Diagnosed with Ameloblastoma

@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.

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.

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!

Thanks for asking! My head felt fuzzy for a few hours, but that's the only noticeable effect so far.

This is a targeted chemo, not the classic "IV bag in the hospital" chemo. It will be 5 pills a day (2+1 in the morning 2 in the evening.) Judging by the published biological half life numbers (138 hrs), it will probably be about a week before I get chemo levels up to to the "steady state" level in my bloodstream.

Where did you choose to have your surgery? My son lives in Orlando, Florida and we are not finding surgeons or centers experienced with this. Some are willing to operate, but with ameloblastoma I don't think we need to be someone's first case. We are willing to travel if needed--and assume we will need to. Just trying to get options for him. Thanks.

I’m so sorry but I live in London and had my surgery in central London! Is there any way to research specialists, hopefully some of the other guys on here can help you to find a surgeon who can operate and I wish you and your son nothing but a smooth journey!

I can recommend two surgeons in Central Texas who have dealt with ameloblastomas - I have no information on treatment in Florida.

My original surgeon still practices in Temple, TX at the huge Baylor, Scott and White complex. He did want to do the more radical surgery on my first round (~2007) - but I opted for more conservative treatment.

My current oral surgeon in Austin did a fabulous job with the biopsy, and really knows ameloblastoma surgery. If I were going forward with surgery, I would be quite confident in him.

Let me know if you would like specifics.

I had surgery July ‘22 and was scheduled for Houston but the doctor had his feeling hurt by asking a question so I went to Mayo Clinic Rochester and they were excellent surgeons. I couldn’t be happier. Good luck

Thanks so much. Yes, Mayo in Rochester is on our list of places for a 2nd opinion. There is a Mayo in Jacksonville, Florida (north end of the state) but they don't seem to have team approach to amelo. surgery, as they appear to in MN. And that is what the radical surgery needs. I haven't yet found anywhere else in Florida that has an amelo. center. The pathologist in the oral surgeon's office initially said we would be referred to Univ of Florida (also in Jacksonville) if the surgery revealed something unusual. But after the oral surgery and pathology report diagnosed amelo, the pathologist said it was difficult to get an appointment at the U of Florida... I think there is no amelo specialist in Florida, but just want to be sure. Again, thank you for your information about Houston. Annie

Yes, I'd be interested in the names of the physicians you have seen. I'm also interested in the targeted gene therapy which I think is only currently available at MD Anderson, tho I see Stanford (California) did a small study around 2014 to identify the BRAF gene in mandibular amelo.

Thank you in advance for information about the specific surgeons you have seen.

Annie