Diagnosed /w Ameloblastoma. Young Adult

Posted by meadowj @meadowj, Feb 3 7:55am

It originally started as a benign tumor located near my impacted Wisdom teeth, which were promptly worked upon and 'taken care of'. Afterward, they looked into it and monitored me to see if there was any recurrence. Only to confirm with a cancer institute that this was Ameloblastoma and that I would be receiving a major surgery within this year. I feel scared and numb. I am 24yo, female. I'm afraid of so much going wrong. I want to know if anyone else is experiencing this too or has so I can feel less lonely.

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@meadowj

Thank you so much to everyone steadily replying to me. I joined this Monday, so this website is quite new to me. But I am feeling better about the current status of what's happening. There was some conversation about a 'fibula-free flap' if it comes to that, will this effect me for exercising or even jobs that need me to stand constantly? And since its the jaw, could I still work at the job I work at now? It's very talk-oriented. Talking with my surgeon will help, but any answers or advice is extremely appreciated. Bless you all.

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Fibula Free Flap, my favorite! Been there, done that. Your worries about standing, walking, exercising were exactly my thoughts as well four years ago. I was back on my feet within a few weeks and walking without difficulty. Standing on one leg is still nearly impossible. On the other hand, my engineering job at the time had me on my feet nine hours per day and walking roughly five miles per day. Like you I worried but found it was not much of an issue.
You likely will have some odd nerve sensations for a year or two in your leg and foot. You also end up with a really cool scar, about 100+ stitches which probably should have a zipper tab tattooed on one end just for laughs. The jaw and mouth will also have nerve issues for a while. For me, I have had issues with my prosthetic teeth rubbing on my ever growing gum tissue. No other issues.
Make sure, and I can't stress this enough, make sure the team that does the Fibula Free Flap surgery has many under their belt, not reading it from a text book. You must ask them and the number hopefully is greater than fifty. This is a relatively newer surgery where just four years ago was done only in a handful of clinics in the US and two in Europe. Mayo, Rochester has trained teams in this procedure from around the world. Perhaps you might consider having this done either at Mayo or a clinic they have worked closely with. It is your life and your body and we hope it lasts a long-long time.
When and where is this scheduled (if you wish to share)?

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If your job is very talk oriented, I would talk to you surgeon about if he/she thinks a swallowing/speech therapist may be needed. God Bless and good luck with your journey.

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Thank you so much to everyone steadily replying to me. I joined this Monday, so this website is quite new to me. But I am feeling better about the current status of what's happening. There was some conversation about a 'fibula-free flap' if it comes to that, will this effect me for exercising or even jobs that need me to stand constantly? And since its the jaw, could I still work at the job I work at now? It's very talk-oriented. Talking with my surgeon will help, but any answers or advice is extremely appreciated. Bless you all.

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@davehutsell

I love William’s comment. “This time next year, you will have a wonderful story to tell.”
Praying you find God’s peace in this trial.

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You ARE in the right place! This platform is a Godsend. My husband had a very painful cancer last year, which he is now on the other side of and feeling great.
I would wholeheartedly encourage you to ask questions and get a lot of advise from these amazing, caring cancer survivors. Good luck to you. You’ll be great💕

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I love William’s comment. “This time next year, you will have a wonderful story to tell.”
Praying you find God’s peace in this trial.

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Hi @meadowj You found the right group. Welcome. There are people here who have also had this rare tumor known as Ameloblastoma. And I know of one who is younger than you who went down a very similar path and is doing well.
Give this forum a little time and others will pipe in. In the meantime, ensure your "cancer institute" has experience specifically with Ameloblastoma, and also with reconstruction if necessary. This is no time for learning or trying, it is do or not do. There are facilities world wide with experience and success in this situation, so please don't hesitate to ask. You should have the best.
If I don't see responses from our Amelo people in the next couple of days, I will prompt them to check in with you. In the meantime just enter Ameloblastoma in the search box at the top of the page and you will find discussions about this. As for me, I didn't have the tumor but I did have the rebuild surgery that often is used in severe cases of Ameloblastoma.
I understand scared and numb. Particularly at your age, nothing bad is supposed to happen. But here you are. This time next year you will have a great story to tell. And as we like to say, scars make better stories than tattoos. For now, brakes on full from a normal life. Better days ahead. Above all: Courage!

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