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Hi everyone. New here. I have a few questions. For most of you, did you get surgery or work done after discovering physically something, or via pain alone or via x ray?
I went in for a molar pain when i chew hard food. Thought it was a cavity. Dentist did x ray and panoramic x ray and found radiolucency. He said that it looked circular, soap shaped and was i think causing bone to become less dense or noticeable (didnt really understand). He wrote a referral to a specialist and the paper said: "Please evaluate #19 radiolucency, PDL not included, #19 RTC being treated, ameloblastoma?" The specialist i'll see him on Monday. He will likely do x ray and if he cant determine what it is, may ask for biopsy.
For those who have had a biopsy around jaw how is that? Granted it may be something else who knows.
I googled ameloblastoma and am pretty nervous. Can anyone tell me..is this usually really aggressive like once you have it it moves fast, or is it slow? I hadn't gone to the dentist in three years and to find this is scary. Lots of things running in my mind. Part of me already thinking of worse case scenarios..such as if they want to do biopsy i may ask if we can do routine x ray to monitor growth and then if it grows to do the biopsy. I really dont want to rush unless this thing grows out of hand!
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@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.