Diagnosed with Ameloblastoma

Hey, hope you’re doing well otherwise. Ameloblastoma is weird because it may grow aggressively internally but you can never really see it externally it doesn’t really get as swollen as the Google images😭in terms of my biopsy on the jaw it felt like a minor operation with slight pain and then as the tumour grew there was the expected pain and tiredness. Just take each day as it comes and make sure you make the choice that benefits you the most whether it’s surgically or medicinally!

Hi, any idea on how slow this thing can grow? I know from the small research i've done it can grow aggressively fast, but i wonder how slow.

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!

Okay, now I get to picture @anbar04 as a barrister wearing a powdered horsehair wig to address the Court... 😀

I hope you don't mind me being a bit silly there...

Thank you! My treatment plan is currently checking on the jaw every few months to ensure the plate doesn’t move as if it moves we have to start all over again which is the worst possible outcome so we keep scanning and praying for positivity! As I live in London I’ll be going to a university called Brunel it’s only 30 minutes from me so it’s not to bad hopefully I can pursue my law degree with the best health!

Honestly teeth grinding is more common than I thought and it may be unpleasant but at least the treatment is a breeze compared to what you’ve been through! We’ve all got this that’s the one thing I know!

@anbar04 Thank you so much for your well wishes! I'm glad you can get on with your life and head off to University!

If you don't mind sharing, whereabouts are you headed to University? I went to University of Delaware.

Are there some more treatments planned, or is it just recovery and physical therapy type stuff for you? That rejection had to be really rough for you. I can't even imagine.

I don't think I mentioned it here, but apparently I started grinding my teeth hard due to the stress during the timeframe between when the dentist found the recurrence, the months for confirmation and the months for getting referred to MD Anderson and starting actual treatment.

Due to the grinding, I cracked three teeth, scattered around - both sides upper plus lower left (above the tumors). Had my first crown on a natural tooth earlier this week - temporary, of course while the permanent one is being made. Not fun, but a lot better than jaw surgery! They'll start on the upper left when I go back for the permanent on upper right in a couple of weeks. Not going to do the lower left until I have more confidence I'll actually keep the tooth - and it's also the only one which doesn't bug me at all.

I've been using a night guard since the cracked teeth were found.

It's always good to hear from you and am glad you are on the mend. Because you fought this battle with such courage, never giving up, university should be a breeze. Good on you as you will always be stronger than those around you. Time should heal all.

Hey, keeping on keeping on sounds good and the results for you also sounds good I’m so happy for you. For me I feel pretty good too the swelling has mostly gone and my energy levels have gone up since I joined the gym. I’m just preparing for university in 4 months! My consultant found that everything looks good I just am still struggling with some foods but I’m sure that’ll come in time especially since I only have a plate. How is everyone else?

Hey, folks! Just checking in since it's been a few weeks. I'm keeping on keeping on - interim bloodwork looked good, energy levels are reasonable, next imaging visit for me should be sometime in the second half of June.

Any updates from anyone? Also, specifically from @anbar04 and @zigvero24

New paper out on targeted treatment of mandibular ameloblastoma with the BRAF V600E mutation. It appears to be a more detailed version of the conference poster from 2022. I don't have access to the full paper yet, working on it.
https://academic.oup.com/jnci/article-abstract/116/4/539/7421919