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caw (@caw)

Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: 2 days ago | Replies (126)

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@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.

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Replies to "@anbar04 Thank you so much for your support! Best of luck with your surgery! If my..."

Although I have not been through the big surgery yet, I will say it’s normal to be scared it’s such a daunting process I find myself counting down the days when my mind is free, but what keeps me going is knowing that I’m in the best hands, I have an amazing support system and this will teach me so much about myself and it’s reassuring to know this is the most effective cause of treatment as well. I was not able to qualify for the BRAF genetic screening but hopefully if that’s the option you are most happy about that you are able to qualify! You’ve got this, there’s not hardship presented to you that does not come with ease.

Hey Tom, if it comes to the free flap resection I can walk you through any concerns you might have. It’s not fun but you will be up and around in no time.