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Diagnosed /w Ameloblastoma. Young Adult

Head & Neck Cancer | Last Active: Mar 18 11:49am | Replies (22)

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@tomschwerdt

@meadowj

Hey, feel free to stick around, ask questions, talk about options you've discussed with your healthcare providers (or whether you want to find a different one), etc. It's hard to find folks who are also dealing with ameloblastoma - even the National Organization for Rare Diseases (NORD) doesn't have much.

Keep in mind that this is usually a VERY slow growing cancer and it rarely metastasizes. You have some time to figure out a course of action - don't get rushed into surgery. Doctors are used to dealing with fast-growing cancers, so they often want to schedule surgery quickly.

Of course, staying calm and considered is easier said than done. I know that when I knew my ameloblastoma was back - I was darn anxious to get treatment going.

Realistically speaking - getting my ameloblastoma tumor scraped out (while keeping my jaw) bought me ~15 years before I had to deal with it again. It was big enough that I lost 2 teeth, almost 3. I'm not saying to ignore yours for that long, just trying to help you from feeling rushed. Taking 6 months, 1 year, 2 years before treatment - it's unlikely to be a problem. Though I would be sure to get an appropriate X-ray at least once a year.

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Replies to "@meadowj Hey, feel free to stick around, ask questions, talk about options you've discussed with your..."

Thank you again to everyone being responsive and checking in with me. I have received news that for my CT-Scan alone, with insurance included the payment of it would be immensely high. To provide an estimate, $1300-1400. I work a job, however, the pay I receive is overwhelmed by the costs of this treatment already. Is this a normal co-pay usually? If not, I will have to figure out what to do. Since my previous conversations, I feel slight pain on the lower left jaw-section. I am unsure if this is is a placebo effect, or if within this period of time it has escalated. I will respond back here again, any and all types of responses are welcome as usual and greatly appreciated. This affects my academic career as well so there is a lot for me to take in.

If there isn't much information for the financial side, I do not mind more advice in general. Bless you all.