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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: 583
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: 156
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

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