Diagnosed with Ameloblastoma

Hi @anniecl Thought I would jump in for a brief moment.
It would certainly be worth asking about the experience of the surgeons specifically with Fibula Free Flap. This procedure was done up until only a few years ago by just a handful of hospitals and clinics worldwide. It is very specific, tricky, micro-surgery and is a day-long procedure involving several surgeons and technicians all working as a team. Complications can and often will result if the team is not well versed in this surgery.
I can only say from my surgery at Mayo, Rochester (MN, not NY) Dr's Ettinger and Arce who have helped develop these procedures now used world-wide have also the experience of well over a thousand cases specific of Fibula Free Flap Mandible Resection.
I for one have had excellent results, walking, talking, chewing gum all at the same time.

@anniecl, you might reconsider Mayo Clinic in Florida. All Mayo Clinic locations use the same collaborative team approach. This includes collaboration with specialists from all locations.

You can read more here:
- What makes care at Mayo Clinic different? https://www.mayoclinic.org/patient-centered-care/what-makes-mayo-clinic-different
"Teams of specialists. Genuine collaboration. Focused on your health and safety.
Your Mayo Clinic team will be hand-picked according to your unique needs. It will likely include specialists within and across departments to evaluate your condition from fresh perspectives.

Plus, your team has access to more than 4,700 Mayo Clinic physicians and scientists on three campuses. If there's a question, alternate ideas and emerging research are just a phone call — or hallway — away. At Mayo Clinic, our approach leads to more answers and more happy endings for patients than anywhere else in the world."

If you'd like to inquire more, you can contact Mayo Clinic and ask specific questions http://mayocl.in/1mtmR63

-We lived in Menlo Park and I worked as a nurse at Stanford for over 20 years, about 20 years ago. Still have lots of friends in the area.
-Does Stanford have a team that routinely performs ameloblastoma surgery/reconstruction? -My son (23 years old living in Orlando, FL), had oral surgeon remove a mandible jaw "cyst" in August 2023. They said no biopsy needed, they would just take out the whole thing. Pathology report came back with ameloblastoma. Now after 3 months healing he just saw head and neck surgeon (Fawaz Makki) in Orlando who operates at an Advent Health hospital nearby. The newest CT shows they didn't get it all. (No surprise there.)
-I've looked at Stanford but cannot tell if they perform the surgery with fibula FF often and if they have a team approach to the surgery/post-op recovery--nurses on the post-op floor familiar with care, PT familiar with the fibula surgery and know what kind of care/exercises are needed, etc. We live in Rochester, NY--so will most likely have to fly wherever we go for surgery. Mayo is definitely on our list of options but need to know more about Stanford before getting a 2nd opinion there. Who were your surgeons? Do you know how often they perform this surgery?
_Thank you in advance and continued success with your recovery.
Annie

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

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

Not sure if it will help you, Tom, but I heard from patient stories that went through thyroid cancer take pills for radiation instead of going under the machine and they isolated themselves for a few days while they were on that medication. It sounded very similar from your description. Another thing I noticed you mentioned tumors, were there multiple tumors? My neighbor had multiple tumors too. Is it Ameloblastoma behavior that it gets split into multiple tumors? I am trying to relate my 2 tumors into that behavior.

On a personal update: About 5 days after starting the targeted drug therapy I realized that the aching in my jaw around the tumors was noticeably reduced. After a week, the aching basically stopped. I'm still definitely more tired than I should be, and probably my focus is a bit worse - but I haven't noticed any other side effects yet. Maybe reduced libido.

I don't really know how I should refer to the debrafnib + trametinib treatment I am on. Drug therapy? Targeted therapy? Genetically targeted therapy? Chemotherapy? Oral chemotherapy? Genetically targeted chemotherapy? They're definitely considered chemotherapy drugs, and I have to take precautions to not expose anyone else (I'm using a separate bathroom, washing clothes separately, immediately wash my hands thoroughly after handling the meds, etc). I just feel like I'm misleading people or overstating things if I refer to it as chemotherapy without going into details - usually when people hear "chemotherapy" they think of going into a treatment center for hours on an IV.

Yes, I'm probably overthinking things - I've done that my whole life. Outside perspectives are welcome. Any vaguely relevant questions are welcome.

@anbar04 Anbar you are my Connect Hero this year. Your battle, your recovery, your input carries far more value to this world than anything Taylor Swift could ever put on stage. You uplift everyone you connect with. Thanks for being you.
HRH William

I’m so happy that the targeted therapy is working for you and you took a leap of faith and it has paid off, you’ve got this! In terms of what to refer your treatment as I think it depends on your own personal preference, like you said it is chemotherapy and if you think that fits you more then call it that and if people do have questions then you can go into that detail, I think when it comes to your treatment remember that it’s your treatment and you don’t have to define it based on other people!