1. < Head & Neck Cancer

Diagnosed with Ameloblastoma

Posted by caw @caw, Nov 9, 2021

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.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Nov 22, 2023

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.

REPLY
1 reply
Tom Schwerdt | @tomschwerdt | Nov 22, 2023
In reply to @anniecl "-We lived in Menlo Park and I worked as a nurse at Stanford for over 20..." + (show)
@anniecl

-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

Jump to this post

Hey, Annie!

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.

REPLY
anniecl | @anniecl | Nov 23, 2023
In reply to @colleenyoung "@anniecl, you might reconsider Mayo Clinic in Florida. All Mayo Clinic locations use the same collaborative..." + (show)
@colleenyoung

@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

Jump to this post

Thank you.
-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.

REPLY
1 reply
anniecl | @anniecl | Nov 23, 2023
In reply to @hrhwilliam "Hi @anniecl Thought I would jump in for a brief moment. It would certainly be worth..." + (show)
@hrhwilliam

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.

Jump to this post

Thanks so much. My thoughts exactly!

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 25, 2023
In reply to @anniecl "Thank you. -I contacted Mayo in Jacksonville again and spoke with the head and neck surgery..." + (show)
@anniecl

Thank you.
-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.

Jump to this post

@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.

REPLY
kkd | @kkd | Nov 27, 2023
In reply to @anniecl "-We lived in Menlo Park and I worked as a nurse at Stanford for over 20..." + (show)
@anniecl

-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

Jump to this post

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.

REPLY
Tom Schwerdt | @tomschwerdt | Dec 4, 2023

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.

REPLY
Tom Schwerdt | @tomschwerdt | Dec 21, 2023

Checking in with my Ameloblastoma peeps - hope everyone is doing well! Feel free to post updates if you are up to it.

Happy Solstice!

REPLY
1 reply
anbar04 | @anbar04 | Dec 21, 2023
In reply to @tomschwerdt "Checking in with my Ameloblastoma peeps - hope everyone is doing well! Feel free to post..." + (show)
@tomschwerdt

Checking in with my Ameloblastoma peeps - hope everyone is doing well! Feel free to post updates if you are up to it.

Happy Solstice!

Jump to this post

Hey guys, I hope you’re all well and finding lots of peace and clarity within this period! My ameloblastoma journey has been really odd, I had the free flap from the bone in my shoulder blade and now four months down the line the bone has failed so today I got the bone all removed and now I have to wait for the site to fully heal and then go from there so it’s all over the place as of now but I’m happy and forever grateful I’m in this position and I have learnt a lot and definitely become a better person because of this up and down journey. How is everyone else doing?

REPLY
3 replies
Tom Schwerdt | @tomschwerdt | Dec 21, 2023
In reply to @anbar04 "Hey guys, I hope you’re all well and finding lots of peace and clarity within this..." + (show)
@anbar04

Hey guys, I hope you’re all well and finding lots of peace and clarity within this period! My ameloblastoma journey has been really odd, I had the free flap from the bone in my shoulder blade and now four months down the line the bone has failed so today I got the bone all removed and now I have to wait for the site to fully heal and then go from there so it’s all over the place as of now but I’m happy and forever grateful I’m in this position and I have learnt a lot and definitely become a better person because of this up and down journey. How is everyone else doing?

Jump to this post

Just keeping on keeping on - the tiredness/lethargy from the targeted oral chemo is pretty much gone now that I've been on Synthroid for awhile. Other than that - I'm about 4 weeks away from my next followup, and about 8 weeks away from my next imaging followup. Hoping it shows shrinkage, but continuing at stable is still a win for me.

So sorry to hear that your bone transplant didn't take. I hope they figure out a good approach for you going forward!

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