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.

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@tomschwerdt

On a personal note - last baseline test was completed yesterday, and I started my targeted chemo an hour ago. Followup testing in about a month.

For anyone who hasn't read through the thread: I am opting for a nonstandard approach. It wasn't easy, and has limited evidence to support it. The evidence which exists is really good, and it's using FDA approved drugs (approved for other tumors with the same mutation) - so for me the risk is worth it.

My approach will not be the right approach for most people. I hope it works out and helps pave the way to becoming an accepted option sometime in the future.

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How do you feel after the first round of chemo? Like you said everyone has different paths that work for them and I’m glad that this is the best thing for you as that is the most important thing at the end of the day and not anyone’s opinions!

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On a personal note - last baseline test was completed yesterday, and I started my targeted chemo an hour ago. Followup testing in about a month.

For anyone who hasn't read through the thread: I am opting for a nonstandard approach. It wasn't easy, and has limited evidence to support it. The evidence which exists is really good, and it's using FDA approved drugs (approved for other tumors with the same mutation) - so for me the risk is worth it.

My approach will not be the right approach for most people. I hope it works out and helps pave the way to becoming an accepted option sometime in the future.

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@honeybear3 - They're right. Ameloblastoma is rare, often found on a dental Xray and you need a specialist to diagnose (under my insurance you would need a referral) - typically this specialist is an oral surgeon who will do a biopsy of the lesion and send that off to a pathology lab to identify. Both times I've had this done (2007 and 2023) results took over a month and the original pathologist had to send the sample to a specialty pathologist who eventually confirmed ameloblastoma.

Ameloblastomas are often called "not cancer" because they grow relatively slowly and the chance of metastasizing (ie creating tumors in other areas of the body) is quite low - about 2% in the literature I read. Mandibular ameloblastoma (jawbone) is usually caused by a specific mutation in the cell which becomes the tumor: BRAF V600E. This same mutation is found in about half of melanomas (the worst category of skin cancer) and a smaller percentage of a variety of other tumors.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/braf-mutation-and-cancer

Standard care is surgery to remove the lesion and some amount of bone around it. My oral surgeon said he would remove a 1.0 cm margin from the edge of the visible lesion in all directions - "radical resection and fibular flap". Other surgeons may have other standards - you do want one who understands ameloblastomas.

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@anbar04

Just wanted to also add an update from me- almost 2 months post op and I feel really good. My mobility in the arm is getting back to normal and I am able to have harder foods now and my speech is normal as well, they said that my quick recovery is down to age as being relatively young has aided me massively in recovery. The only thing that I’m tackling most of the time is the fact that it’s still pretty swollen it’s slowly becoming smaller but you can tell my new bone is still trying to settle it’s way in!

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Anbar04 you have made my week with your news. So happy to hear you are on the mend and well.

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Just wanted to also add an update from me- almost 2 months post op and I feel really good. My mobility in the arm is getting back to normal and I am able to have harder foods now and my speech is normal as well, they said that my quick recovery is down to age as being relatively young has aided me massively in recovery. The only thing that I’m tackling most of the time is the fact that it’s still pretty swollen it’s slowly becoming smaller but you can tell my new bone is still trying to settle it’s way in!

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@honeybear3

Thank you for your reply! Best to you!

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As someone who has had ameloblastoma I didn’t have any apparent symptoms until last august in which my dad noticed the right side of my face was swollen and as the weeks went on it was getting more and more uncomfortable to eat so I went to the dentist and their scans showed a cyst which was taken for a biopsy a month later which turned out to be ameloblastoma! It was very sudden and unexpected and like @hrhwilliam said not many physicians were familiar with the tumour so I opted for a high quality specialist to review my scans which led to the surgery to remove the tumour with the jaw reconstruction. Ameloblastoma often invades the mandible and can be cystic or not- that being said if it is ameloblastoma just know that while the process may be scary you’ve got this and you will never be placed in a situation you cannot handle. We’re always for you!

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Thank you for your reply! Best to you!

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@honeybear3

William, I wonder what were your first symptoms of the ameloblastoma? Was in to dentist for a routine cleaning about a week ago but also went ahead and had them do a conebeam CT scan since I'd been having pressure-like pain on the top right back teeth for awhile. Turns out that there's a "lesion" of some sort in that area but haven't yet gotten back the rad report. Did you have symptoms like this at all and was a lesion seen on dental scan? Ameloblastoma keeps coming up when researching so was curious how it all started for you.

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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.

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@hrhwilliam

Hello @city, I’m sorry I was off line for most of the day and didn’t see this post right away.
I have no eating issues other than what cancer radiation left me with over twenty years ago. The mandible surgery and prosthetic teeth implant has actually improved my ability to chew.
I had to pass a swallow test before I was discharged from hospital but really have had no new issues with swallowing.
Speech was a bit distorted until my teeth were replaced. I also have a numb area on my lower lip and chin but have managed after a bit of practice to get the straw in my mouth from my root beer float on Saturdays which I enjoy so much.
14 years old is hard to imagine having to go through any surgery let alone one that will require healing in both the head and leg at the same time. It will be ok because she will heal.
I have a nifty long scar on my leg that when asked I just say “don’t swim with sharks.” The jaw scar blends into the folds of the neck so it’s not bad at all. The smile is a bit of a “pirate” smile and it’s good to be unique. As I say to all who ask, Courage! She will be fine.
Any questions as she goes on this journey please just ask.
When does this happen for her?

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William, I wonder what were your first symptoms of the ameloblastoma? Was in to dentist for a routine cleaning about a week ago but also went ahead and had them do a conebeam CT scan since I'd been having pressure-like pain on the top right back teeth for awhile. Turns out that there's a "lesion" of some sort in that area but haven't yet gotten back the rad report. Did you have symptoms like this at all and was a lesion seen on dental scan? Ameloblastoma keeps coming up when researching so was curious how it all started for you.

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Update: BRAF V600E is confirmed, and the medical oncologist is starting the process to start drug treatment.

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