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.

mjarmbruster | @mjarmbruster | Mar 22 7:37pm
In reply to @tomschwerdt "We have remineralization! What does that mean? Targeted chemo is working. The bone has grown back..." + (show)
@tomschwerdt

We have remineralization! What does that mean? Targeted chemo is working. The bone has grown back enough to be easily seen on today's CT scan!

Even more interesting - I found out that I am no longer the only MD Anderson patient having their ameloblastoma treated with the same drug regimen! No specifics beyond that. I should see if they allow me to offer my contact info to the other patient.

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@tomschwerdt , that's great news about the bone regrowth! You may be onto something there at MD Anderson!

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Mar 22 9:47pm
In reply to @tomschwerdt "We have remineralization! What does that mean? Targeted chemo is working. The bone has grown back..." + (show)
@tomschwerdt

We have remineralization! What does that mean? Targeted chemo is working. The bone has grown back enough to be easily seen on today's CT scan!

Even more interesting - I found out that I am no longer the only MD Anderson patient having their ameloblastoma treated with the same drug regimen! No specifics beyond that. I should see if they allow me to offer my contact info to the other patient.

Jump to this post

Great news Tom.

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Tom Schwerdt | @tomschwerdt | Mar 25 11:41am

As a more general followup - I've been feeling pretty good lately. Getting on the right dose of thyroid hormone for long enough made a big difference.

Since everything seems to be under control, I'll be on a 6 week schedule of MDA followups rather than the current 4 week schedule. One interim followup, then the big one is the next imaging in ~12 weeks.

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1 reply
mjarmbruster | @mjarmbruster | Mar 25 6:16pm
In reply to @tomschwerdt "As a more general followup - I've been feeling pretty good lately. Getting on the right..." + (show)
@tomschwerdt

As a more general followup - I've been feeling pretty good lately. Getting on the right dose of thyroid hormone for long enough made a big difference.

Since everything seems to be under control, I'll be on a 6 week schedule of MDA followups rather than the current 4 week schedule. One interim followup, then the big one is the next imaging in ~12 weeks.

Jump to this post

@tomschwerdt - So glad to hear that the thyroid has made such a difference! Will add you to my prayer list for good results at the 12 week imaging!

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zigvero24 | @zigvero24 | Apr 4 4:29pm

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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2 replies
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Apr 4 9:32pm
In reply to @zigvero24 "I (accidentally?) came across your website. My 45 y/o son was diagnosed with a brain tumor..." + (show)
@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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Tom Schwerdt | @tomschwerdt | Apr 5 6:20pm
In reply to @zigvero24 "I (accidentally?) came across your website. My 45 y/o son was diagnosed with a brain tumor..." + (show)
@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.

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1 reply
anbar04 | @anbar04 | Apr 5 6:33pm

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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2 replies
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.

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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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