Diagnosed with Ameloblastoma

@tomschwerdt Thank you so much for sharing the information and the study! I’m going to forward it to my son’s oral surgeon to see what he thinks and whether it might lead to a referral for further treatment options.

We had a post-op visit this past Friday, and they informed us that he has a desmoplastic ameloblastoma. They explained that it’s a more aggressive type, and they’ll be monitoring him every 4-6 weeks for any signs of recurrence. They said there's about a 50/50 chance it could come back. If it does, they may need to do a small resection, possibly taking bone from his leg to reconstruct his jaw.

I also want to express my deep appreciation to everyone who has shared their experiences and information during this difficult time. Your support has been incredibly valuable and comforting as we navigate this journey.

Thank you all again.

Hey, @lesleylbrown

Ameloblastomas are usually benign. My understanding is that they used to be classified as a cancer, and were reclassified because of they are usually benign. "Benign but locally aggressive" is how it was originally described to me. Uncontrolled growth of cells, destroying healthy tissue locally.

However, in a small percentage of cases ameloblastoma can metastasize (invade other parts of the body) - which is the hallmark of a tumor being a cancer instead of being benign.

My understanding is that in the times it does metastasize, it's usually an ameloblastoma which has been allowed to grow enormous without treatment.

However, to know this you have to dig deep into the topic.

Most doctors will never encounter an ameloblastoma in their career. Even many oral surgeons won't ever encounter one - and oral surgeons are the ones treating the vast majority of ameloblastomas which get treatment. Dentist discovers it, refers you to the oral surgeon, who performs the standard treatment of surgery. Virtually no oncologists ever see ameloblastomas, so why would they know much about them?

Expect that the standard pathologist will end up unable to decide if it's ameloblastoma, then refer the biopsy analysis to a specialty pathologist who will take a month or more and several reminders to finalize the report. At least, that's how it happened for me both times.

Now, for the good news: It sounds like the growth/tumor/whatever was relatively small. If it is an ameloblastoma - they usually grow pretty slowly. My original tumor was removed with relatively conservative surgery (enucleation and curettage) and it was ~15 years before it showed up on a dental Xray.

In those intervening 15 years, it was determined that ~80% of mandibular (jawbone) ameloblastomas have the BRAF V600E mutation, and the FDA approved a drug treatment for tumors with that specific mutation.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/braf-mutation-and-cancer

@tomschwerdt I would definitely be interested to read your argument about the misclassification of ameloblastoma being label a "non cancer". Is there a specific time frame I can search for this information within the forum? Also, I am very interested to get a referral to MDA. I'm hoping I can get approval for this as he does have medicaid for insurance.

And thank you and @anbar04 for the advice on the surgery!

Just an update on what's been going on-

We were initially told that he had an ameloblastoma in the middle of his lower jaw, which, from what I understand, is an unusual site for this type of tumor. After that, we were referred to UTMB, where the oral surgeon suggested that it was just a cyst. We felt a lot of relief when a CT scan also noted it as a "cystic lesion."

Yesterday, we went in for surgery to remove the cyst and the adult tooth that was believed to have caused it. However, after the surgery, the surgeon informed us that it does look more like a tumor after all. So, we're back to square one with the tumor diagnosis, and it has been sent off for a biopsy.

I’m trying to stay hopeful, but I’ve read that ameloblastomas can sometimes appear benign under the microscope, even when they aren't technically benign. Does anyone know if that's true? Also, my son is quite young to have developed this, and the location of the mass seems a bit unusual. Because of these anomalies I'm quite worried about the type of ameloblastoma we are dealing with.

That being said, we’re grateful that the mass has been removed, and an extra adult tooth was saved during the surgery. He’s less than 24 hours post-op and is doing really well. His pain is being managed, and he's recoveringtomschwerdt for the advice on the surgery!

Just an update on what's been going on-

We were initially told that he had an ameloblastoma in the middle of his lower jaw, which, from what I understand, is an unusual site for this type of tumor. After that, we were referred to UTMB, where the oral surgeon suggested that it was just a cyst. We felt a lot of relief when a CT scan also noted it as a "cystic lesion."

Yesterday, we went in for surgery to remove the cyst and the adult tooth that was believed to have caused it. However, after the surgery, the surgeon informed us that it does look more like a tumor after all. So, we're back to square one with the tumor diagnosis, and it has been sent off for a biopsy.

I’m trying to stay hopeful, but I’ve read that ameloblastomas can sometimes appear benign under the microscope, even when they aren't technically benign. Does anyone know if that's true? Also, my son is quite young to have developed this, and the location of the mass seems a bit unusual. Because of these anomalies I'm quite worried about the type of ameloblastoma we are dealing with.

That being said, we’re grateful that the mass has been removed, and an extra adult tooth was saved during the surgery. He’s less than 24 hours post-op and is doing really well. His pain is being managed, and he's recovering!

Good luck! Let us know how it goes! I'm definitely interested in which medical oncologist you see and how the meeting goes (feel free to switch to PM.)

Meeting with MDA Medical Oncology tomorrow. Expect I’ll get treatment plan options soon after.

Thanks for the check-in! Hope everyone else is doing well.

@erikm, how are you doing? Have you met with all the specialists and landed on a treatment plan?

Thanks, Colleen! I now remember that I had asked the question about access but ended up just waiting the few days. Time flies!

To simplify something from above:

If you are considering targeted therapy, I am willing to share my MD Anderson medical records with your doctor(s). Contact me privately and we'll figure out how to make it happen.

Welcome, @erikm. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post the journal article for you:

- Anti-MAPK Targeted Therapy for Ameloblastoma: Case Report with a Systematic Review https://www.mdpi.com/2072-6694/16/12/2174

Thanks for tipping me off, @tomschwerdt. Waving "hi" and getting out of the way of this helpful and supportive discussion.

One thing which surprises me a bit is that when I went to MDA, I only had to meet with:

Head and Neck Surgeon
Dentist
Medical Oncologist

Admittedly I showed up with stacks of printouts (Globally sourced research, FDA approvals, etc), was very clear that I had a science/research background and that I was very uncomfortable with the "standard of care" surgery. I believe I also mentioned that I had been emailing with a researcher in Korea who was starting a clinical trial for this particular targeted treatment for mandibular ameloblastoma with the BRAF V600E mutation. I suppose the other difference is that this is a recurrence for me since I declined radical surgery ~15 years ago. Conservative surgery got me 15 years, and in the meantime an appropriate targeted treatment was developed.

If anyone else ends up going to MDA for a consultation and it would be helpful, please feel free to contact me privately about sharing my medical records with your care team. In a few weeks I will hit the 1 year mark on targeted treatment, and it has been steady progress with the tumor shrinking/bone regrowth. Side effects have been under control for quite awhile now.

Now that I think about it, I can likely share the records with your care team at Mayo or wherever you end up going.

I believe this is the paper @erikm wanted to post: https://pubmed.ncbi.nlm.nih.gov/38927880/

In poking around, I found a relevant research study in North Carolina which is currently recruiting: https://clinicaltrials.gov/study/NCT05868629

@colleenyoung - Could you enable permissions for @erikm to post links and such? I seem to recall you did that for me early on.

Hello all- (sorry for the lengthy post)

Want to thank you all for sharing your stories. You are all inspiring! I’m the “third person” that @tomschwerdt mentioned re: targeted therapy at MD Anderson. I live in Seattle, but after doing a lot of research, chose to get treated at MD Anderson. My journey sounds very similar to the others here:
- Dec 2023 - Jan 2024: Loose tooth in right mandible (I’m missing a few teeth naturally, but it was 3rd molar) and started as minor pain like a bad cavity or tooth infection, slowly getting worse- no noticeable swelling.
- Apr 2024: Went to dentist - got standard dental panoramic x-ray and the look on her face was clearly concerned - she referred me to an oral surgeon.
- May 2024: Went to oral surgeon and had the tooth extracted and biopsy / tumor removed. The oral surgeon was also concerned with what he saw. Immediate pain relief, even before wound was healed. Got biopsy results within a week diagnosed as ameloblastoma. Referred to an Oral Maxillofacial Surgeon. Nerve damage from the tumor removal resulted in lower right facial numbness - have since recovered about 80% of sensitivity.
- Jun 2024: Met with OMF surgeon. I really did not like his bedside manner. I had done a lot of research and already knew that “radical resection” was considered the standard of care and was prepared to do it. But it became clear to me that he was looking at surgery as the only option. This makes so much sense to me now - classic hammer / nail situation. Since he is a surgeon, the only option was surgery. He told me that my research on BRAF targeted drugs was a waste of time and if I wanted to try that, I could call around to other doctors until someone said yes… I just wanted to have an open minded discussion about all the options - but he was the biased party, not me…
Jul 2024: Went back to my oral surgeon and asked for a referral to University of Washington. Since they are a research hospital / medical school, I thought I would get a more objective evaluation. They also started with surgery as the “standard of care” strong recommendation, but agreed to review my research and reexamine my biopsy sample for BRAF mutations. After sample was confirmed positive for BRAF v600 mutation, I was referred to UW Hutchinson Cancer Center / oncology.
- Aug 2024: While waiting for UW to call me to schedule a consultation, I did additional research and found @tomschwerdt ’s postings on a different forum. This led me to contact MD Anderson. MDA called me back within 48 hours and had me scheduled before I even heard from UW. My confidence in MDA is very high as they are the number 1 rated cancer treatment center in the US.

That leads to this week. After tomorrow’s appointments, I will have met everyone related to the surgical option:
- Head & Neck Surgeon
- Head & Neck Radiation Oncology (contingency only - not likely to have radiation therapy)
- Head & Neck Plastic Surgeon (they are responsible for harvesting the fibular flap and grafting it into the mandible)
- Oral Oncology
- Head & Neck CT
- Lower Extremity CT (bone donor site)

Next week:
- Medical Oncology (targeted therapy)

I will wait until I get the combined team recommendations from all the doctors and then evaluate / decide. But as @tomschwerdt mentioned, I would prefer a non-surgical approach. As I see it, ameloblastoma usually is relatively slow growing - so I can try the targeted (chemo) therapy and revert to the surgery if it doesn’t work.

BTW: Here is another medical journal article about BRAF targeted therapy: < < I’m not allowed to post links yet >> search google for “ameloblastoma raemy”
This patient was treated at the University of Lausanne in Switzerland and was a BRAF V600 positive young (teenage) female patient with good results. I spoke with Dr Raemy (lead author) and he also advocated for trying the targeted therapy first, monitoring, then only if necessary, reverting to surgery.