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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Hi, Colleen! Thanks for checking in.
Pathology confirmed ameloblastoma for both tumors, was iffy on the subtyping but said probably unicystic. That wasn't definitive enough for my oral surgeon to go with conservative surgery.
Therefore, I've gotten a referral to MD Anderson to pursue targeted therapy and I'm working through their process. Nominal first appointment isn't til mid-September, unfortunately. Every step seems to take so darn long.
It feels pretty lonely having such a rare disorder – this is the only place I've been able to communicate with others who also had/have ameloblastoma. The loneliness is compounded by needing to take my own road for targeted treatment instead of the conventional approach of radical surgery.
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Having Ameloblastoma comes with a multitude of complex emotions, and I know it can feel lonely but you are not alone and always remember you will not go through any situation in which you cannot handle. I wish you luck for the targeted therapy, remember to look after both your physical and mental health throughout this process and I know you’ll come out of this much better in all forms!
@anbar04 Just checking in on you! Hope things are going well
@hrhwilliam Thank you for the offer, I'd been waiting to respond until I had the detailed pathology report – which hopefully will be soon, the oral surgeon left me a message yesterday wanting to discuss the plan going forward.
Hi Tom, any update?
@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.
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.
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.
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?
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.
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