1. < Head & Neck Cancer

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.

Tom Schwerdt | @tomschwerdt | 15 hours ago

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
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Tom Schwerdt | @tomschwerdt | Apr 7 9:32am

My real concern about treating a "cyst" before biopsy is - what if it isn't a cyst? If it's ameloblastoma, they're going to want to go back in and do even more extensive surgery - something I personally wasn't willing to do until I exhausted other options.

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Tom Schwerdt | @tomschwerdt | Apr 6 8:46pm
In reply to @zigvero24 "I’m going to push for a biopsy prior to any other procedures. Thank you for connecting..." + (show)
@zigvero24

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

Jump to this post

Keep us in the loop - hope it works out for you, and let us know how we can help.

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zigvero24 | @zigvero24 | Apr 6 5:37pm
In reply to @tomschwerdt "Both times I had a biopsy and a pathology report before any more significant treatment. First..." + (show)
@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.

Jump to this post

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

REPLY
1 reply
Tom Schwerdt | @tomschwerdt | Apr 6 4:38pm
In reply to @zigvero24 "So, X-ray showed the ‘cyst’. We went to see a maxillofacial surgeon locally and he was..." + (show)
@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.

Jump to this post

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.

REPLY
1 reply
zigvero24 | @zigvero24 | Apr 6 1:43pm
In reply to @anbar04 "Hey, the most common procedure is to do the biopsy before removing it however they may..." + (show)
@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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anbar04 | @anbar04 | Apr 6 1:35pm
In reply to @zigvero24 "That’s my concern actually. As I replied to @tschwerdt, they want to do the procedure and..." + (show)
@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
1 reply
zigvero24 | @zigvero24 | Apr 6 1:28pm
In reply to @anbar04 "Hey, hope you’re well. Like mentioned above it can just be a cyst that will need..." + (show)
@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.

Jump to this post

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
1 reply
zigvero24 | @zigvero24 | Apr 6 1:26pm
In reply to @anbar04 "Hey, hope you’re well. Like mentioned above it can just be a cyst that will need..." + (show)
@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.

Jump to this post

Can you see my reply to @tschwerdt?

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zigvero24 | @zigvero24 | Apr 6 1:25pm
In reply to @tomschwerdt "Hi, @zigvero24 ! Has there been a biopsy to verify the diagnosis of a "cyst"? In..." + (show)
@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
1 reply
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