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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I really want to know because my daughter age 14 will do the operation like yours
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Hello @city, I’m sorry I was off line for most of the day and didn’t see this post right away.
I have no eating issues other than what cancer radiation left me with over twenty years ago. The mandible surgery and prosthetic teeth implant has actually improved my ability to chew.
I had to pass a swallow test before I was discharged from hospital but really have had no new issues with swallowing.
Speech was a bit distorted until my teeth were replaced. I also have a numb area on my lower lip and chin but have managed after a bit of practice to get the straw in my mouth from my root beer float on Saturdays which I enjoy so much.
14 years old is hard to imagine having to go through any surgery let alone one that will require healing in both the head and leg at the same time. It will be ok because she will heal.
I have a nifty long scar on my leg that when asked I just say “don’t swim with sharks.” The jaw scar blends into the folds of the neck so it’s not bad at all. The smile is a bit of a “pirate” smile and it’s good to be unique. As I say to all who ask, Courage! She will be fine.
Any questions as she goes on this journey please just ask.
When does this happen for her?
My 23 year old son was recently diagnosed with ameloblastoma in Orlando, FL. His lower jaw/mandible cyst was seen on annual dental xrays and he was referred to a local oral surgeon. The pathologist we met before surgery said it was most likely OKC vs a dentigenous cyst. He had surgery to remove the cyst in the surgeon's office with a local and IV sedation and went home afterwards. (He is well-healed now, back to work and school and will be on a soft diet for 3-4 months while the bone graft heals.) However, the pathology report came back with amelobalstoma. He has been referred to another local Orlando MD who is a head and neck surgeon for "monitoring" starting in 3-4 months after he is healed.
I am a former oncology nurse and everything I read mentions removing healthy tissue around the ameloblastoma in the hopes that all the tumor cells will be removed to lessen the chance of recurrence. Because the surgeon wasn't expecting this diagnosis, I believe he only removed the cyst and the lining (like a balloon) that surrounded it. We feel our son should be seen at a major medical center where the physicians have more experience with this type of tumor. We would at least like a 2nd opinion at such a center to tell us if he should actually have more tissue/bone removed asap, or if monitoring by a local head and neck surgeon in Orlando is appropriate. Besides the Mayo Clinic, are there other centers of excellence for ameloblastoma? Stanford appears to be doing research. Is there anything at MD Anderson, Cleveland Clinic? Anywhere else?
Thanks so much in advance. Annie
@anniecl Any major city or smaller city with a major medical center should have at least one oral surgeon experienced with surgical removal of ameloblastoma. Yes, surgical removal generally recommends removing a fair amount of healthy-looking bone around the ameloblastoma. I opted for conservative surgery ~15 years ago, and the ameloblastoma has finally come back (actually two now, presumably from each edge of the original). My surgeon did remove additional bone, but left enough to maintain a natural jaw.
Note: The below is a description of how I am approaching my situation. I am not recommending a particular course of action for anyone else.
My current oral surgeon wants to perform a radical resection and fibular flap, which is pretty major surgery. He was also dubious about the nerve being saved, which would leave me with 1/4 of my face permanently numb. I'm also concerned about the need for speech therapy, physical therapy, possibly a feeding tube for awhile, etc.
Therefore, I'm trying an uncommon approach – I'm requesting evaluation for targeted therapy at MD Anderson. The vast majority of mandibular ameloblastomas have the BRAF V600E mutation, and there is an FDA approved drug treatment for some cancers and "advanced solid tumors" with BRAF V600E. The drug regimen is Dabrafenib + Trematenib.
Unfortunately, the research on using this drug treatment for ameloblastoma treatment is quite limited. You mentioned Stanford – they did a 1-patient case study (tumor shrunk, bone regrew). All I can find in the USA are 1-patient case studies. The biggest study I've found is out of Israel, presented at a conference. All 12 patients had tumor shrinkage and bone regrowth. 10 had already changed course of treatment from radical resection to jaw preservation surgery. The remaining 2 were expected to do so as well.
Nobody knows what will happen in 5, 10, 15+ years. There are definitely risks to pursuing this approach. Personally, I believe the risks are worth it, especially since my dentist has started routinely doing panoramic Xrays and should catch any recurrence early (that's how my current recurrence was caught).
Every step forward seems to take forever, unfortunately.
Thanks a lot for sharing… I really appreciate it!
We first knew about it a month ago .. I have zero knowledge about it… This group really help me to understand what Ameloblastoma is all about and also about the jaw resection.
Hello @city. Ameloblastoma is rare indeed. A tumor which cannot spread to other parts of the body yet can return to the original site is not medically considered a cancer. So the good news is that Chemo is not necessary and would serve no purpose. But it is still a tumor which grows and must be removed to stop it. And what caused it in the first place? I wish someone would figure that one out. In the Head and Neck Cancer group we address Ameloblastoma because the location and surgeries are often related.
There are others here who have gone through Ameloblastoma care including @anbar04 who is not much older than your daughter and I believe should be in surgery recovery currently. Others may chime in soon as well.
Research (on respected sites) as much as possible so you can be the best advocate for care. Don't hesitate to ask the doctors and nurses any and all questions. In the meantime, let's keep the conversation going when you have a chance.
Best of luck with it @anbar04 !
Hi @anbar04 … How's your situation now… Please share your experience when you recover from the surgery… Really appreciate if you can share
@anbar04 I hope that your surgery today went well.
Thank you guys for all the messages! However, my surgery today got cancelled due to an emergency in the operation before mine I went to the hospital and I was there for 4 hours before being sent home. They are rescheduling for Saturday so it’s a massive waiting game for now
Nothing like living on pins and needles for another five days. Hugs kiddo. You will be alright.
Well, once you have it – please don't feel obligated to post here immediately unless you really want to. We'd all like to know, but your recovery comes first.
Hey, @anbar04 – I hope things went well with your surgery last Saturday.
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