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.

@tomschwerdt

Both times I had a biopsy and a pathology report before any more significant treatment.

First round (~2007) I did "conservative" surgery which included two teeth and a big chunk of jawbone + autologous bone transplant + dental implants, which got me though to 2023 - this time I've pushed hard to pursue chemotherapy because my ameloblastoma has a the BRAF V600E mutation - and there is a recently FDA approved oral (pills) chemotherapy for other cancers with that specific mutation.

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I’m going to push for a biopsy prior to any other procedures. Thank you for connecting with me.

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@zigvero24

So, X-ray showed the ‘cyst’. We went to see a maxillofacial surgeon locally and he was concerned about removing it in the office so he referred us to the another surgeon at University of Florida Jacksonville, where they determined that they would do an outpatient procedure to remove it, as well as 2 molars, and do a biopsy at that time. I’m concerned that they should do the biopsy BEFORE this procedure. Your thoughts are appreciated.

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Both times I had a biopsy and a pathology report before any more significant treatment.

First round (~2007) I did "conservative" surgery which included two teeth and a big chunk of jawbone + autologous bone transplant + dental implants, which got me though to 2023 - this time I've pushed hard to pursue chemotherapy because my ameloblastoma has a the BRAF V600E mutation - and there is a recently FDA approved oral (pills) chemotherapy for other cancers with that specific mutation.

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@anbar04

Hey, the most common procedure is to do the biopsy before removing it however they may want to do it due to your sons history of cancer however maybe if you menthol in your next appointment that you’d prefer knowing before anything is removed because it’s an intense process to be thrown in at once. Hope you guys are doing well in this time.

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Thank you. That’s my gut feeling as well. We just recently found there was a problem, and only saw the surgeon on Wednesday. I knew I had an issue with their recommendation but not until I saw all of your posts that I could put it all together. Thank you.

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@zigvero24

That’s my concern actually. As I replied to @tschwerdt, they want to do the procedure and remove 2 molars and do a biopsy at that time.

Jump to this post

Hey, the most common procedure is to do the biopsy before removing it however they may want to do it due to your sons history of cancer however maybe if you menthol in your next appointment that you’d prefer knowing before anything is removed because it’s an intense process to be thrown in at once. Hope you guys are doing well in this time.

REPLY
@anbar04

Hey, hope you’re well. Like mentioned above it can just be a cyst that will need to be removed however most surgeons will do a biopsy to ensure there’s nothing else going on. Ameloblastoma has no known causes such as genetics or lifestyle. We’ll all be here for you regardless of the outcome and wishing your son health and healing.

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That’s my concern actually. As I replied to @tschwerdt, they want to do the procedure and remove 2 molars and do a biopsy at that time.

REPLY
@anbar04

Hey, hope you’re well. Like mentioned above it can just be a cyst that will need to be removed however most surgeons will do a biopsy to ensure there’s nothing else going on. Ameloblastoma has no known causes such as genetics or lifestyle. We’ll all be here for you regardless of the outcome and wishing your son health and healing.

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Can you see my reply to @tschwerdt?

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@tomschwerdt

Hi, @zigvero24 !

Has there been a biopsy to verify the diagnosis of a "cyst"? In my experience, it takes quite awhile (and both times a transfer from the regular pathologist to a specialist pathologist, then more waiting) to get a definitive answer on ameloblastoma.

For me, the first step after dental X-ray discovery and oral surgeon consult was to have a biopsy taken. Both times.

Jump to this post

So, X-ray showed the ‘cyst’. We went to see a maxillofacial surgeon locally and he was concerned about removing it in the office so he referred us to the another surgeon at University of Florida Jacksonville, where they determined that they would do an outpatient procedure to remove it, as well as 2 molars, and do a biopsy at that time. I’m concerned that they should do the biopsy BEFORE this procedure. Your thoughts are appreciated.

REPLY

Hey, hope you’re well. Like mentioned above it can just be a cyst that will need to be removed however most surgeons will do a biopsy to ensure there’s nothing else going on. Ameloblastoma has no known causes such as genetics or lifestyle. We’ll all be here for you regardless of the outcome and wishing your son health and healing.

REPLY
@zigvero24

I (accidentally?) came across your website. My 45 y/o son was diagnosed with a brain tumor in 1985, treated with chemo/radiation/chemo. During a routine dental X-ray, a “cyst” was discovered below his back molars in his right lower jaw. Saw docs yesterday at UF Health Jacksonville and surgery to remove the cyst will be scheduled soon. He will most likely lose the teeth. My concern is the diagnosis of ameloblastoma with his history of cancer.

Jump to this post

Hi, @zigvero24 !

Has there been a biopsy to verify the diagnosis of a "cyst"? In my experience, it takes quite awhile (and both times a transfer from the regular pathologist to a specialist pathologist, then more waiting) to get a definitive answer on ameloblastoma.

For me, the first step after dental X-ray discovery and oral surgeon consult was to have a biopsy taken. Both times.

REPLY
@zigvero24

I (accidentally?) came across your website. My 45 y/o son was diagnosed with a brain tumor in 1985, treated with chemo/radiation/chemo. During a routine dental X-ray, a “cyst” was discovered below his back molars in his right lower jaw. Saw docs yesterday at UF Health Jacksonville and surgery to remove the cyst will be scheduled soon. He will most likely lose the teeth. My concern is the diagnosis of ameloblastoma with his history of cancer.

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Hi @zigvero24 and welcome to the head and neck group. We are mostly patients either current or previous and collectively one of us may be able to help you navigate the next few weeks.
A cyst can sometimes just be a cyst caused by an infection. However, Ameloblastoma for some reason loves the teeth/ bone area, rare as they might be.
Can you let me or us know what the results from surgery will be? Hopefully it is nothing more than a cyst but if not, we are here for you.
Courage.

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