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caw (@caw)

Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: 4 days ago | Replies (143)

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@tomschwerdt

Hi, Colleen! Thanks for checking in.

Pathology confirmed ameloblastoma for both tumors, was iffy on the subtyping but said probably unicystic. That wasn't definitive enough for my oral surgeon to go with conservative surgery.

Therefore, I've gotten a referral to MD Anderson to pursue targeted therapy and I'm working through their process. Nominal first appointment isn't til mid-September, unfortunately. Every step seems to take so darn long.

It feels pretty lonely having such a rare disorder - this is the only place I've been able to communicate with others who also had/have ameloblastoma. The loneliness is compounded by needing to take my own road for targeted treatment instead of the conventional approach of radical surgery.

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Replies to "Hi, Colleen! Thanks for checking in. Pathology confirmed ameloblastoma for both tumors, was iffy on the..."

@tomschwerdt
Having Ameloblastoma comes with a multitude of complex emotions, and I know it can feel lonely but you are not alone and always remember you will not go through any situation in which you cannot handle. I wish you luck for the targeted therapy, remember to look after both your physical and mental health throughout this process and I know you’ll come out of this much better in all forms!