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Head & Neck Cancer | Last Active: 19 hours ago | Replies (276)
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Finally got the biopsy results from the second surgery on April 7th: recurrent ameloblastoma. Not at all a surprise. Since the oral surgeon "removed" it during the surgery, I had assumed that I was good to go, at least until it comes back. But, when the oral surgeon called to discuss the biopsy, he also sent a referral to what he described as a head & neck oncologist here in the Nashville area. If the tumor has been removed, why would I need to see an oncologist for follow-up?! Anyway, the oncologist wants to do the radical surgery option. I'm not ready for that yet. @tomschwerdt - do you know if MD Anderson is also using the targeted thereapy as an adjuvant treatment?
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@erikm went to MDA with a similar situation. Tumor was already removed by a local oral surgeon. MDA evaluated and were not willing to use targeted therapy at that time. Not sure which doctors were on his evaluation team or other details.
Personally, I think it makes a huge amount of sense to follow up a conservative surgery with the targeted chemotherapy - presuming there is one. Conservative surgery will leave a few cells. About 80% of mandibular ameloblastomas have the BRAF V600E mutation. Wipe out those cells with targeted therapy.
My tumor has the BRAF V600E mutation, so I am on the targeted therapy. I haven't investigated whether the mutations of the other 20% have targeted therapies again.
I'll mention again - it took about 15 years for my ameloblastoma to come back to a meaningful size after conservative surgery. That's when I went to MDA, was clear that radical surgery was not an option for me, and then they supported using the targeted therapy (after confirming the genetics) - for an actively growing tumor.
I'll mention this truism again: Surgeons want to do surgery. Surgery is the "standard of care" approach to ameloblastoma.
My current oncologist at MDA is Neal Akhave:
https://faculty.mdanderson.org/profiles/neal_akhave.html
This is typically a very slow growing tumor. If it was removed, I wouldn't be in a rush to get radical surgery unless ongoing monitoring showed something concerning going on.