
August 2025, Jaw reconstruction. 9 days in the hospital, 6 in CCU.
February, 2 2026, Outpatient Debulking surgery to shave back the new gums and also to expose the post for my new bottom prosthetic teeth.
Tomorrow 3-9-2026, I have an appt for the 2nd impressions for my new teeth. During the mandible flap reconstruction, they inserted post for prosthetic bottom teeth. By July, I should have teeth again!

@tdg04 Drs Lee and Rabinowitz at VCU in Richmond VA did my mandible flap surgery. They are excellent. Let me know if you have any questions.
My jaw fractured from the effects of radiation for tonsil cancer. I've been through it from soup to nuts. I just started the process for my prosthetic teeth.
God bless and please let me know if you have any questions.

@tomschwerdt asking for my husband - would you be willing to share who your surgeon was for the more conservative initial surgery? We don't like the first opinion we were given.

@tomschwerdt asking for my husband - would you be willing to share who your surgeon was for the more conservative initial surgery? We don't like the first opinion we were given.

Hey @caw @colleenyoung

Just joined the community today. Being such a rare tumor, it's hard to find a place where you can have a good discussion with people who understand. Hope it's not too much of an info dump below:

My original ameloblastoma diagnosis was in 2007. Even getting a diagnosis from the biopsy took forever. The oral surgeon initially wanted to perform a resection and titanium plate, we settled on removing the tumor and as much margin as possible while keeping the basis for a normal mandible. Lost 2 teeth. After initial healing, had an autologous bone graft (from far back on my mandible, behind the last tooth), followed by 2 dental implants. After 5 years of followup panoramic X-rays I was pronounced "cured" and told I didn't need to keep up with the panos.

Looking back, that was a mistake - I should have pushed for an annual pano. Based on the pano I had at my dentist a couple of weeks ago, it's very likely back - but in two locations. I still don't regret having conservative surgery, but if the regrowth had been caught sooner/smaller it would have been easier to deal with.

Consulted with an oral surgeon already, now waiting to get the biopsies done and a confirmed diagnosis.

I've asked for genetic screening of the tumor - it appears that the majority of mandibular ameloblastomas are associated with the BRAF V600E mutation, and there are FDA approved drug treatments for some BRAF V600E initiated tumors: combined Dabrafenib-Tratmetinib. Unfortunately outside some very limited studies, nobody seems to be taking drug treatment approach. US studies have basically been 1-patient case studies. Biggest study I could find was 12 patients in Israel. Literally 100% of them had significant tumor shrinkage within 8 weeks. 10 of them had switched from a planned resection to jaw preservation surgery - and the other two were not far behind, likely to switch as well.

It seems to me that there really should be more effort in taking an oncology/drug approach to treating ameloblastomas, rather than an approach of pushing for radical surgery as a first line treatment.

- BRAF inhibitor: a novel therapy for ameloblastoma in mandible https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6328504/
- BRAF-targeted therapy for locally advanced ameloblastoma of the mandible: A potential neoadjuvant strategy. https://ascopubs.org/doi/abs/10.1200/JCO.2022.40.16_suppl.3149
- FDA grants accelerated approval to dabrafenib in combination with trametinib for unresectable or metastatic solid tumors with BRAF V600E mutation https://www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-accelerated-approval-dabrafenib-combination-trametinib-unresectable-or-metastatic-solid

I admit, the full resection scares me. Oral surgeon was already talking about removal of nearly the entire left side of my mandible, fibular flap, etc.

Hey, thank you so much for sharing your story and insights I do appreciate it so much!! I’ve currently had the jaw reconstruction and a few other surgeries, recently they took my hip bone out and put it in my jaw as my previous surgeries had failed. I can also confirm insurance always tries to be sneaky😭

I had a 1”x 3” section of lower right mandible removed in 2021 along with a 1”x3” benign unicycistic ameloblastoma cyst, and 3 teeth. The replacement is a 5 tooth permanent bridge with a small space below it for cleaning and future access. My biggest problem was with payment. By the time you get to “benign.” your only thought is to get it out as soon as possible! I had Medicare Advantage PPO Dental Insurance and a Physicians Mutual dental insurance policy. The approximate cost was $10,000 to take it out and $10,000 to fill the hole. Problem was that UHC said it was a dental issue as did PM. It took nearly 4 years of fighting with the insurance companies to prove to them that their own rules define unicycistic ameloblastoma as a medical condition. Of course, if you want definitive answers and course of treatment, payment is due upon receipt of treatment. In the end, UHC came through with $2000 by way of their appeal process.