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Diagnosed with Ameloblastoma
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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Thanks very much,waiting for ct scan results,then see what they say and weigh things up.
@rualto
Hello and welcome to our tiny little club - so tiny that even the Rare Diseases organization doesn't have a group for us.
Conservative surgery (enucleation and curretage) on my ameloblastoma got me 15 years before recurrence. After the jawbone mostly regrew, they did a bone transplant from further back in my jaw and inserted 2 implant posts.
After recovery and getting the implants crowned - I had normal jaw function.
Targeted oral chemotherapy bought me another ~3 years. It shrank the tumor for awhile but eventually became ineffective. I'll be discussing options with my oncologist in a few months.
Most mandibular ameloblastomas have the BRAF V600E mutation, including mine - which is why there was an available targeted therapy.
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1 ReactionConservative surgery has a pretty high chance of eventual recurrence. Radical surgery reduces that chance, but there is still a meaningful chance of recurrence. Ameloblastoma is a tenacious little bugger!
18 years later, I'm satisfied with my choice.
Once all reasonable options are exhausted, I can still choose the radical surgery - and in the meantime, the "standard" for the radical surgery has advanced. Originally I would have had titanium plates holding together the remains of my jawbone - today, a bone transplant (fibular flap) is standard.
@therock I think it,s going to be all about the cost with the nhs and my age,am no spring chicken,so not sure if I could stand the radical surgery.The conservative route is still surgery,but only about 2 hours .Thanks for answering,
@tomschwerdt that,s really interesting and instructive too.
You are right about the tiny club we,re in,the consultant said that they could have knocked him down with a feather when it came back as ameloblastoma.
I read about going down the chemo route,I will speak about this when I go back to clinic,it is great to speak to someone who has gone through all this.
@rualto
Yes it was a 10 hour surgery and I was 58 at the time.
@therock I think you were very brave,I must admit that it scares me going the radical way.