Diagnosed with Ameloblastoma

Likely Dr. Ettinger? Along with Arce and Mueller they are my team as well for a mandible reconstruction however not for Ameloblastoma but for Osteoradionecrosis. Amazing stuff they do. If it wasn’t for HIPA, we could all get together (at Rochester in the Summer) and celebrate this wonderful team.

In the early days of the pandemic lockdown, I had an MRI for my pituitary gland requested by my PCP and while not in the target zone, a 'mass' could be seen in my upper right sinus cavity. So I was referred to an ENT but it took weeks to get into to see him because COVID-19 protocols were fluid. After several weeks, my ENT performed a 360 CT scan confirming the tumor's location and size. It was removed through my nose via day surgery a few weeks later and the pathology confirmed the removed tissue was an Ameloblastoma tumor.

With follow-ups exams (via video camera up my nose) with my ENT, and while unspoken, I could see the concern in his body language and facial expressions. The tumor was re-growing. An MRI six months after removal confirmed such and I was referred to a local maxillary surgeon and dental specialist (prosthodontist).

But I ended up choosing the Mayo Clinic with Dr. Arce and his partner (name escapes me). After a six hour maxillary re-section surgery with an FFF, the tumor was removed for the 2nd time 13 months after the ENT's surgery.

I visit Rochester once a year (during the summer, never again in the winter, I'm from Texas) to see Dr. Arce and Dr. Mueller. My local ENT performs a nose video exam and orders an MRI once a year to confirm no re-growth.

The conversation with @meadowj made me start thinking about imaging.

Are CT scans meaningfully better than simpler/cheaper/faster techniques for tracking an ameloblastoma? A panoramic Xray gives you a darn good 2D view and should cost very little (with insurance). CT with contrast also means a pretty decent sized injection of iodine.

I never had one for my original diagnosis, just a panoramic Xray. 5 years of annual followups were panoramic Xray as well. The regrowth was discovered on a panoramic Xray.

Sure, you get 3D with a CT scan, but depending on the radiologist, my CT reports from MDA might have 3D measurements of the tumor. Or just 2D measurements. Or none, just a ballpark "it looks about the same" type result.

I plan to discuss with my oncologist when I next go to Houston.

Hey Tom-

CT showed no ameloblastoma activity. Very minor bone regrowth - not enough to consider reconstructive work yet. So moving in the right direction. Still going to continue with monitoring, but now at every 6-months intervals.

Hope you’re doing well!

-E

Hey Erik - it's been a few months, how are things going?

Thank you for the update!

I haven't been to the thread in a while but I thought I would come to check in!

We've had a few follow ups and the doctor is happy with the bone growth in the area where the ameloblastoma was removed. We will continue follow ups, slowly spacing them out. Basically just monitoring for reoccurrence.

Based on what you mentioned @tomschwerdt I did ask the doctor if we could check if the BRAF V600E mutation was present and it tested negative for the mutation.

I was kind of sadden by the news. I was hoping that maybe we had another treatment option to surgery in the case of reoccurrence.

@lesleylbrown Happy to share my experience and hope that it continues to be helpful.

~80% of mandibular amelobastomas have the BRAF V600E mutation, and there is targeted drug therapy for tumors with that mutation.

That said, it's very early days for using that therapy for ameloblastomas with that mutation.

Since all the studies ended by ~6 months of treatment and I've been on the treatment for over a year - I may well hold the "world record" for longest BRAF V600E targeted treatment of an ameloblastoma.

As of the last CT scan, it still appears to be working at shrinking the tumor and regrowing bone - just slowly.

@tomschwerdt again for all the insight you've provided. It definitely helps us feel a little more in control of of uncontrollable situation, as far as knowing what the options are and hearing everyone's experiences.

The doctor said he thinks there is a 50/50 chance of reoccurrence. I sent a message to see what his doctor thinks about genetic testing and other treatment options.

Wow! Desmoplastic ameloblastoma is a rare variant of an already very, very rare tumor! I was diagnosed with the unicystic variant both times.

If (when) it comes back, I highly recommend getting genetic testing of the tumor to see if there is targeted therapy available. I'm not telling you to do the targeted therapy, just that it's important to know whether it is a viable option. After that you, your son and your doctors need to find the best choices for your (his) particular situation.

My personal concerns about resection are largely about long-term or permanent loss of function both from a structural perspective and from a functionality perspective (permanent nerve damage).