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TM111 Offline OP
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Hello world,
I have a long history dealing with Clear Cell Odontogenic Carcinoma tumors in the upper jaw with multiple reoccurrences for the better part of my adult life unfortunately (since I was 24). It is a super rare one, with only about 250 cases known world wide ever. If you have seen or heard anyone on this board or else where with this type of rare cancer, please reply below or send me a message. I am in desperation to get in contact with someone that has/had it or is an expert on it, or has some experience with it. Thank you all so much!

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Dear TM111,

I’m sorry to hear that you have been dealing with this rare condition. I did a quick search of the forum and other posts on “clear cell odontogenic carcinoma” did not turn up. So, it’s likely that it has not been discussed on this forum. We are a group of patients and caregivers and while we have, among us, a lot of experience dealing with oral cancer, none of us is a medical researcher or professional.

Where are you being treated and what kind of treatment have you had? If you could be a bit more specific about what kind of info you’re looking for, maybe someone among us can respond.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Nov 2018
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TM111 Offline OP
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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." frown

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. smile

Last edited by TM111; 11-07-2018 08:56 AM.
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I see you’re from Toronto, so am I. My husband was treated at Princess Margaret Hospital.

I think it’s a positive step to have an appointment to talk to your doctor about the new spot. It’s true that radiation has side effects, however, it depends on the dosage you are getting. So, if radiation is ever suggested, do ask the doctors about how many grays (unit of radiation) you will be getting and what the possible side effects are. They should be able to tell you. If you are worried about the radiation getting too close to your eyes, I can tell you that the radiation is very precise. In fact, they do a simulation session prior to radiation starting to check that it hits the spots it is supposed to and no more. So, they won’t hit your eyes by mistake.

Another point I would like to bring up is maybe you can ask your doctor next week when you see them if you can transfer to Princess Margaret Hospital — that is, if you can travel to PMH easily or treatment and the transfer is something you want. The reason i’m suggesting this is that PMH seems to have a larger Head and Neck Cancer Department with top notch surgeons and doctors/researchers. I am, however, by no means saying that Sunnybrook is less good, it has a very good reputation as well. We chose to go to PMH when my husband was diagnosed because he was diagnosed by doctors at Mount Sinai Hospital and he was automatically in line for treatment there. Of course, I don’t even know if our medical system allows you to transfer to PMH even if you prefer going there.

The other possibility is to find out from your doctors at Sunnybrook if they will let you do a consultation with the doctors at PMH, or if they themselves will consult with the doctors at PMH. Who knows, maybe there is someone at PMH who has seen this cancer before and knows what to do with it.

All this you can find out by talking to your doctors at Sunnybrook. I am all for patients being proactive and advocate on their own behalf and your case, it seems to me, is one of those where you can benefit by talking to the doctors at length. Good luck and do keep us posted about your treatment so that we can all learn more about this rare cancer.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.

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