Diagnosed with Ameloblastoma

Posted by caw @caw, Nov 9, 2021

Reaching out to anyone else wanting to connect with others diagnosed with Ameloblastoma and the journey involved.

My background, diagnosed February 2021, segmental mandibulectomy, fibula free flap March 2021.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

@anbar04

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?

Jump to this post

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.

REPLY
@anbar04

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?

Jump to this post

@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.

REPLY
@tomschwerdt

@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.

Jump to this post

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!

REPLY

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...

REPLY

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!

REPLY
@hrhwilliam

Hi @honeybear3. I myself have not had Ameloblastoma, only the similar surgery that others have had such as @anbar04.
As I understand this tumor, it likes to grow primarily on the mandible or lower jaw. It isn’t considered cancer as it doesn’t spread but it is still an uncontrollable growth.
It is also rather rare. Most physicians have never seen it nor know anything about it. That said, it would be best to seek out those who have experience with it, if indeed this is what it is. You may have to wait for results. Also it does not seem to be a fast growing tumor as many live with it for years although it can become uncomfortable and disfiguring.
Take a look at some good medical websites including Mayo Clinic.org . Learn what you can and then seek the best to help you. And when it’s under control, hug your dentist.

Jump to this post

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.

REPLY
@charlesvalley

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.

Jump to this post

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!

REPLY
@mjarmbruster

Greetings!

I've also been recently diagnosed with an ameloblastoma of the right front mandible and am SO glad to have found y'all! Although my journey is just beginning, the information provided has been quite elightening. It really does help to know what the next steps could be. Thank you all for sharing!

My tumor was discovered initially in January of this year (2024) by a dental panoramic xray. Dentist referred me to a local oral surgeon who, after performing his own xrays and CT scans, came to the initial diagnosis of Keratocystic Odonotgenic Tumor. Conservative surgery was on 2/14/24. Pathologist returned a final diagnosis of ameloblastoma, follicular type.

I have read a good number of your posts and just had one question. For those of you who experienced recurring ameloblastoma, how long after the original surgery did that occur?

Jump to this post

Hi did you have any physical symptoms? Or did you proceed with surgery based on the findings alone? Thank you.

REPLY
@charlesvalley

Hi did you have any physical symptoms? Or did you proceed with surgery based on the findings alone? Thank you.

Jump to this post

My physical symptoms included noticeable swelling on the jaw, prolonged tiredness, fainting and just pain toward the end of the growth. I decided to go for the surgery because I wanted it to be gone completely and have healthy bone to live with.

REPLY
@anbar04

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!

Jump to this post

Thank you! I've read through many pages here and your journey as well as everyone else's here has been indeed unlike a lot! I appreciate your feedback. I'm trying to not get too emotional and take it day by day. I will go on Monday for a specialist and see what he recommends

REPLY
Please sign in or register to post a reply.