Thank you for your reply. Yes it is very hard to find information. Here is a quick summary of my voyage so far:

Had a tumor removed from between my teeth in 2003 when I was 24. Along with the tumor, two adjacent teeth were removed and some bone was scraped (this tumor invades the bone). Got the bad news however on biopsy: Clear Cell Odontogenic Carcinoma (CCOC).

At this point in my life I was baffled on what to do. Docs recommended a resection (maxillectomy). I denied further treatment based on some of the research I had done. Basically up until the late 80's it was considered a benign lesion but with locally aggressive reoccurrences. However as time passed by I guess docs started noticing some metastasis and then it was reclassified as a carcinoma. Head & neck CT scan was clear. I decided to roll the dice.

So having denied initial further treatment in 2003, I had no reoccurrences for 13 years! I thought I was in the clear, and I thought my dice roll paid off! I was so happy with just having 2 teeth missing and a small defect! No problem.

Then in 2016, I noticed a small bump near my defect. Sure enough, it was removed and biopsied, and again CCOC. Devastated. Docs again recommended a resection, and I though to myself: well if it lasted 13 years the first time, maybe it will last even longer now or forever. I again refused further treatment.

Again in Jan of 2018, a small bump appeared in the same area as in 2016. Head, neck, & chest CT scan showed "enhanced soft tissue" in the area of my concern but was otherwise clear (ie: lymph nodes, lungs etc). This time I was getting serious and would go ahead with their recommendation of a resection. Took forever bouncing around the medical system, but in June of 2018 I had a partial maxillectomy at Sunnybrook hospital in Toronto. The surgery went well, soft tissue biopsy done at the margins during surgery were clear. However after waiting a month for final margin results, the bone margins were not clear or were very suspect. Ugh, devastated again. This was suppose to be a "one and done" surgery as the doc called it. But here we go again...

So being such a rare and complicated case, my surgeon oncologist, put my case on the tumor board and sure enough the options were more surgery (wider resection) and radiation, or just radiation. However, basically the oncologist surgeon said "Basically at this point we just don't know. We don't know what will or will not work, and with another wider surgery and radiation, we may be overtreating you at this point". So for now I chose the route of monitoring with a CT scan scheduled in Jan 2018.

Since the surgery in June 2018, the healing was super fast and well. I think I had no pain just after a week and after a month everything healed up 100%. However since I was able to poke around now a month after surgery, I always felt this small tender spot at one of the surgical margins. I brought this up with the docs on all my follow up visits, but they just chalked it up to, "well its too early to tell since it's only "x" number of months after surgery" However as I sit here writing this, a few days ago I discovered that small tender spot now as a small lump which I do not believe was there before at one of the surgical bone margins. The sensation when I touch it is very similar to that of the previous tumor growths I had when I would touch them. So of course I am convinced that its back again, which seems very probable. Everyone keeps telling me, not to worry, etc, etc...but I've been though this many times and let's just say I'm convinced its back because of my experience with feeling that "tumor sensation when poked."

I have an appointment next week to get it checked out.

So yea, basically I was hoping to find someone else who's had this super rare CCOC and see or listen to their story and what worked and what didn't. Worst case scenario right now is a 2nd wider resection, which is going to be even worse then the 1st with a much larger defect and radiation, which I hear can have some very serious and long lasting side effects when targeted in the mouth. Also it is not known if radiation will work against this type of tumor, because again the lack of experience and knowledge with this particular tumor. That's my biggest fear is I give this radiation a try and it doesn't even work, yet gives me all the bad side effects. Plus now we are getting close to my eye as well. Its so hard to make these decisions, when the outcome is not known either way and there is no real documented history of the disease.

Thank you for listening to my story, I appreciate any and all replies.