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Meet others living with Head & Neck Cancer: Introduce yourself

Head & Neck Cancer | Last Active: Sep 21 5:27pm | Replies (538)
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@hrhwilliam

Hi Tom and welcome. You raise a valid point in that- how can a tumor not be considered cancer. After all, it is an abnormal growth. Because it does not metastasize? There are other cancers which seldom metastasize as well.
I digress. You will find others right here to converse with including a young lady of I believe eighteen in your situation but for the first and hopefully only time. She will have surgery next month and is rather understandably apprehensive. I myself had squamous cell carcinoma which resulted years later in a rebuild of my left mandible. So I have experience in that aspect. But give this a few days to simmer and we shall see who dives into the conversation.
Do you have any questions for this group or is there something specific you need? Feel free to ask.

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Replies to "Hi Tom and welcome. You raise a valid point in that- how can a tumor not..."
Tom Schwerdt | @tomschwerdt | May 11, 2023

Thanks, William!

Mostly I feel like I need feedback, and I certainly appreciate yours.

I've requested that my oral surgeon get preapproval for a genetic screening of the biopsy - from what I see in the literature, the vast majority of mandibular ameloblastomas have a particular BRAF mutation, V600E. There is already a drug regimen for various cancers with that mutation (Dabrafenib-Trametinib) - and a small trial of 12 people showed 100% success at significantly shrinking ameloblastomas with BRAF V600E. More details in the ameloblastoma discussion thread adjacent to this thread. https://connect.mayoclinic.org/discussion/ameloblastoma/?pg=4#comment-858354

I'm working on getting an oncology referral for a second opinion, requesting somewhere with a research program, cancer expertise and a wide variety of specialists. Since I'm in Texas, first stop is likely MD Anderson.

That said, if I need to go to Minnesota to get the right treatment, that's what will need to happen.

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