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← Return to Diagnosed with Ameloblastoma
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@tomschwerdt Thank you so much for sharing the information and the study! I’m going to forward it to my son’s oral surgeon to see what he thinks and whether it might lead to a referral for further treatment options.
We had a post-op visit this past Friday, and they informed us that he has a desmoplastic ameloblastoma. They explained that it’s a more aggressive type, and they’ll be monitoring him every 4-6 weeks for any signs of recurrence. They said there's about a 50/50 chance it could come back. If it does, they may need to do a small resection, possibly taking bone from his leg to reconstruct his jaw.
I also want to express my deep appreciation to everyone who has shared their experiences and information during this difficult time. Your support has been incredibly valuable and comforting as we navigate this journey.
Thank you all again.
Replies to "@tomschwerdt Thank you so much for sharing the information and the study! I’m going to forward..."
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Wow! Desmoplastic ameloblastoma is a rare variant of an already very, very rare tumor! I was diagnosed with the unicystic variant both times.
If (when) it comes back, I highly recommend getting genetic testing of the tumor to see if there is targeted therapy available. I'm not telling you to do the targeted therapy, just that it's important to know whether it is a viable option. After that you, your son and your doctors need to find the best choices for your (his) particular situation.
My personal concerns about resection are largely about long-term or permanent loss of function both from a structural perspective and from a functionality perspective (permanent nerve damage).