Diagnosed with Ameloblastoma

Posted by caw @caw, Nov 9, 2021

Reaching out to anyone else wanting to connect with others diagnosed with Ameloblastoma and the journey involved.

My background, diagnosed February 2021, segmental mandibulectomy, fibula free flap March 2021.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Hey, @anbar04 - just checking in on you! I hope the recovery is going well and you're doing stairs again!

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@anbar04

Thank you everyone for all the support i appreciate it so much it’d genuinely gotten me through everything much smoother! It’s been a week and I am currently onto a soft diet and I can walk around a bit we’re tackling stairs on Monday but I think the first few days were hard and I didn’t expect the jaw to be so stiff!

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Hooray! So happy to hear you are on the mend and you are getting up and about. Fun stuff eh? Hope it all works out well for you.

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@tomschwerdt

Hey, @anbar04 - I hope things went well with your surgery last Saturday.

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Thank you everyone for all the support i appreciate it so much it’d genuinely gotten me through everything much smoother! It’s been a week and I am currently onto a soft diet and I can walk around a bit we’re tackling stairs on Monday but I think the first few days were hard and I didn’t expect the jaw to be so stiff!

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Hey, @anbar04 - I hope things went well with your surgery last Saturday.

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@anbar04

Thank you guys for all the messages! However, my surgery today got cancelled due to an emergency in the operation before mine I went to the hospital and I was there for 4 hours before being sent home. They are rescheduling for Saturday so it’s a massive waiting game for now

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Well, once you have it - please don't feel obligated to post here immediately unless you really want to. We'd all like to know, but your recovery comes first.

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@anbar04

Thank you guys for all the messages! However, my surgery today got cancelled due to an emergency in the operation before mine I went to the hospital and I was there for 4 hours before being sent home. They are rescheduling for Saturday so it’s a massive waiting game for now

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Nothing like living on pins and needles for another five days. Hugs kiddo. You will be alright.

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Thank you guys for all the messages! However, my surgery today got cancelled due to an emergency in the operation before mine I went to the hospital and I was there for 4 hours before being sent home. They are rescheduling for Saturday so it’s a massive waiting game for now

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@anbar04 I hope that your surgery today went well.

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@tomschwerdt

Best of luck with it @anbar04 !

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Hi @anbar04 ... How's your situation now... Please share your experience when you recover from the surgery... Really appreciate if you can share

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@city

Thanks a lot for sharing... I really appreciate it!
We first knew about it a month ago .. I have zero knowledge about it... This group really help me to understand what Ameloblastoma is all about and also about the jaw resection.

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Hello @city. Ameloblastoma is rare indeed. A tumor which cannot spread to other parts of the body yet can return to the original site is not medically considered a cancer. So the good news is that Chemo is not necessary and would serve no purpose. But it is still a tumor which grows and must be removed to stop it. And what caused it in the first place? I wish someone would figure that one out. In the Head and Neck Cancer group we address Ameloblastoma because the location and surgeries are often related.
There are others here who have gone through Ameloblastoma care including @anbar04 who is not much older than your daughter and I believe should be in surgery recovery currently. Others may chime in soon as well.
Research (on respected sites) as much as possible so you can be the best advocate for care. Don't hesitate to ask the doctors and nurses any and all questions. In the meantime, let's keep the conversation going when you have a chance.

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