Diagnosed with Ameloblastoma

@tomschwerdt again for all the insight you've provided. It definitely helps us feel a little more in control of of uncontrollable situation, as far as knowing what the options are and hearing everyone's experiences.

The doctor said he thinks there is a 50/50 chance of reoccurrence. I sent a message to see what his doctor thinks about genetic testing and other treatment options.

Wow! Desmoplastic ameloblastoma is a rare variant of an already very, very rare tumor! I was diagnosed with the unicystic variant both times.

If (when) it comes back, I highly recommend getting genetic testing of the tumor to see if there is targeted therapy available. I'm not telling you to do the targeted therapy, just that it's important to know whether it is a viable option. After that you, your son and your doctors need to find the best choices for your (his) particular situation.

My personal concerns about resection are largely about long-term or permanent loss of function both from a structural perspective and from a functionality perspective (permanent nerve damage).

@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.

@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!

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

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.