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Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: Oct 28 6:03pm | Replies (227)

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@tomschwerdt

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).

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Replies to "Wow! Desmoplastic ameloblastoma is a rare variant of an already very, very rare tumor! I was..."

@tomschwerdt again for all the insight you've provided. It definitely helps us feel a little more in control of of uncontrollable situation, as far as knowing what the options are and hearing everyone's experiences.

The doctor said he thinks there is a 50/50 chance of reoccurrence. I sent a message to see what his doctor thinks about genetic testing and other treatment options.