← Return to Diagnosed with Ameloblastoma

caw (@caw)

Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: 2 days ago | Replies (127)

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That sounds so annoying, I’m so sorry it’s come back but on the bright side there are so many routes for treatment, what are they planning to do after identification?

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Replies to "That sounds so annoying, I’m so sorry it’s come back but on the bright side there..."

@anbar04 Thank you so much for your support! Best of luck with your surgery!

If my ameloblastoma is unicystic, my current oral surgeon is onboard with conservative (jaw preservation) surgery. If not, he's very likely going to want the radical resection + fibular flap which really freaks me out.

That likely means I'll be looking for genetic screening for the BRAF V600E mutation in the tumor, which is most likely the cause of the ameloblastoma (most mandibular ameloblastomas have that mutation.) If that's confirmed, I'll look for a doctor willing to try targeted treatment – likely an oncologist since several cancers with BRAF V600E have an FDA approved drug treatment targeted at that mutation.

Fortunately, I should have some time. I didn't have any bleeding from the ameloblastoma, and the biopsy surgery significantly reduced the pressure from inside my jaw.

The big MD Anderson cancer center in Houston is only about a 3 hour drive. My PCP is onboard with a second opinion/referral to MD Anderson.

All that said, I'm not locked into either oncologist or MD Anderson – those just look like the most likely routes.