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← Return to Diagnosed with Ameloblastoma
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Head & Neck Cancer | Last Active: Sep 10 7:47am | Replies (287)
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@therock. thank you for your response. I am reaching out to Dr. Arce and the Mayo team for a consultation. Assuming that Mayo can recommend a place for you to stay. I'd be coming from NY. I worry about needing to get back to Minnesota in terms of distance and time if I needed them. But aside from that, willing to travel to get the best care. I do worry that "surgeons do surgery" and will they take a conservative approach if possible? On the other hand, who wants to do a surgery a second time, so maybe the radical surgery is better now.... I'm 65 but active and in great health, still working and travel quite a bit for my job. Hard to know what to do.
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My ameloblastoma is mandibular instead of maxillary, but conservative surgery bought me 15+ years of full functionality with my original jawbone.
Ameloblastomas usually grow very slowly - and 15+ years later when it came back I have (and chose) the option of genetically targeted chemotherapy: 5 pills a day. Chemo is very slowly shrinking my ameloblastoma. I'm much more comfortable with the chemo side effects than radical surgery.
Everyone has to make their own choice.
Important note: Mandibular ameloblastomas (including mine) mostly have the BRAF V600E mutation. Maxillary ameloblastomas generally have different mutations. When I did my deep dive into the literature, I focused on mandibular because that's what I have. LMK if you want help looking into the mutations behind maxillary ameloblastomas.