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.

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therock | @therock | 8 hours ago

They, at Mayo, are the best. From the surgeons to the surgical floor and nurses. There is a place right across the street from the hospital we stayed in and was very convenient for my wife. I’m in Colorado and fly back once a year for follow up.

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William Olsen, Volunteer Mentor | @hrhwilliam | 6 hours ago
In reply to @la93 "@hrhwilliam I can see what a great support you are to everyone on this forum, so..." + (show)
@la93

@hrhwilliam I can see what a great support you are to everyone on this forum, so thank you for your response. May lean into this group as I get closer to treatment. It's a lot, as you know! Part of a club we never asked to be in... I plan to reach out to Mayo Clinic, Dr. Arce. I only worry about the distance to get to my care team if there's any complications later, since I'm in NY. PS I am terrified of this feeding tube. To me that's the most frightening part now. Maybe because that was only just mentioned on my last visit.

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The feeding tube is a bit annoying I agree, but nothing you can't handle. I wrapped the outside piece over my ear when showering or not in use. Plan for one hour meals and you will take ground up meds through the tube as well. I was 65 when I had this done. Piece of cake. Well, perhaps an entire cake.
For me I didn't like the CAM boot as it was clumsy and often banging into things.
You will have a tracheostomy which should be healing when you leave the hospital and you have to be careful taking a shower as to not get soap in there.
Dr.'s Arce and Ettinger were my team as well. You will never meet nicer surgeons.
My wife has reminded me she had to peal me off the ceiling a couple of times whilst dealing with the feeding tube. Likely so. But I had mine for three weeks and we live five hours from Mayo Clinic so lots of driving.

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Tom Schwerdt | @tomschwerdt | 2 hours ago
In reply to @la93 "@therock. thank you for your response. I am reaching out to Dr. Arce and the Mayo..." + (show)
@la93

@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.

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