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Mucoepidermoid Carcinoma

danielsm
Posts: 3
Joined: Mar 2006

Hi, I just found out that I have Mucoepidermoid Carcinoma of the minor salivary glands. Low Grade.It was found on the base of my tongue.I'm getting the growth removed on 4/10/06. I have this feeling like something is caught in my throat all the time. My ENT doctor said that he doesn't know why I have that feeling. He all so said that he hasn't had a case like this before because it's rare. Has anyone out there had anything like this? Maybe you could let me know how you made out. Thank You, Marc

TracyLynn72
Posts: 839
Joined: May 2013

I just had surgery for MEC and actually started a post a couple of days ago.  check it out (I found this one first and didn't notice the dates!) 

sdavids109
Posts: 2
Joined: Jan 2017

Last year around April during a route dental cleaning, my amazing dentist found the lump in the top of the roof of my mouth. The lump never bothers me and I never felt it. Went back in December and was sent to another amazing specialist in Montclair, NJ. I went on lunch break to find out the results. SMH crazy how in a moment life would never be the same. I came on this website to find one story that would make me feel better about what I was going to go through and I never found one story that seems to close to mines. I was diagnosed with a low grade and survivor seem to be high. Went to NYU to see the specialist that would also do the surgery. He made my feel like I would walk away with my teeth. the surgery was last Thursday and the pain has been one for the books. 

the path report came back in record time with cancer free. I go for the follow-up and see what next. 

I caught this within a year and it was the scariest thing to go through but it does not have to be. 

LC2313
Posts: 16
Joined: May 2017

I was just diagnosed my self in Feb'17 and had Surgery 4'17. I have a pretty big hole and it's healing. They said MEC Low Grade and clean margins. I am still going through the healing process. My mouth is going through all kind of stages and I am a little freaked out but staying positive since they have clean margins (reported on the final pathology report on a 2 week follow up) and no other therapy is recommended at the time. Curious how your healing process is going or went? I might need a retainer they are calling it for my palate but it depends on the healing since I am only 1 month out of surgery. I was treated by the Rutgers group.... waiting for the next follow up to see what the Dr says.... Not sure what to expect during this whole healing process.

 

tommyodavey's picture
tommyodavey
Posts: 704
Joined: Nov 2011

Yes, you have one of those rare cancers that fall into the other 5% or so of DX's.  The most common site for MEC is on the upper palate close to the Parotid Salivary Gland.  It being a salivary gland cancer, that makes sense.  Mine didn't.  I had a tumor on the base of my tongue that stumped my doctor.  He said he couldn't find another case study to see how to treat me.  We opted for surgical removal of the tumor, (low grade with clear margins like you) a radical right neck dissection because it had spread to my lymph nodes, and then radiation because it had spread.  No chemo.  He said it wasn't effective on this type.  You caught yours earlier than me so that's why you had less treatment.  Great!

Medical science has come a long way with not having to get a prostetic for the roof of the mouth.  They can make a flap that is very functional.  It sounds like you didn't suffer from that so congratulations on having a clean bill of health.  If you have any other questions about MEC go ahead and PM me.  I'll be happy to share as much information as I know.  Like you said, there are only a few of us here and I mostly check in monthly to look for others like myself.

Tom

LeoS2323's picture
LeoS2323
Posts: 159
Joined: Mar 2012

Why is it so many cases of MEC seem to be unusual?

I was a fellow sufferer of MEC - in my case I had a neck lump but they couldn't find a primary, and when it was diagnosed it was MEC intermediate grade. I've actually just posted that I've had my 5 years all clear, and the primary never turned up. My doctor said MEC with my presentation at the age of 33 was like 'hen's teeth' and he'd never seen it before. I never had to have radiotherapy because we were waiting for a primary site which never appeared, but I had a neck dissection.

At least we aren't a boring bunch - we provide our doctors with interesting challenges!

And I also think we are kind of lucky that MEC seems to be quite beatable in general terms. Sounds like you and your doctors are well on top of things sdavids so I'm sure you will get throught it with flying colours.

Cheers

Leo

Oldman22
Posts: 1
Joined: Mar 2019

I have been reading about everyone's trials and tribulations dealing with this cancer. My hat is off to everyone.

Mine was diagnosed in 2016. I had a spot under the rear of my tongue that no one could seem to find anything wrong. A PA-C at an After Hours Care found it. Sent to and ENT and he almost didn't find it but finally did and did a biopsy. It turned out as cancerous and I went for a CT Scan. The surgeon felt it was a simple surgery. I would stay in the hospital a few days. He would put in a trach tube for a couple of weeks and a feeding tube. Surgery ended up going close to 10 hours and was a lot more complicated than anyone thought. It was apparently one of 100 cases known. I stayed 9 days and went home. With the trach tube I had to intake nothing but liquids. Ensure and another liquis that was covered under my insurance. The tube came out in three weeks with minimal problems. The feeding tube is still in place. I was never able to resume swallowing. That plus my left jaw was removed and rebuilt with my Pectoral muscle. I learned how to make all kinds of liquid food. My favorite is a pizza. I crush Cheez-it crackers to dust and mix a bloody Mary mix with it. Tastes similar. Of course wash it down with a beer and everything is OK. With scans every 2-3 months it looked like everything was going fine....until Christmas this year. Tumors were discovered on my liver and some new ones where the last were removed in my neck and possibly in my thyroid. For the first one, I under went surgery, radiation and chemo. Had very few side effects from the chemo with 39 treatments but the radiation did a number on me. I was to be out of work for 4-6 weeks. It ended up as 11 months. This current time around they are only wanting to do Immunotherapy which is a different kind of chemo. It will be once every 3 weeks for 24 months. When they first diagnosed it I was given 6 months. But working with my Interventional Radiology Dept they were able to go in and inject a chemical into the liver tumors. After 3 weeks and a MRI scan it appears that they killed about 90-95 percent. I go back in 2 weeks to have the live spots reinjected. Now they are saying IF eveything goes right I should see 2-5 years. I consider it just a bump in the road and still try to do every thing I can. I noticed many participants here have similar ideas. My motto is "I never give up, I just have to back up and punt sometimes".

wbcgaruss's picture
wbcgaruss
Posts: 631
Joined: May 2018

have been reading about everyone's trials and tribulations dealing with their cancer journeys your hats off to them I tell you by reading about your cancer treatments description and all you went through was no walk in the park. You have been through a lot and still going-God Bless

Charmin50
Posts: 3
Joined: Dec 2019

Hi! I just had surgery three weeks ago to remove my MEC, high grade, tumor from my nose. Has anyone else heard of anyone on here who has/has had that location of this cancer? All the studies that I've read are at least 7 years old and older.

 

Thanks

tommyodavey's picture
tommyodavey
Posts: 704
Joined: Nov 2011

Welcome to the forum and welcome to the MEC club that has only a few members.  So sorry you got this but none of us asked for it.  It is a rare cancer and please try not to do a Google search.  Why?  Because the answers tend to be negative and worst cases.  You need positive feedback and all the help you can get.  Most of the answers will be found here in the archives.  If not, maybe try the best institutions like M.D. Anderson to look for research papers.

Being that MEC is so rare you may not find as much as you want here.  With me, no one had a base of tongue tumor so this site was more for support than anything else.  That, plus all the information I got regarding how my radiation was going to affect me.

Please stick around and the great people here will support you the best we know how.  Plus, any additional information you provide will be an asset to this site.

Tom

Mikemetz's picture
Mikemetz
Posts: 431
Joined: Nov 2011

I'm just now seeing this thread, but had a MEC stage 4 base of tongue diagnosis in 2009.  Obviously I surviviedCool.  I agree that it's hard to find much on MEC, but did learn that the survival rate is lower for MEC than SCC by quite a bit.  My docs told me that they didn't see many cases, so just decided to treat it like it was SCC.  36 rads + 3 Cisplatin chemos.  No surgery.  If anyone has any more info on MEC, please pass it along.

Mike

Mom68
Posts: 98
Joined: May 2017

Hi Charmin! I had MEC on the roof of my mouth, and had some of my hard palette removed, resulting in a fistula. I would imagine that the mucoepidermoid carcinoma spread from your minor salivary glands on the roof of your mouth to the nasal cavity? Are they recommending chemo/radiation? What's the plan? 

We're a small group here but we've received plenty of support. This is a FANTASTIC group to share things with. I hadn't checked in for awhile now, and wanted to see how everyone was doing. Please feel free to post here and I'll be sure to check back. 

Also, you may just want to start a new thread regarding your diagnosis. Warmest regards.

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