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.

@lesleylbrown

@anbar04 Thank you or your kind words and any prayers you can send my son's way. The anxiety has been awful. Like a constant lump in my throat. I'm hoping with our appointment next week, we can at least have some tests done. We were referred from our dentist to an oral surgeon, which is where we were given the prognosis. That oral surgeon has referred us to another oral surgeon who is associated with a hospital that can operate on a child his age. So I'm not sure if this appointment will be another consultation or if they will have tests scheduled as well.

I am thankful to have found this forum. There is so much helpful information, and very supportive members!

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I think with the appointment try to ask all the questions you have don’t even feel bad for asking I asked about 30 questions! I think it can be an appointment to go through your options and ease any worries you have and they may do some tests or schedule for scans etc. I think whilst being a support system for your son also have a support system for yourself and don’t feel bad for how you feel each day is different so take it as it comes.

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@anbar04

@lesleylbrown I’m sorry to hear that we’ll all be praying for and wishing the best for your son. It’s always nerve-racking to be diagnosed with something so rare and I can only imagine how it must feel as mother. The best thing you can do to relieve the anxiety is to keep supporting your son throughout this process but also take time for yourself to come to terms with everything and feel well informed with how the process may be for him. Just know that as long as he’s in good hands he’ll be ok and that this journey reflects your sons and also your own strength and can build character in ways you’d never think. In the meantime research is good and you can always ask us if you have any questions and know that with hardship comes ease💕🥰

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@anbar04 Thank you or your kind words and any prayers you can send my son's way. The anxiety has been awful. Like a constant lump in my throat. I'm hoping with our appointment next week, we can at least have some tests done. We were referred from our dentist to an oral surgeon, which is where we were given the prognosis. That oral surgeon has referred us to another oral surgeon who is associated with a hospital that can operate on a child his age. So I'm not sure if this appointment will be another consultation or if they will have tests scheduled as well.

I am thankful to have found this forum. There is so much helpful information, and very supportive members!

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@lesleylbrown

Hi everyone. I had read through many of your stories and found them very informative. I mainly came to this page because my 10 year old son received a prognosis of ameloblastoma. We just found out two days ago and I am completely stressed out. Our oral surgeon referred us to a different oral surgeon who is associated with a hospital that can operate on children. Our appointment is next week and I'm just anxiously reading information until then.

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@lesleylbrown I’m sorry to hear that we’ll all be praying for and wishing the best for your son. It’s always nerve-racking to be diagnosed with something so rare and I can only imagine how it must feel as mother. The best thing you can do to relieve the anxiety is to keep supporting your son throughout this process but also take time for yourself to come to terms with everything and feel well informed with how the process may be for him. Just know that as long as he’s in good hands he’ll be ok and that this journey reflects your sons and also your own strength and can build character in ways you’d never think. In the meantime research is good and you can always ask us if you have any questions and know that with hardship comes ease💕🥰

REPLY

Hi everyone. I had read through many of your stories and found them very informative. I mainly came to this page because my 10 year old son received a prognosis of ameloblastoma. We just found out two days ago and I am completely stressed out. Our oral surgeon referred us to a different oral surgeon who is associated with a hospital that can operate on children. Our appointment is next week and I'm just anxiously reading information until then.

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Had someone else with a mandibular ameloblastoma reach out to me for more information on another forum some weeks ago. Obviously I shared my experience. They decided to pursue the targeted chemotherapy at MD Anderson and have an initial appointment later this month. MDA is already getting the biopsy sample for genetic testing to confirm whether it's BRAF V600E.

So it looks likely that by the end of the month there will be three of us with the same treatment plan at MDA. I hope it works out well for all of us.

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@tomschwerdt

Hey, just checking on my Ameloblastoma peeps!

Still continuing on here, next CT is mid-September. Nothing really new to report on the targeted chemo.

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Tom, I wish you the best. I hope all goes well next scan. Your input to this group is so valuable, your journey so unique.

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Hey, just checking on my Ameloblastoma peeps!

Still continuing on here, next CT is mid-September. Nothing really new to report on the targeted chemo.

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@ssalava

After seeing Dr. Arce for my annual visit first thing this morning, they worked me in today to remove the granulation tissue for the 4th time (by Dr. Wu). But it has been two years since the last time it was removed (Dr. Van Ess) and I suspect I will be having this done every year or two. Everything is good with my permanent prosthetic.

It is Facebook so there's that...but it is a private group not to dissimilar to this community. Unlike this Mayo group, the vast majority of the members of the private Facebook group are not receiving the level of care that we get with Mayo.

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Hi @ssalava An additional note. I just returned from an Oral and Maxillofacial group visit for a check-up, which was fine now four years out. We discussed "a patient" having granulation tissue removed now four times. Everyone involved seem to agree that "a patient" has excessive tissue growth as part of the healing, is not considered in the center of the Bell Curve but more to one side whilst I myself am on the other side of the same curve. We are all different. We all have unique experiences and differing healing properties. Dr. Arce's group is doing the best they know how to make this patient comfortable and fully healed where repeated granulation or de-bulking will no longer be necessary.
I hope for you this is the last time and your future visits come out 100% good. We both have gone through something that would make most folks legs buckle at the mere thought of it. I think in the long run it makes us stronger than most, certainly unique, and especially brave, like Horatius, Captain of the Gate. He survived too!

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@hrhwilliam

Thanks for the info. As far as mouth opening goes, with lots of practice I can now consume a large sandwich or hamburger using a knife and fork and eating European style, fork reversed in left hand and knife in right without switching out like we do in the states. As always, everything is cut into small bites. I get looks in restaurants especially eating chicken or ribs with utensils but I don't really care, it works. Good luck with finding what works as time goes by.

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My dad ( born 1907) was a commander in the US Navy. His family was dirt poor, so it must’ve been in officers training that he learned his table manners—which were excellent. I grew up watching him eat everything with a knife and fork—fried chicken, even pizza! (Which I sometimes do as well.) So if others look puzzled seeing you using eating utensils while they use their hands, just assume the poor things never learned proper etiquette. 🤣

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@kkd

Just wanted to update the group that they did CT scan in Feb 2024 and they found that the plate dropped a little bit into my mouth, only option was to remove the plate through surgery. I completed radiation in Sep 2023, they had to wait 6 months after radiation. Did MRI in Apr 2024, no tumor growth. Finally got the plate removed in May, the bone is healthy and fused, so no biopsy done during surgery. It's been 6 weeks since I got the plate removed and next MRI scheduled for Oct 2024 to monitor the tumor. Working on mouth opening exercises, still around 15mm opening.

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Thanks for the info. As far as mouth opening goes, with lots of practice I can now consume a large sandwich or hamburger using a knife and fork and eating European style, fork reversed in left hand and knife in right without switching out like we do in the states. As always, everything is cut into small bites. I get looks in restaurants especially eating chicken or ribs with utensils but I don't really care, it works. Good luck with finding what works as time goes by.

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