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caw (@caw)

Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: 1 day ago | Replies (127)

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Hey guys, I am an 18 year old girl who was diagnosed with ameloblastoma in my right mandible in November 2021. I am currently heading to an appointment on Thursday for a final decision on if they will do the jaw reconstruction or if they will simply take the tumour out and put in a metal plate to see if it comes back. I am currently feeling very overwhelmed and scared and I just wanted to ask how any of you guys coped. I feel as though none of my family or friends can understand but i appreciate them trying. Thank you so much

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Replies to "Hey guys, I am an 18 year old girl who was diagnosed with ameloblastoma in my..."

I too recently had my left mandible replaced with fibula bone and free flap reconstruction up at Mayo. Yes, it was scary and not the most pleasant experience of life. However, two years out and I am doing fine. Please, if you have questions or concerns don't hesitate to ask me or anyone else in this group for information.
Believe it or not, my biggest concern was if I would ever be able to walk normal again after removal of the segment of leg bone. Turns out that was a non-issue.
Anyway, I am sorry you have to go through a battle like this at such a young age. As Winston Churchill would often say, "Courage". Later when your friends whine about a cell phone or pizza not having enough cheese, you can just smile at the triviality knowing what you have been through is a mountain most would not climb. Good luck.

Hi @anbar04, I'd like to add my belated welcome. I love the support you've found with @hrhwilliam and @caw. Being diagnosed with cancer is tough, but at 18 years old really sucks.

If you would like to connect with other young adults dealing with cancer, you can also join this support group on Connect:
– Adolescent & Young Adult (AYA) Cancer support group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

There is also a monthly Zoom support group you might be interested in:
– YA, Me Too: Young Adult Cancer Support Group Meeting https://connect.mayoclinic.org/event/aya-adolescents-and-young-adults-support-group-3/
The group meets the first Thursday of the month and next meeting is April 6.

What was the decision that you made with your team? Will they do the jaw reconstruction or take the tumour out and put in a metal plate? How are you feeling?

Hey @anbar04 ! William mentioned you, so I thought I would reach out.

I hope you make the right decision for you. I totally feel you on the overwhelmed and scared – I'm right there with you and I'm nearly 50. There are no local (or even local-ish) discussion or support groups near me, which is how I ended up here!

When I had my first ameloblastoma in 2007, I pushed for and got the less radical surgery, along with a bone graft from further back in my jaw and dental implants. I then did pano X-rays for 5 years and was pronounced cured. The ameloblastoma has probably recurred (biopsy scheduled for May 30th to confirm). I don't regret going with the more conservative surgery, I only regret that I didn't keep having an annual pano X-ray to catch the recurrence earlier.

In the meantime, there is some really useful looking research on targeted drugs (see above for details)

That said, as far as I can tell there isn't anyone routinely administering a drug treatment for ameloblastomas yet.