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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So, just got back from my MDA followup. After ~8 weeks on the targeted oral chemotherapy, my ameloblastoma is… stable.
It's definitely good news. Was I hoping there would be some shrinkage? Of course – but I'll take it. Pain hasn't come back, just the occasional odd sensation in the jaw/teeth.
T4 (Thyroid hormone) is also back (barely) in the normal range, with the lowest dose pill of Synthroid for ~4 weeks.
-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.
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Annie, sorry for the late response. Dr. Divi did my fibula free flap reconstruction. From what I heard by his fellow doctors was that they do these every week. They have full team of Swallow pathologists, Dieticians, nurses who are trained to support the patient recovery. Not just Ameloblastoma, they treat anything related to head & neck tumors. Their web site is very bad, doesn't list doctors experience or qualifications very well like other web sites I have seen, a lot of stale information. Hope they take time to update their website. They are too busy for that.
It took Oral surgeon & Dr. Divi almost 10 hours to remove the tumor and do the reconstruction. I love the speedy responses that Dr. Divi team provides. They also perform their tasks with the same speed behind the scenes. I live only 12 miles from Stanford, so I chose them. UCSF Dr. El-Sayed is good too. UCSF doesn't need any referral, but Stanford does need a referral to Head & Neck Oncology department. I got referred by Stanford Oral surgeon. I wish I had gone to HNO department to begin with.
If you like Mayo in FL and it is close to your son, you may want to prefer that per Colleen and other referrals. If Mayo FL has experience in treating these just like Stanford & UCSF, or even better than those 2, then you are in the right place.
-I contacted Mayo in Jacksonville again and spoke with the head and neck surgery clinic and now have heard that they do care for people with ameloblastoma
Will be sending records there for review. Not sure who I spoke with the first time I called several months ago.
-Were you treated at Mayo Jacksonville? If so, what was your experience?
Thanks in advance.
@anniecl, that's great news. I'm so glad that you contacted Mayo Clinic in Jacksonville again and will have your records reviewed. I believe fellow members @paulreese and @davehutsell have been treated at Mayo Clinic in Jacksonville for head and neck-related cancers.
Hoping for the best, Annie. Keep us posted.
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.
Thanks so much. My thoughts exactly!
@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
Yes, since it's ameloblastoma – basic removal as if it were a cyst isn't going to do the job.
One thing that may make you feel better – ameloblastomas tend to grow quite slowly, so you can take a bit of time to find the right surgery team then make travel and recovery arrangements.
As an aside, since it's mandibular – there's about an 80% chance the ameloblastoma has the BRAF V600E mutation.
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.
Hey @kkd I'm going to be on these chemotherapy pills for awhile, so it's really not practical to completely isolate myself. I'm not sure how long, but I expect at a minimum it will be multiple months since the 1-month appointment tests don't include any imaging, just making sure that the chemo isn't harming my other systems too badly (blood tests, EKG, Echocardiogram). I'll be asking the MDA team when they expect to do imaging to check on how things are changing (hopefully improving!)
Thyroid cancer can use radioactive iodine to physically target where most of the radioactivity ends up, since the thyroid gland is the primary collection point for iodine in the body.
My pills aren't radiation – they're a combination of one which genetically targets the mutation in my tumor (BRAF V600E mutation) and a second drug which slows metabolism/excretion of the first drug, and according to my oncologist reduces side effects somehow.
Back in 2007 I had one tumor. Now I have two – which really shouldn't be surprising. To me it looks like they came back from two locations along the margins of the original conservative surgery.
While I'm not thrilled they came back, at least they were spotted sooner than if I'd done the original resection plan the oral surgeon proposed – the titanium plate would have blocked the X-rays. Even with aggressive resection, ameloblastoma can definitely recur.
I guess my only real regret from treatment of the original 2007 tumor is that after the initial 5 years of monitoring and being pronounced "cured" – I didn't ask to continue monitoring. Might have been able to catch this sooner if I had.
Since I seem to be getting deep into the technical weeds, I feel that I have to put forth a disclaimer again: I'm not a doctor, and while my job is overseeing research projects – it's not even close to medical research. I'm just sharing my experiences and my understanding of what I've read in reputable medical literature (generally off the NIH Pub Med.) It's entirely possible I'm unaware of some context a medical professional would understand. Talk to your doctors for actual medical opinions.
@colleenyoung Just want to make sure I'm still operating within community guidelines.
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