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.

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

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)

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?

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)

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.

William Olsen, Volunteer Mentor | @hrhwilliam | Mar 7 7:57am

In reply to @momofj "Hi. Does Mayo treat children for Ameloblastoma? My 8 y/o old son likely has ameloblastoma (pending..." + (show)

Rare? Unicorn rare! But I would bet dollars to doughnuts that Mayo Rochester or Phoenix would handle this. You could call and specifically ask for the oral and maxillofacial surgery desk. Rochester has a level 1 children’s surgery center with five surgeons on staff who work closely with the specialist surgeons of all specific departments.
I am personally well aquatinted with adult and teenage Ameloblastoma patients through Rochester and their surgeons.
Your son will love Rochester in the summer time, the farms, rolling hills, and herds of wild unicorns.

momofj | @momofj | Mar 7 12:32am

In reply to @anniecl "Hi Meadow. I’m mom of a 25 year old guy who was diagnosed with ameloblastoma almost..." + (show)

@anniecl

Hi Meadow. I’m mom of a 25 year old guy who was diagnosed with ameloblastoma almost 2 years ago. His dentist saw something on a routine X-ray so took a CT and referred my son to an oral surgeon who was confident this was a “routine cyst” and they would just scoop it out. They were quite surprised when the pathology report showed amelo. My son was referred to a local head and neck surgeon in Orlando, FL where he lives. The H&N surgeon suggested surgery with a FFF within 6 months. I’m a nurse with about 40 years of experience in university medical centers in California and Iowa both inpatient and the clinics side of the “house.” I’ve been a bedside nurse and a unit manager. So I knew that a VERY experienced surgeon and surgical team, ICU nursing staff, floor nursing staff, physical therapist, etc. would be critical—where EVERYONE had cared for patients with this rare disease undergoing this type of extensive surgical procedure. I found Mayo-connect and an amelo Facebook group and asked many people where they had or were having their surgery. I called our insurance company (the 1-800 number on the back of your card), and asked about coverage for 2nd and 3rd opinions and for surgery done outside of our home state I called many medical centers around the country and looked at their websites to see if they had experience with this disease and procedure. I questioned my local dentist, my son’s childhood dentist and the oral surgeon who removed his wisdom teeth several years before. They offered names of hospitals and surgeons, but when I investigated I found none really had the necessary experience I was looking for. Many admitted they had heard of amelo but had never had a patient with it. We went to Mayo and saw Dr Arce (a name well-known in the field) and to Stanford, mostly b/c my nurse friends in the area could help my son (and I), with his recovery. We were very impressed with the Mayo experience and a “watch and wait” approach that was suggested. Their entire team has done hundreds of these surgeries. The surgical time is minimized by having one team working on the jaw, while the other team is working on the leg. They can place implant posts during the surgery which makes placing artificial teeth after healing much easier. And also less costly to the patient. If posts are placed months after the initial surgery they fall under dental insurance and are considered cosmetic—so reimbursement is much less— meaning you will pay for most of it. The Stanford surgeon had much less experience and the care seemed fragmented with someone in local private practice who would do the dental replacement surgeries several months later. He wanted to operate right away.
We decided to continue with Mayo where my son is having every 6 month video visits with Dr Arce where they review CTs from his local Orlando dentist.
This is a very supportive and knowledgeable group. Don’t hesitate to ask us any questions you have. Or to ask what you should be asking or considering.
Best of luck to you. We’re here to help.

Jump to this post

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?!

Tom Schwerdt | @tomschwerdt | Mar 3 1:58pm

No worries at all! I'm just trying to be supporting.

meadowj | @meadowj | Mar 3 7:52am

In reply to @tomschwerdt "@meadowj I've been thinking more about what you said. When I originally had my tumor removed,..." + (show)

Hi again, Tom,

It's been a long couple of weeks. I am still trying to gather assistance for expenses. I have X-rays too, technically. I just need to get them from the people who had previously provided me copies, which I sent to my referred surgeon. Sorry for the slow update! There has been a lot of back-and-forth on handling my procedure recently.

Tom Schwerdt | @tomschwerdt | Feb 23 8:52am

@meadowj

I've been thinking more about what you said.

When I originally had my tumor removed, the process inflamed or damaged the main nerve on that side of the jaw, so about a quarter of my face and part of the inside of my mouth (including part of my tongue) was numb for several months after the actual incision had healed over with gum tissue. As feeling came back, I had burning and itching around the edges of the numb area for several more months while the numb area shrank.

I still remember the stubborn final spot was on my chin - pretty far from the actual tumor removal. I'm wondering if you are experiencing something similar - part of your body repairing itself. It would be unprecedented for an ameloblastoma to meaningfully grow back in this short of a timeframe.

As an aside: Shaving a partially numb face is WEIRD! I hadn't realized how much I depended on sensation of the razor on my face to microadjust pressure.

For the imaging - I was referring to whatever Xrays or other imaging you already had done. You can often get online access to them.

meadowj | @meadowj | Feb 20 10:56am

In reply to @tomschwerdt "Having a new location show up definitely raises the concern level. Have you had a good..." + (show)

Sorry for the late reply, it's been a busy week, to say the least. I have yet to get the CT scan done, as the expenses outweigh my income, so it is at a standstill. Unfortunately, the pain has settled into a burning at the jaw so that does give concerns, once I officially get a full update, everything will be in immense detail about the current status, thank you again!

Tom Schwerdt | @tomschwerdt | Feb 14 3:07pm

Having a new location show up definitely raises the concern level. Have you had a good look at all of your imaging?

meadowj | @meadowj | Feb 14 2:28pm

In reply to @tomschwerdt "Medical costs can vary hugely between providers. I'm not even sure why a CT would be..." + (show)

Hi Tom,

thanks for checking in. I will be looking at that thread as well and that is extremely helpful. As for your question.

This cyst removal originally happened in March 2024, through the removal of my impacted wisdom teeth in the lower jaw section. Afterward, after having a follow-up in October, it was advised that a recurrence had happened in the lower jaw section. This spot was not the same area where the original wisdom tooth and cyst were, which was removed. It's hard for me to explain without pictures. The x-ray did not initially look big, and was recent, underneath the canine and first premolar.

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