Diagnosed with Ameloblastoma

That is correct, Tom, it was very rough. My dad went through very big spine surgery 2 times last year while this was happening, had to deal with that too. Unfortunately, the tumor grew that big because it had enough space in sinus area (Maxilla) and I did not go to dentist until I had tooth pain. Kaiser Oral/Maxillofacial Pain doctor said that it was due to TMJ that I was getting that pain after reviewing my MRI last year, he gave me mouth guard to wear in the night so I don't grind/chew on my teeth in sleep. It actually helped with my pain, but I found 4th loose tooth even after wearing that. Filed a complaint with Kaiser earlier this year even after I left them, after I came to know about the tumor, and they decided that I did not give all my symptoms to the doctor so they did not do MRI or look for other areas other than where I reported the pain (near my ear).

If it was detected when my dentist discovered 2 loose teeth in Jan 2022, I wouldn't have to go through all this. But we never know what the condition was back then, it was just a guess. We cannot reverse any of that, I am gaining energy back, slowly recovering from radiation side effects, started eating some soft solid foods.

What type of conservative surgery did they do in 2007 for you that it came back after 16 years? Please let me know if DM is better for this type of questions. I found this discussion forum helpful for me, so shared all my details here for others to know & learn as well.

Yes, Mayo Rochester has a great team approach. I had free flap fibula as well as immediate reconstruction of the maxilla. They even brought in the prosthodontist for the posts for the implants during surgery. The post surgical floor was very knowledgeable in the care of amelo patience. I had a 10 1/2 hour surgery.

@kkd Wow, that sounds really, really rough.

Best of luck on your recovery. You're the first person I've heard from with a maxillary ameloblastoma.

It does not surprise me your tumor didn't have the BRAF V600E mutation - from what I could find in the literature, that mutation shows up in somewhere around 80% of mandibular ameloblastomas, and is rarely if ever seen in maxillary ameloblastomas.

Hi Tom, good luck with your targeted treatment.

Here is my story:
I was recently diagnosed with Ameloblastoma in my Maxilla bone, it took one year for the diagnosis after visiting several doctors (dentist, endodontist, internal medicine, oral/maxilla facial pain, orthodontist). By then, the tumor became large per CT scan done by ENT specialist at PAMF in Mountain View, CA.

The biopsy sample was tested by 2 different institutions to confirm it was Ameloblastoma benign tumor. The PAMF doctor who did my biopsy referred me to Stanford Oral/Maxillofacial Department in Feb 2023. It took them 3 months to give me a surgery date because it involved 2 surgeons from 2 different departments (1 surgeon from Oral/Maxillofacial Department for tumor dissection and 1 from head/neck oncology department for reconstruction).

After the complex surgery for 10 hours, they did an emergency redo within 24 hours on flap because it was missing blood flow, I was able to recover with ups and downs for the flap to survive. Stanford pathology came back after 4 weeks saying it was Ameloblastic Carcinoma with no BRAF mutation. So Stanford medical oncologist mentioned that I had to go through surgery/radiation treatment and no chemo/medical treatment. I went through surgery by then, so radiation was the next step. But my Head/Neck Oncologist performed another CT & MRI and found out that another tumor split from main tumor and started eating bone in the skull base. So they had to perform another surgery before going radiation.

I finally went for second surgery with neurosurgeon to remove that newly discovered tumor and the same Head & Neck Oncologist to remove extra margins from the first surgery location. Radiation therapy was started after 5 weeks of second surgery and 11 weeks of first surgery. Radiation was planned for 33 sessions everyday M-F and now I am in recovery mode.

In Summary, here are the timelines I went through:
Jan 2022-Jan 2023: Dentist, Endodontist, Kaiser PCP, Kaiser Oral/Maxillofacial Pain MRI test, changed insurance because wasn't happy with Kaiser
Feb 2023: Orthodontist who discovered lost Maxilla bone, PAMF ENT doctor biopsy
Mar 2023: PAMF pathology, UTSW pathology, UCSF Head & Neck, UCSF MRI, UCSF biopsy slides review, all confirmed that Ameloblastoma benign tumor
Apr 2023: Stanford surgeons meetup, leg CT scans for reconstruction
May 2023: Stanford tumor resection & reconstruction surgery
June 2023: Stanford pathology confirmed that Benign turned into Carcinoma from removed bone tests and tumor mass tests
July 2023: Neurosurgeon skull base surgery
Aug 2023: Radiation started
Sep 2023: Radiation ended
Oct 2023-Current: Recovery

@anniecl

Original 2007 biopsy and conservative surgery: Dr Lance Read at BSW in Temple
Recent 2023 biopsy: Dr Nolan Jenkins at Midtown Oral in Austin (2023)

If I were going through with the radical resection and fibular flap, I would have stayed with Dr. Jenkins. I am confident in him as a surgeon, and with his experience with ameloblastoma surgery in specific.

At MD Anderson in Houston, Dr Ann Gillenwater is heading up the team for my ameloblastoma. There were a lot of hoops to jump through before I started the dabrafenib-trametenib drug treatment targeting the BRAF V600E mutation this past Tuesday. MDA did the genetic screening after getting the pathology slides from the biopsy transferred to them.

I am not aware of any other hospital/doctor in the USA who is currently treating ameloblastoma with targeted therapy, and I think I'm the first for MDA.

As far as I know Stanford did one research case study (ie one person) treating ameloblastoma with the dabrafenib-trematenib treatment I am on. It worked at shrinking the tumor and regrowing bone. I haven't seen a long-term followup.

The biggest ameloblastoma targeted treatment study I could find was out of Israel and came out last year - still small with only 12 patients using targeted drug treatment (half got dabrafenib-trametenib, half just got dabrafenib) 100% showed significant tumor shrinkage and bone regrowth. Again, no long-term data.

According to my oncologist at MDA, the dabrafenib-trametenib combo typically has fewer side effects than straight dabrafenib - but that's based on use in melanoma and other cancers.

Side effects for me so far are mostly just being more tired. The first day I had trouble focusing, but that went away and could have been unrelated, or just the stress of waiting and anticipation coming to an end. On a positive note, the aching in my jaw has gotten less frequent.

Feel free to PM me if you would like to go into more detail.

Thanks so much. Yes, Mayo in Rochester is on our list of places for a 2nd opinion. There is a Mayo in Jacksonville, Florida (north end of the state) but they don't seem to have team approach to amelo. surgery, as they appear to in MN. And that is what the radical surgery needs. I haven't yet found anywhere else in Florida that has an amelo. center. The pathologist in the oral surgeon's office initially said we would be referred to Univ of Florida (also in Jacksonville) if the surgery revealed something unusual. But after the oral surgery and pathology report diagnosed amelo, the pathologist said it was difficult to get an appointment at the U of Florida... I think there is no amelo specialist in Florida, but just want to be sure. Again, thank you for your information about Houston. Annie

I can recommend two surgeons in Central Texas who have dealt with ameloblastomas - I have no information on treatment in Florida.

My original surgeon still practices in Temple, TX at the huge Baylor, Scott and White complex. He did want to do the more radical surgery on my first round (~2007) - but I opted for more conservative treatment.

My current oral surgeon in Austin did a fabulous job with the biopsy, and really knows ameloblastoma surgery. If I were going forward with surgery, I would be quite confident in him.

Let me know if you would like specifics.

I had surgery July ‘22 and was scheduled for Houston but the doctor had his feeling hurt by asking a question so I went to Mayo Clinic Rochester and they were excellent surgeons. I couldn’t be happier. Good luck

Where did you choose to have your surgery? My son lives in Orlando, Florida and we are not finding surgeons or centers experienced with this. Some are willing to operate, but with ameloblastoma I don't think we need to be someone's first case. We are willing to travel if needed--and assume we will need to. Just trying to get options for him. Thanks.