Diagnosed with Ameloblastoma
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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Hey @anbar04 ! William mentioned you, so I thought I would reach out.
I hope you make the right decision for you. I totally feel you on the overwhelmed and scared – I'm right there with you and I'm nearly 50. There are no local (or even local-ish) discussion or support groups near me, which is how I ended up here!
When I had my first ameloblastoma in 2007, I pushed for and got the less radical surgery, along with a bone graft from further back in my jaw and dental implants. I then did pano X-rays for 5 years and was pronounced cured. The ameloblastoma has probably recurred (biopsy scheduled for May 30th to confirm). I don't regret going with the more conservative surgery, I only regret that I didn't keep having an annual pano X-ray to catch the recurrence earlier.
In the meantime, there is some really useful looking research on targeted drugs (see above for details)
That said, as far as I can tell there isn't anyone routinely administering a drug treatment for ameloblastomas yet.
I'm sorry you are going through this. In my case, the tumor was already so large and had penetrated through the mandible, a conservative approach wasn't an option for me. I would be curious to hear what my surgeons have to say about the BRAF therapies. I'll have to ask when I go for follow up this fall.
Hey @caw @colleenyoung
Just joined the community today. Being such a rare tumor, it's hard to find a place where you can have a good discussion with people who understand. Hope it's not too much of an info dump below:
My original ameloblastoma diagnosis was in 2007. Even getting a diagnosis from the biopsy took forever. The oral surgeon initially wanted to perform a resection and titanium plate, we settled on removing the tumor and as much margin as possible while keeping the basis for a normal mandible. Lost 2 teeth. After initial healing, had an autologous bone graft (from far back on my mandible, behind the last tooth), followed by 2 dental implants. After 5 years of followup panoramic X-rays I was pronounced "cured" and told I didn't need to keep up with the panos.
Looking back, that was a mistake – I should have pushed for an annual pano. Based on the pano I had at my dentist a couple of weeks ago, it's very likely back – but in two locations. I still don't regret having conservative surgery, but if the regrowth had been caught sooner/smaller it would have been easier to deal with.
Consulted with an oral surgeon already, now waiting to get the biopsies done and a confirmed diagnosis.
I've asked for genetic screening of the tumor – it appears that the majority of mandibular ameloblastomas are associated with the BRAF V600E mutation, and there are FDA approved drug treatments for some BRAF V600E initiated tumors: combined Dabrafenib-Tratmetinib. Unfortunately outside some very limited studies, nobody seems to be taking drug treatment approach. US studies have basically been 1-patient case studies. Biggest study I could find was 12 patients in Israel. Literally 100% of them had significant tumor shrinkage within 8 weeks. 10 of them had switched from a planned resection to jaw preservation surgery – and the other two were not far behind, likely to switch as well.
It seems to me that there really should be more effort in taking an oncology/drug approach to treating ameloblastomas, rather than an approach of pushing for radical surgery as a first line treatment.
– BRAF inhibitor: a novel therapy for ameloblastoma in mandible https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6328504/
– BRAF-targeted therapy for locally advanced ameloblastoma of the mandible: A potential neoadjuvant strategy. https://ascopubs.org/doi/abs/10.1200/JCO.2022.40.16_suppl.3149
– FDA grants accelerated approval to dabrafenib in combination with trametinib for unresectable or metastatic solid tumors with BRAF V600E mutation https://www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-accelerated-approval-dabrafenib-combination-trametinib-unresectable-or-metastatic-solid
I admit, the full resection scares me. Oral surgeon was already talking about removal of nearly the entire left side of my mandible, fibular flap, etc.
My daughter-in-law who was just diagnosed with angiosarcoma of the scalp had her first radiation treatment today 4-4-23. Unfortunately, they had to stop the treatment because they gave her paclitaxel that caused a severe allergic reaction along with hot flashes and a very rapid heart rate. They are waiting to see what the doctor is going to suggest. Has anyone else experienced this?
Thanks for clarifying and asking @anbar04. Please contact email@example.com the leader of the AYA support group. She is expecting your email. 🙂
Would I still be able to join the young adult support group when though my tumour is non-cancerous?
That’s ok I have been really busy lately as well. I think now that I know what procedure I have to undergo I do feel a bit panicked over everything that will happen, did the scars take long to fade. I am however excited to shut down nosy people! I think a fish head tattoo would be really cool as well. Thank you for the support I know I will be ok it’s just about getting there!
Thank you so much for all the support and the welcome, i appreciate it more than I can ever express on text. They decided to do a full jaw reconstruction with the fibula free help in June after my exams. I feel nervous but also relieved that I know which direction I am heading in, I think I just feel quite scared.
Sorry for the delay in getting back to you. My scar, although about six inches long, is not really noticeable unless I turn my head away from the observer. I do also have a bit of a tissue lump under my chin. At my age and for what I have been through I really don't let it bother me. I am who I am on the inside and as long as I don't gross people out, it's all good. Now of course the leg scar where they got the bone implant from is a nice long zipper line which occasionally draws comments at the beach or golf course. I have toyed with the idea of getting either a fish head tattoo or a zipper pull tattoo but for now I simply say to the curious when asked "just don't swim with sharks." That usually puts a stop to such personal invasion. Still working on the bugle.
I hope all goes well with you. In the end you should be far better off and that is what really matters. You have a long life ahead and you should have the best life you can. Good luck.
Hi @anbar04, I'd like to add my belated welcome. I love the support you've found with @hrhwilliam and @caw. Being diagnosed with cancer is tough, but at 18 years old really sucks.
If you would like to connect with other young adults dealing with cancer, you can also join this support group on Connect:
– Adolescent & Young Adult (AYA) Cancer support group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/
There is also a monthly Zoom support group you might be interested in:
– YA, Me Too: Young Adult Cancer Support Group Meeting https://connect.mayoclinic.org/event/aya-adolescents-and-young-adults-support-group-3/
The group meets the first Thursday of the month and next meeting is April 6.
What was the decision that you made with your team? Will they do the jaw reconstruction or take the tumour out and put in a metal plate? How are you feeling?