Diagnosed /w Ameloblastoma. Young Adult

Hi @meadowj You found the right group. Welcome. There are people here who have also had this rare tumor known as Ameloblastoma. And I know of one who is younger than you who went down a very similar path and is doing well.
Give this forum a little time and others will pipe in. In the meantime, ensure your "cancer institute" has experience specifically with Ameloblastoma, and also with reconstruction if necessary. This is no time for learning or trying, it is do or not do. There are facilities world wide with experience and success in this situation, so please don't hesitate to ask. You should have the best.
If I don't see responses from our Amelo people in the next couple of days, I will prompt them to check in with you. In the meantime just enter Ameloblastoma in the search box at the top of the page and you will find discussions about this. As for me, I didn't have the tumor but I did have the rebuild surgery that often is used in severe cases of Ameloblastoma.
I understand scared and numb. Particularly at your age, nothing bad is supposed to happen. But here you are. This time next year you will have a great story to tell. And as we like to say, scars make better stories than tattoos. For now, brakes on full from a normal life. Better days ahead. Above all: Courage!

I love William’s comment. “This time next year, you will have a wonderful story to tell.”
Praying you find God’s peace in this trial.

You ARE in the right place! This platform is a Godsend. My husband had a very painful cancer last year, which he is now on the other side of and feeling great.
I would wholeheartedly encourage you to ask questions and get a lot of advise from these amazing, caring cancer survivors. Good luck to you. You’ll be great💕

Thank you so much to everyone steadily replying to me. I joined this Monday, so this website is quite new to me. But I am feeling better about the current status of what's happening. There was some conversation about a 'fibula-free flap' if it comes to that, will this effect me for exercising or even jobs that need me to stand constantly? And since its the jaw, could I still work at the job I work at now? It's very talk-oriented. Talking with my surgeon will help, but any answers or advice is extremely appreciated. Bless you all.

If your job is very talk oriented, I would talk to you surgeon about if he/she thinks a swallowing/speech therapist may be needed. God Bless and good luck with your journey.

Fibula Free Flap, my favorite! Been there, done that. Your worries about standing, walking, exercising were exactly my thoughts as well four years ago. I was back on my feet within a few weeks and walking without difficulty. Standing on one leg is still nearly impossible. On the other hand, my engineering job at the time had me on my feet nine hours per day and walking roughly five miles per day. Like you I worried but found it was not much of an issue.
You likely will have some odd nerve sensations for a year or two in your leg and foot. You also end up with a really cool scar, about 100+ stitches which probably should have a zipper tab tattooed on one end just for laughs. The jaw and mouth will also have nerve issues for a while. For me, I have had issues with my prosthetic teeth rubbing on my ever growing gum tissue. No other issues.
Make sure, and I can't stress this enough, make sure the team that does the Fibula Free Flap surgery has many under their belt, not reading it from a text book. You must ask them and the number hopefully is greater than fifty. This is a relatively newer surgery where just four years ago was done only in a handful of clinics in the US and two in Europe. Mayo, Rochester has trained teams in this procedure from around the world. Perhaps you might consider having this done either at Mayo or a clinic they have worked closely with. It is your life and your body and we hope it lasts a long-long time.
When and where is this scheduled (if you wish to share)?

Thanks, William!

This information was given to me last Friday, so right now, we're in the stage of CT scans, and seeing how much exactly is needed to be done for the area. So there isn't a time just yet. I will however possibly give more updates here as time goes by! For now, I am waiting for all the "fun insurance talks" to be confirmed, and I will give an update here when I can. You made me feel much better about this including everyone else giving their affirmations. The surgeon who gave me my consultation said that he has done this numerous times a year; I believe several every 2 months. I'm going to ask more questions to him and hopefully meet his team.

Hi, @meadowj !

One good thing about ameloblastoma is that it is almost always a SLOW growing cancer. Please take the time to figure out your options and find the right treatment for you.

If you don't mind sharing - is your ameloblastoma in the mandible (jawbone)? Mine is, and around 80% of mandibular ameloblastomas have the BRAF V600E mutation. One cell in my jaw got that mutation at some point, and grew into a tumor.

My ameloblastoma was first diagnosed in 2007, spotted on a dental X-ray, then referral to an oral surgeon. The surgeon wanted to do radical surgery like yours - because surgeons do surgery.

Instead, I opted for a conservative surgical approach (enucleation and curettage - basically "scrape out everything, but leave enough to maintain a jawbone"), with the understanding that it increased the chances of a recurrence. Not that the radical surgery had THAT much lower chance of recurrence (based on the scientific literature at the time). While being slow, Ameloblastoma tends to send out sneaky tendrils fairly deep into surrounding bone.

2023 - another dental X-ray found the recurrence in my jawbone. I was again referred to an oral surgeon who wanted to do surgery, because surgeons do surgery. Radical resection and fibular flap was the recommendation. Because I'm not comfortable with the rather significant chance of lifelong loss of capability (morbidity) from radical surgery, I looked for other options.

I (with a lot of support/help) researched the modern medical literature again and found that there is now an alternative. Targeted chemotherapy specifically targeting tumors with BRAF V600E mutation. The therapy was developed for other cancers with that mutation because ameloblastoma is so rare.

I had my PCP/GP give me a referral to MD Anderson, went through their process, was clear about my concerns over radical surgery, and was put on the targeted BRAF chemotherapy: 5 pills a day. There are now multiple ameloblastoma patients at MD Anderson using this treatment.

I'm definitely happy with my choice. The pain went away within days of starting the chemotherapy, and the tumor has been (very) slowly shrinking. It hasn't been a total picnic - I was super tired early on and had to go on thyroid hormone replacement (synthroid) - so I guess technically it's 6 pills a day.

Radical resection and fibular flap very likely means you would need significant physical therapy for eating, drinking, speaking and using your leg where they source the bone/muscle/etc. You may never regain nerve function on that side of the jaw area - I had a numb cheek, part of my lip, tongue, etc for months after my conservative surgery. It likely would have been permanent if I had agreed to the radical surgery.

I've since met (or "met") two people who had a rejection of their radical resection and fibular flap. One in person at MD Anderson, one online here. The one at MD Anderson was very hard to understand - her husband translated most of the time. @anbar04 - if you're still around, could you share your experiences with that surgery and the challenges afterward? You are also closer in age to @meadowj

I'm not here to tell anyone what to choose - I'm just sharing my experience and choices.

Personally, I would really like to see the "standard of care" as something more like treatment of more common, faster growing cancers: Conservative (jaw preservation) surgery to cut out the main tumor followed by targeted chemotherapy to kill off any scraps of tumor remaining.

Lots more information/discussion in the prior Ameloblastoma thread, if you have interest: https://connect.mayoclinic.org/discussion/ameloblastoma/

Hi Meadow. I’m mom of a 25 year old guy who was diagnosed with ameloblastoma almost 2 years ago. His dentist saw something on a routine X-ray so took a CT and referred my son to an oral surgeon who was confident this was a “routine cyst” and they would just scoop it out. They were quite surprised when the pathology report showed amelo. My son was referred to a local head and neck surgeon in Orlando, FL where he lives. The H&N surgeon suggested surgery with a FFF within 6 months. I’m a nurse with about 40 years of experience in university medical centers in California and Iowa both inpatient and the clinics side of the “house.” I’ve been a bedside nurse and a unit manager. So I knew that a VERY experienced surgeon and surgical team, ICU nursing staff, floor nursing staff, physical therapist, etc. would be critical—where EVERYONE had cared for patients with this rare disease undergoing this type of extensive surgical procedure. I found Mayo-connect and an amelo Facebook group and asked many people where they had or were having their surgery. I called our insurance company (the 1-800 number on the back of your card), and asked about coverage for 2nd and 3rd opinions and for surgery done outside of our home state I called many medical centers around the country and looked at their websites to see if they had experience with this disease and procedure. I questioned my local dentist, my son’s childhood dentist and the oral surgeon who removed his wisdom teeth several years before. They offered names of hospitals and surgeons, but when I investigated I found none really had the necessary experience I was looking for. Many admitted they had heard of amelo but had never had a patient with it. We went to Mayo and saw Dr Arce (a name well-known in the field) and to Stanford, mostly b/c my nurse friends in the area could help my son (and I), with his recovery. We were very impressed with the Mayo experience and a “watch and wait” approach that was suggested. Their entire team has done hundreds of these surgeries. The surgical time is minimized by having one team working on the jaw, while the other team is working on the leg. They can place implant posts during the surgery which makes placing artificial teeth after healing much easier. And also less costly to the patient. If posts are placed months after the initial surgery they fall under dental insurance and are considered cosmetic—so reimbursement is much less— meaning you will pay for most of it. The Stanford surgeon had much less experience and the care seemed fragmented with someone in local private practice who would do the dental replacement surgeries several months later. He wanted to operate right away.
We decided to continue with Mayo where my son is having every 6 month video visits with Dr Arce where they review CTs from his local Orlando dentist.
This is a very supportive and knowledgeable group. Don’t hesitate to ask us any questions you have. Or to ask what you should be asking or considering.
Best of luck to you. We’re here to help.

@meadowj

Hey, feel free to stick around, ask questions, talk about options you've discussed with your healthcare providers (or whether you want to find a different one), etc. It's hard to find folks who are also dealing with ameloblastoma - even the National Organization for Rare Diseases (NORD) doesn't have much.

Keep in mind that this is usually a VERY slow growing cancer and it rarely metastasizes. You have some time to figure out a course of action - don't get rushed into surgery. Doctors are used to dealing with fast-growing cancers, so they often want to schedule surgery quickly.

Of course, staying calm and considered is easier said than done. I know that when I knew my ameloblastoma was back - I was darn anxious to get treatment going.

Realistically speaking - getting my ameloblastoma tumor scraped out (while keeping my jaw) bought me ~15 years before I had to deal with it again. It was big enough that I lost 2 teeth, almost 3. I'm not saying to ignore yours for that long, just trying to help you from feeling rushed. Taking 6 months, 1 year, 2 years before treatment - it's unlikely to be a problem. Though I would be sure to get an appropriate X-ray at least once a year.