Diagnosed with Ameloblastoma

@hrhwilliam
Thank you for the support and quote! I have been doing lots of research which can be quite daunting at times. I think my main fear is the fact that will I ever be the same again after the surgery both physically and mentally? How long did it take for you to confidently say you have fully recovered?

I just had my pre-operative assessment today and I’m going to have my surgery on Monday, they decided to a scapula free flap in which instead of taking the bone from the leg they’ll be taking it from the shoulder bone. I feel nervous yet excited but I know it’s all going to be worth it!

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.

@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.

@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.

@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.

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?