1. < Head & Neck Cancer

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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Tom Schwerdt | @tomschwerdt | Mar 8 9:31am
In reply to @momofj "Hi. Does Mayo treat children for Ameloblastoma? My 8 y/o old son likely has ameloblastoma (pending..." + (show)
@momofj

Hi. Does Mayo treat children for Ameloblastoma? My 8 y/o old son likely has ameloblastoma (pending biopsy results). There is almost no research on children only case reviews. All major hospitals in So.California say nothing about it on websites. I likewise work at inpatient pediatric hospital and want a collaborative approach to manage this super rare condition. I'd prefer conservative approach for now considering skeletal immaturity. Where do I start?!

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As most here are aware, I chose conservative treatment the first time back in 2007 and have been satisfied with the outcome. I'm now on targeted chemotherapy, which has been slowly shrinking the recurrence. I suggest reading both this thread and the other ameloblastoma thread to get more details, then please ask questions!

Be prepared for it to take a long time to get a diagnosis from the biopsy after the original pathologist refers it to a specialty pathologist.

One caution: While doing your research on ameloblastoma and finding a top tier facility/doctors for treatment - I would not make any solid plans until you have a confirmed diagnosis from the biopsy. It is typically a very slow growing cancer and I am a proponent of evaluating all the options.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 18 11:49am
In reply to @momofj "Hi. Does Mayo treat children for Ameloblastoma? My 8 y/o old son likely has ameloblastoma (pending..." + (show)
@momofj

Hi. Does Mayo treat children for Ameloblastoma? My 8 y/o old son likely has ameloblastoma (pending biopsy results). There is almost no research on children only case reviews. All major hospitals in So.California say nothing about it on websites. I likewise work at inpatient pediatric hospital and want a collaborative approach to manage this super rare condition. I'd prefer conservative approach for now considering skeletal immaturity. Where do I start?!

Jump to this post

Hi @momofj, here is more information about requesting a second opinion from Mayo Clinic for your son. http://mayocl.in/1mtmR63

- Ameloblastoma care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/ameloblastoma/care-at-mayo-clinic/mac-20351281

Mayo Clinic Children's Center and pediatric specialized care is located at the Minnesota campus https://www.mayoclinic.org/departments-centers/childrens-center

Did the biopsy results confirm your son's diagnosis of ameloblastoma?

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