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.
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Hey @caw @colleenyoung
Just joined the community today. Being such a rare tumor, it's hard to find a place where you can have a good discussion with people who understand. Hope it's not too much of an info dump below:
My original ameloblastoma diagnosis was in 2007. Even getting a diagnosis from the biopsy took forever. The oral surgeon initially wanted to perform a resection and titanium plate, we settled on removing the tumor and as much margin as possible while keeping the basis for a normal mandible. Lost 2 teeth. After initial healing, had an autologous bone graft (from far back on my mandible, behind the last tooth), followed by 2 dental implants. After 5 years of followup panoramic X-rays I was pronounced "cured" and told I didn't need to keep up with the panos.
Looking back, that was a mistake – I should have pushed for an annual pano. Based on the pano I had at my dentist a couple of weeks ago, it's very likely back – but in two locations. I still don't regret having conservative surgery, but if the regrowth had been caught sooner/smaller it would have been easier to deal with.
Consulted with an oral surgeon already, now waiting to get the biopsies done and a confirmed diagnosis.
I've asked for genetic screening of the tumor – it appears that the majority of mandibular ameloblastomas are associated with the BRAF V600E mutation, and there are FDA approved drug treatments for some BRAF V600E initiated tumors: combined Dabrafenib-Tratmetinib. Unfortunately outside some very limited studies, nobody seems to be taking drug treatment approach. US studies have basically been 1-patient case studies. Biggest study I could find was 12 patients in Israel. Literally 100% of them had significant tumor shrinkage within 8 weeks. 10 of them had switched from a planned resection to jaw preservation surgery – and the other two were not far behind, likely to switch as well.
It seems to me that there really should be more effort in taking an oncology/drug approach to treating ameloblastomas, rather than an approach of pushing for radical surgery as a first line treatment.
– BRAF inhibitor: a novel therapy for ameloblastoma in mandible https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6328504/
– BRAF-targeted therapy for locally advanced ameloblastoma of the mandible: A potential neoadjuvant strategy. https://ascopubs.org/doi/abs/10.1200/JCO.2022.40.16_suppl.3149
– FDA grants accelerated approval to dabrafenib in combination with trametinib for unresectable or metastatic solid tumors with BRAF V600E mutation https://www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-accelerated-approval-dabrafenib-combination-trametinib-unresectable-or-metastatic-solid
I admit, the full resection scares me. Oral surgeon was already talking about removal of nearly the entire left side of my mandible, fibular flap, etc.
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I'm sorry you are going through this. In my case, the tumor was already so large and had penetrated through the mandible, a conservative approach wasn't an option for me. I would be curious to hear what my surgeons have to say about the BRAF therapies. I'll have to ask when I go for follow up this fall.
Hey guys, I am an 18 year old girl who was diagnosed with ameloblastoma in my right mandible in November 2021. I am currently heading to an appointment on Thursday for a final decision on if they will do the jaw reconstruction or if they will simply take the tumour out and put in a metal plate to see if it comes back. I am currently feeling very overwhelmed and scared and I just wanted to ask how any of you guys coped. I feel as though none of my family or friends can understand but i appreciate them trying. Thank you so much
Hey @anbar04 ! William mentioned you, so I thought I would reach out.
I hope you make the right decision for you. I totally feel you on the overwhelmed and scared – I'm right there with you and I'm nearly 50. There are no local (or even local-ish) discussion or support groups near me, which is how I ended up here!
When I had my first ameloblastoma in 2007, I pushed for and got the less radical surgery, along with a bone graft from further back in my jaw and dental implants. I then did pano X-rays for 5 years and was pronounced cured. The ameloblastoma has probably recurred (biopsy scheduled for May 30th to confirm). I don't regret going with the more conservative surgery, I only regret that I didn't keep having an annual pano X-ray to catch the recurrence earlier.
In the meantime, there is some really useful looking research on targeted drugs (see above for details)
That said, as far as I can tell there isn't anyone routinely administering a drug treatment for ameloblastomas yet.
Thank you so much for all the support and the welcome, i appreciate it more than I can ever express on text. They decided to do a full jaw reconstruction with the fibula free help in June after my exams. I feel nervous but also relieved that I know which direction I am heading in, I think I just feel quite scared.
Your surgery: either coming up very soon or you are recovering as it is well into the month of June.
Just wanted to say “Good luck” from this old cowboy. Courage!
Hey all – initial pathology report from the specialty pathologist confirmed the ameloblastoma is back. Oral surgeon is already pushing pathology to identify subtype since the report did not specify.
Thank you guys for all the support it means so much to me! I’ve had some bumps along the road, the original plan was to have a fibula free flap but a CT scan showed that I only have one artery and if they cut then my leg would have fallen off! So the new plan is to do a scapula free flap in which they’re going to take bone from just below the armpit up to just where the stomach begins and then reconstruct the jaw from that bone. My provisional surgery date is the 11th of July, I just want it out as soon as possible to be honest because it keeps bleeding and the pain is just annoying!! But thank you again for all the support I cannot stress enough how much it means to me.
That sounds so annoying, I’m so sorry it’s come back but on the bright side there are so many routes for treatment, what are they planning to do after identification?
@anbar04 Thank you so much for your support! Best of luck with your surgery!
If my ameloblastoma is unicystic, my current oral surgeon is onboard with conservative (jaw preservation) surgery. If not, he's very likely going to want the radical resection + fibular flap which really freaks me out.
That likely means I'll be looking for genetic screening for the BRAF V600E mutation in the tumor, which is most likely the cause of the ameloblastoma (most mandibular ameloblastomas have that mutation.) If that's confirmed, I'll look for a doctor willing to try targeted treatment – likely an oncologist since several cancers with BRAF V600E have an FDA approved drug treatment targeted at that mutation.
Fortunately, I should have some time. I didn't have any bleeding from the ameloblastoma, and the biopsy surgery significantly reduced the pressure from inside my jaw.
The big MD Anderson cancer center in Houston is only about a 3 hour drive. My PCP is onboard with a second opinion/referral to MD Anderson.
All that said, I'm not locked into either oncologist or MD Anderson – those just look like the most likely routes.
Although I have not been through the big surgery yet, I will say it’s normal to be scared it’s such a daunting process I find myself counting down the days when my mind is free, but what keeps me going is knowing that I’m in the best hands, I have an amazing support system and this will teach me so much about myself and it’s reassuring to know this is the most effective cause of treatment as well. I was not able to qualify for the BRAF genetic screening but hopefully if that’s the option you are most happy about that you are able to qualify! You’ve got this, there’s not hardship presented to you that does not come with ease.
Hey Tom, if it comes to the free flap resection I can walk you through any concerns you might have. It’s not fun but you will be up and around in no time.
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