Mucoepidermoid Carcinoma

zoebirch

It has been confirmed today that I have a 2cm tumor on the base of my tounge!!! I am 25 & have to young children & just cannot believe this is happening to me. I have smoked in the past but never alot (1 or 2 a day) & not for the last 3yrs.
The good news is that they Drs think it is a low grade tumor & slow growing, they think it could have been there for yrs & it is only by chance they found it. I went in for surgery on another neck problem I have & they found it when they put me to sleep & tried to put my breathing tube in, pure chance & luck I suppose.
I have been having symptoms for aprox 3yrs including difficulty swallowing, increasing pain when drinking cold drinks, ear aches & only recently a feeling & taste of mucus in my mouth. The Drs do not know how many of these symptoms have been caused by my other condition (Eagles Syndrom) as they are almost the same.
I am told this condition is very rare, doesnt usually occur in people my age & is normally in the glands & not just at the base of the tounge.
I would be greatful to anybody who could give me their experience & knowledge on this Cancer as I am still pretty much in the dark.

bfisher5560

Zoebirch
Hi Zoebirch,
Although I don't have information on your specific type of cancer, you have come to the right place for support and friendship. The people here are very informative and more than that I love to read how they care and look out for one another.

I hope you will find the answers you are seeking and have the support you need along the road to your recovery. Keep us posted along the way. Best wishes, Becky

Scambuster

Protocal
Hi Zoe,

Sorry to hear you have this diagnosis, but keep your spirits up as these things are now very treatable. You are probably going through some emotional drama now which is normal. I don't have answers for your particular diagnosis but the treatment regimes are usually similar.

If not done already (you didn't mention what test confirmed ??) but usually your Doctors will now do some type of Scan and most commonly a PET /CT to determine the size and spread of your tumor and then they will 'Stage' you. This will indicate size, advancement, spread etc.

There are usually any combination of 3 treatments being 1. Surgery, 2. Radiation & 3. Chemotherapy - not necessarily in that order and if the case is right, you will usually get the Chemo & Rads together. While these treatments can be rough, you do get through it and come out the other side. We al have different reactions to the treatment.

Can you get back to the board here with more details like what stage or how they determined you case (Biopsy perhaps). More people will follow with their assistance and advice.

Cheers
Scambuster

Michael Abrams

Scambuster said:

Protocal
Hi Zoe,

Sorry to hear you have this diagnosis, but keep your spirits up as these things are now very treatable. You are probably going through some emotional drama now which is normal. I don't have answers for your particular diagnosis but the treatment regimes are usually similar.

If not done already (you didn't mention what test confirmed ??) but usually your Doctors will now do some type of Scan and most commonly a PET /CT to determine the size and spread of your tumor and then they will 'Stage' you. This will indicate size, advancement, spread etc.

There are usually any combination of 3 treatments being 1. Surgery, 2. Radiation & 3. Chemotherapy - not necessarily in that order and if the case is right, you will usually get the Chemo & Rads together. While these treatments can be rough, you do get through it and come out the other side. We al have different reactions to the treatment.

Can you get back to the board here with more details like what stage or how they determined you case (Biopsy perhaps). More people will follow with their assistance and advice.

Cheers
Scambuster

mucoepidermoid carcinoma
Perhaps I can be of some help and some hope.. I am a 62 year old male. A painful lump attached inside my right jaw was biopsied by an oral surgeon after a visit to the dentist in December. On Feb. 1, medical doctors at Shands Hospital in Gainesville, Fla., at the University of Florida removed a salivary gland beneath and behind my right jaw which had stage two mucoepidermoid carninoma. It was a 10 hour operation, as the tumor was fairly far back, but they were able to go in through the mouth, and for this I give thanks, as an option was to break the jaw and go in by rotating the jaw.

A neck dissection revealed no further spread into lymph nodes, so radiation was called for, and I have just finished the six weeks of this treatment.

I spent a week in the hospital and three weeks on feeding tubes through the nose (two at home), and a couple or three more weeks of healing before the radiation began. During the six weeks of radiation, I lived at Hope Lodge in Gainesville, run by the ACS. It was one of my best decisions, because it gave me the counsel and friendship of so many people going through cancer. You can live there free with your caregiver, alternatively my wife and my daughter.

I am not the best of patients, but once I saw the courage of other people who were going through this and worse, I knew that I could do it. I am still recuperating at home and hope to be back out in the world in a few weeks, at least for short times. Recovery from any cancer may take months, so I will have to be patient. Radiation effects are pain, nausea, and exhaustion. Fortunately I can still swallow liquids (no need for more tubes during recovery) and my voice is good.

My best suggestion is to never let yourself be alone and to talk to people who have gone through this sort of thing. Face to face, if possible. I will be happy to answer any questions here or by email. I'm Mike at meabrams@earthink.net

carolynss

You can defeat it!
Hi Zoebirch

It was almost 25 years ago that I was diagnosed with a mucoepidermoid carcinoma on the roof of my mouth right where the hard and soft palate meet. My dentist found it on a routine cleaning. I was also told it was slow growing but it was malignant. It was removed. No radiation. No chemo. That was nearly 25 years ago when I was 17 years old. I had never smoked. No one could explain why that happened to me.

If the margin is clear once it is cut out and it has not invaded any bone, you should be fine! It's not a very aggressive cancer. It's probably nicely encapsulated and just needs to be cut out. We're all praying for you Zoe. I know you'll be fine. I have two little kids too and I can only imagine what's going thru your mind. But of all the cancers to have, this one many times is very tame. May God be with you. I will keep you in my prayers. I have faith though that this is going to be ok

evie wan

low grade mucoepidermoid carcinoma

I am 32 yrs old, female, non-smoker, diagnosed with a low grade mucoepidermoid carcinoma on the right upper palate. Doctor told me that I need to remove the tumors and part of the upper palate. My concern is about the surgery and is there any side effect of removing the palate? 

I would be greatful to anybody who could give me their experience & knowledge on this Cancer.

Olivera

evie wan said:

low grade mucoepidermoid carcinoma

I am 32 yrs old, female, non-smoker, diagnosed with a low grade mucoepidermoid carcinoma on the right upper palate. Doctor told me that I need to remove the tumors and part of the upper palate. My concern is about the surgery and is there any side effect of removing the palate? 

I would be greatful to anybody who could give me their experience & knowledge on this Cancer.

I hade it in my nose cavity,

I hade it in my nose cavity, removed with operation 21.10.2015 . No radiations as i have clear margains. MR on evry 6 months. 33 years olld now.  

Olivera

how is everyboby

Michael zoebrich, how are you

Mom68

Maybe check Roll Call? Also...Hello Evie!

Hello Olivera! You may want to check the "Roll Call" thread to find out an update on Michael and Zoe. Or you may want to private message them. You can find out when they last checked in to the site if you click on their user names. For example, Micheal last checked in on this site on 2010. 

Also...Hello Evie! We are a small group here within the head/neck cancer forum with MEC. We have another thread, started I believe by LC, that we're keeping alive and updating on that thread. However, either way, welcome to the club. It isn't a club you wanted to join, but you are in great company here. This forum is filled with wonderful, supportive, caring people. I was diagnosed with MEC in April of this year, and had my surgery in June. I also had MEC right where you are describing: upper right palate. Yogi, LC and Jen all have had upper palate MEC as well, and we have discussed our surgeries and recovery and healing on another thread. It is either on the first page of the thread or perhaps on the second page. [*Note: I'll go ahead and post something to that thread so that it jumps toward the top of the forum page.] Tommy is another great wonderful person here who also was diagnosed with MEC, but his was around the tongue area (very rare place for it to be). All 5 of us are currently online and post here regularly. You can also message us as well. My surgery went well, they established clear margins, and I was declared "cancer free" after pathology came back. That is what will happen with you since you are low grade as well. MEC is broken down into 3 catagories: low, intermediate and high. Intermediate and high are USUALLY treated like a standard SCC (squamous cell carcinoma), and low is the best case scenario, where surgery is usually the plan. Having all the skin on the roof of your mouth (and possibly taking some bone) is no picnic, but the mouth heals really quickly. The biggest side effect for me is dry mouth. You'll notice when eating (after you heal from the surgery) you just don't deal with eating as effectively as you used to. Eating a banana or raw broccoli is a challenge, for example. 

Best wishes to you all...Mary

evie wan

Mom68 said:

Maybe check Roll Call? Also...Hello Evie!

Hello Olivera! You may want to check the "Roll Call" thread to find out an update on Michael and Zoe. Or you may want to private message them. You can find out when they last checked in to the site if you click on their user names. For example, Micheal last checked in on this site on 2010. 

Also...Hello Evie! We are a small group here within the head/neck cancer forum with MEC. We have another thread, started I believe by LC, that we're keeping alive and updating on that thread. However, either way, welcome to the club. It isn't a club you wanted to join, but you are in great company here. This forum is filled with wonderful, supportive, caring people. I was diagnosed with MEC in April of this year, and had my surgery in June. I also had MEC right where you are describing: upper right palate. Yogi, LC and Jen all have had upper palate MEC as well, and we have discussed our surgeries and recovery and healing on another thread. It is either on the first page of the thread or perhaps on the second page. [*Note: I'll go ahead and post something to that thread so that it jumps toward the top of the forum page.] Tommy is another great wonderful person here who also was diagnosed with MEC, but his was around the tongue area (very rare place for it to be). All 5 of us are currently online and post here regularly. You can also message us as well. My surgery went well, they established clear margins, and I was declared "cancer free" after pathology came back. That is what will happen with you since you are low grade as well. MEC is broken down into 3 catagories: low, intermediate and high. Intermediate and high are USUALLY treated like a standard SCC (squamous cell carcinoma), and low is the best case scenario, where surgery is usually the plan. Having all the skin on the roof of your mouth (and possibly taking some bone) is no picnic, but the mouth heals really quickly. The biggest side effect for me is dry mouth. You'll notice when eating (after you heal from the surgery) you just don't deal with eating as effectively as you used to. Eating a banana or raw broccoli is a challenge, for example. 

Best wishes to you all...Mary

Hi Mary, 

Hi Mary, 

Thaks for your reply. Yea, I found out the other thread already. Great to know all of you here.