Diagnosed with Ameloblastoma

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.

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.

@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💕🥰

@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!

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.

Hi @lesleylbrown and welcome to the Mayo Clinic Connect Head and Neck Cancer group. First of all Ameloblastoma is not considered a cancer, just to get that out of the way. Yet it is such a rare phenomenon of the dental / mandible / jaw area that we found it appropriate to place this group within the Head and Neck group. The surgery's are often related and certainly the rebuild surgery if necessary is roughly identical, and rare as well.
I personally have not had Ameloblastoma. However, I have had the same surgery as @anbar04 and others who check these pages regularly. Anbar is my hero in that she is young yet faced this issue head on (no pun intended, but it works) and has moved on in life certainly stronger than ever both in heart and mind. You will also find others here who can guide you along the way.
Word of caution, insure the surgeon is experience with this specifically. If not, get a referral or search on your own. If in the USA, there are a handful of hospitals / clinics with experience in Ameloblastoma, Mayo, M.D. Anderson, Cleveland Clinic, and a handful of others there for example.
Don't be scared. Courage. This can be managed and will be. Life is what happens when you are making other plans.

Thank you @anbar04 your kindness means more than I can express 😭❤️❤️❤️

@lesleylbrown

Be sure to discuss different surgery options and get additional opinions. It's a slow growing tumor. Make the right choices for your family. It's a SUPER rare tumor, so I echo what @hrhwilliam says - I would be sure to get a consultation at a top center like Mayo, MD Anderson, etc. I'm in Texas, so I ended up at MD Anderson this time.

I had conservative surgery (jaw preservation surgery) when I originally had the ameloblastoma detected in 2007. It took about 15 years for the ameloblastoma to grow back to similar size.

A couple of years ago, a genetically targeted drug regimen (targeted chemotherapy) was approved by the FDA for BRAF V600E tumors, which is the mutation in ~80% of mandibular (jawbone) ameloblastomas. I take 5 pills a day and the tumor is slowly shrinking/bone regrowing.

I was the first ameloblastoma patient to get this treatment at MD Anderson on Houston, starting last October. Months ago I found out that a second ameloblastoma patient started getting this treatment. A third person that I met on a different forum is headed there for an evaluation next week.

Thank you so much for your words of advice @tomschwerdt and @hrhwilliam

We are scheduled for an appointment tomorrow. We were referred to UTMB in Galveston, which is awful timing due to a newly developed hurricane in the gulf! Hoping this doesn't affect our travels (probably about an hour away).

I look forward to asking questions and getting more information. @hrhwilliam the first question I have on my list is what is the doctor's experience dealing with ameloblastoma.

@hrhwilliam @tomschwerdt @anbar04 i have a list of questions to ask, but if there is anything important you can think of that I should ask please, let me know! Any information would be greatly appreciated.

@tomschwerdt How are you doing with the chemotherapy? Have you had any side-effects? I'm hoping for a conservative surgery since my son is so young. If conservative surgery isn't an option, i would be nice to have another option instead of going directly for a jaw resection 🙁