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Mucoepidermoid Carcinoma Palate Low Grade - Help

gpmav
Posts: 8
Joined: Mar 2012

Hi!
I've been diagnosed with Mucoepidermoid carcinoma involving the minor salivary glands on the palate.
Had a surgery 20 days ago to remove a lump on my right palate (1.4 cm) which turned out to be Low Grade Mucoepidermoid.
I've been told margins were free and I don't need any radiation or Chemio.
But I'm very scared and I would like to have more info about this type of cancer and possible treatment.
Did anyone have same experience?
Thanks!

mbm
Posts: 2
Joined: Dec 2009

This could have been a post I would have made almost a decade ago on behalf of my son, who was then 3. Extremely rare and same diagnosis as yours and same location. You should be scared, it's cancer, but the good news is that surgery only is a Good Thing.

Mind sharing your age?

doc1955bob
Posts: 11
Joined: Jan 2011

Dear mbm,

  how is your son now?I would like to know the long term survival of such cases, as my son gotthe tumor removed 3 years ago and tillnowit is OK.

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longtermsurvivor
Posts: 1819
Joined: Mar 2010

that frequent this site, and I'm sure they will post to you when they come by. I see from your bio that you are in your thirties. Until others get used to checking for that information you'll get a few redundant questions. I wouldn't let that bother me.

You seem to have gotten the standard treatment for low risk MEC, which is surgery alone. That obviously is a good thing. Keep checking back because you'll eventually fine the right people to have a conversation with.

Best to you.

Pat

gpmav
Posts: 8
Joined: Mar 2012

Many thanks!!

gpmav
Posts: 8
Joined: Mar 2012

Many thanks!!

tommyodavey's picture
tommyodavey
Posts: 363
Joined: Nov 2011

I too was diagnosed with MEC last Oct., but mine was on the base of my tongue and had spread to the lymph nodes on the right side.

Right now I'm going through radiation therapy but no chemo. My RT Oncologist told me the same as you. If it had only been the one tumor then I may not have needed radiation. Luckily you caught this in time. Mine must have been growing for many year and I never felt any symptoms. It was so low that unless the Dr. used a scope they wouldn't see it. It took a sinus infection to go see an ENT who discovered mine.

So you have a lot to be grateful for and I do too. Mucoepidermoid Carcinoma is a very rare cancer. My surgeon said that in the 25 years of practice he has only seen three. And one on the tongue, never. It mostly sticks to the glands, but there are small glands on the tongue too so who knows how these things start.

IMO you don't have anything to worry about.

Tommy

gpmav
Posts: 8
Joined: Mar 2012

Hi Tommy, thanks a lot for your words, I'm trying to learn as much as I can about my cancer and I found so many things in this site! I still have a hole in my palate but it's recovering quote well and no much pain... Thanks again and best luck to you! Hope to' hear from you soon!

doc1955bob
Posts: 11
Joined: Jan 2011

Hi gpmav,

 the hole in palate can be closed by a plastic surgeon aswas done in my son's case--temporalis muscle flap was used to good effect----noproblem in talking or taking food and water.

 

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

welcome to this site gpmav. I am sorry that you found yourself in a position where you had to find us, but I am glad that I mint be able to help you some. I was diagnosed with MEC (Mucoepidermoid Carcinoma) in June of 2010. I had surgery and when my final pathology results came in I was told mine was not low grade but rather intermediate grade.
MEC is rare. when it is found it is most commonly found in the parotid glands. mine was also in the minor salivary glands of the hard palate.
some basic info:
it can occur in anyone at any time. there are no known risk factors for MEC. I was 31, but I have read of several who were in their teens and many over the age of 60. The best treatment is surgery. in many cases, if your tumor is low grade and you have clean margins you can often be considered cured. the next best treatment is radiation therapy, but that is usually reserved for those with intermediate grade MEC or for those who were unable to get clear margins through surgery.
I am not a doctor, so I do not know what method of treatment your doctor will advise, but when we thought mine was low grade, we were aiming for a cure through surgery. for me, that just wasn't to be.
at this point you will probably see your dr for frequent follow up visits, where they will examine you looking for any sign of regrowth. as time passes you will see your dr less and less often.
hearing you have cancer is scary, but now that the cancer has been removed...you are cancer free! try to not dwell on the what if's, but rather on the incredible gift you have been given...you had surgery, you have clean margins and you don't need radiation or chemo. I wouldn't wish radiation (of the head and neck region) on my worst enemy. so please be thankful that you didn't have to go through that. it helped me to think of cancer as a roommate that I didn't like, didn't want, and was excited to get rid of. for me, surgery was the eviction notice...it was when I got to know that this horrible roommate was getting kicked out and I wasn't going to "allow" it back in...I am just too stubborn!
did they have to remove any of your hard palate? is there a hole now, or were they able to close it completely? I have a hole, a prosthetic so I can eat, drink, and speak somewhat normally. I am hoping they will be able to close the hole in the future, but there are no guarantees that it will work as I hope it will!
you are in my prayers. sometimes we all need a hug...so HUGS!

gpmav
Posts: 8
Joined: Mar 2012

Thanks a lot for your inspiring words!!! Yes I still have a hole in my palate but it is ricovering quite well so I can eat and drink with no big problems.
I will see my surgeon soon and I'm full of questions to' ask but I'm glad I found this site! People with positive attitude who help me to feel better!
Thanks again and of luck to you!
Hope to' hear from you soon

tommyodavey's picture
tommyodavey
Posts: 363
Joined: Nov 2011

Radiation was a very huge decision I had to make. My surgeon and Onc both said that there is a 25% chance it will return, and if it does, it will be in the parotid gland like everyone else. So in my mind they are saying it's a 75% chance I won't get it back. Pretty good odds I'd say.

After careful consideration, I decided to go through the hell of radiation therapy and have almost a ZERO percent chance of it coming back. To me the 25% was just not good enough and I know I'd worry about this for the rest of my life. Luckily my Rad Onc has me on low dose RT and not the full charge. I am now just passed the halfway point and the symptoms are not that bad....yet. My taste buds have held on until today where now they are operating at about 50%. My tonic water tastes like soda water and everything smells rank. The bad tinnitus I already had is now a jet plane between my ears, but then I'm used to it. I cough quite a lot as my tongue surgical site is being traumatized and liquids go down the wrong pipe.

If I can end treatment as good as I am now, bring it on! My RT Dr. said I was an anomaly by not having too much throat pain. He said it appears my body is healing as fast as they zap me. The next week will tell just how bad it will be. Come on April 3rd, my last treatment day.

Feel very grateful that yours ends here. My tumor was also clearly defined and low grade. Only problem was it grew for half a decade w/o being DX'd.

Thought I'd give you a look at the other side. You are very fortunate.

Tommy

gpmav
Posts: 8
Joined: Mar 2012

Tommy, your positive attitude helps me to look at things in a different way! I'm sorry you have to go through radiaton therapy but glad to' know your body is healing fast!
Beginning of April I will meet the doctor for my first check, I'll keep you posted and please do the same and let me know how radiation therapy is going on!
A huge hug to you!!
G

Laurenny
Posts: 1
Joined: Sep 2012

Hi all, I too had low grade MEC. I had surgery on April 13th. I now have a hole in the roof of my mouth. I wear an obterator to eat, drink, and speak. I found out I had cancer when I was 6months pregnant. My doctor advised me to wait to have surgery until I delivered my baby since it was slow growing. Ugh, it was so hard going through pregnancy with my first child at the age of 29, knowing I had cancer inside me. Doctor told me that I would not need radiation or chemo. However, I'm paranoid. I have no idea how long this cancer was growing for.

I actually had the lump biopsid in 2010 when I first felt it on my palate. The biopsy came back benign. So I went on with life until dec of 2011, that's basically 2 years later, when I had the lump biopsid again since I was pregnant. This time the biopsy came back positive for cancer. My doctor told me that if it is cancer now, it was cancer back in 2010. I was so upset. I couldn't believe what was happening. It's sad, because now everytime i go to doctors, I can't trust them or I want more tests and 2nd, 3rd opinions. I wish I could have taken care of the cancer back in 2010, when I wasn't pregnant. But it is what it is. I go on with life now. I'm so in love with my baby boy who will be 6months tomorrow. He is my miracle baby. Without him, who knows when I would have went back to the doctors to get the lump checked.

When I initially found out the lump was benign back in 2010, that dentist wasn't alarmed and wasn't telling me to get it removed right away so I didn't worry about it. First time I got a cavity was when I was 18years old and I wasn't looking forward to have any work done in my mouth. But like I said, the dentist didn't say this has to be removed ASAP or seem alarmed by it, so I wasn't. Now I know never to let a lump go too long without having it checked out and make sure to get it removed.

I am almost 6 months post operation. How are all of you survivors coping daily with your defects? I could have had an arm flap to cover the hole up in my mouth but I decided against it because the scar was too much for me and plus I wouldn't have been able to care for my infant properly. The plastic surgeon told me that I could get it done later on if I wanted to. I'm looking in a cheek graf but my hole is just about over the limit to how much tissue they can cover it. So the Graf may or may not work for me. Only way to tell is if I have it done and see if the tissue covers the hole completely. I wish you all much love, light, happiness. We are cancer survivors!

tommyodavey's picture
tommyodavey
Posts: 363
Joined: Nov 2011

Hi Laurenny,

I too posted above that I had it on the base of my tongue so I can't really help you with how to deal with the hole.

My suggestion is for you to start a new topic just for yourself so you can get the proper Welcome to our site messages. Your message on this one is buried fairly low on the page so you won't get many responses.

I am so sorry you have to deal with your affliction. At least you didn't need chemo or radiation like I had.

Welcome here and make yourself at home!

Tommy

doc1955bob
Posts: 11
Joined: Jan 2011

Hi laurenny,

    get the hole covered by a flap from temporalis muscle as was done for my son, it is excellent if done by a good plastic surgeon.

braymack
Posts: 7
Joined: Oct 2009

Hi Laurenny

Have you had your fistula repaired? I too have a fistula as a result of mucoepidermoid carcinoma. I was diagnosed in 2007. I had surgery January 2008. Following the surgery the fistula developed. I have had two repair attempts so for with local flaps from my palate. In just over two weeks I will be having a FAMM flap surgery done using my cheek.  I'm a little nervous but my surgeon is really good and very confident.  

SamAct
Posts: 9
Joined: May 2012

Seems I had a similar experience, albeit intermediate grade. Surgery with clear margins and dr didnt recommend radiation. I am scheduled for a follow up visit tomorrow, likely with some scans/tests.

Keep your spirits and hopes up! :)

LeoS2323
Posts: 143
Joined: Mar 2012

Hello there fellow MEC sufferers!

Hi Tommy how are you getting on? Great to see you posting!

Sam have you had your follow up? If so then how did it go?

I have been off the board for a few months. Just getting back to a bit of normality after the initial shock and the operations, which has been an absolute pleasure to be honest. Spending time with the kids, working and getting back to my life (almost) as it was before diagnosis. Its good to be back though and to see some familiar names as well as some new ones.

For those who don't know my story, I had a lump turn up in my neck in September of last year, then went through many tests (blood, FNA, CT, even PET, the lump barely reacted) which all came back negative for cancer. It was only when it was finally removed at the start of March this year that we had a shock from the lab tests that it was MEC not a branchial cyst.

Like several of the posters on this thread, the initial shock of the word cancer is the worst - but I have eventually come round to thinking that on a scale of cancers I was quite fortunate to have what my oncologist described as an 'indolent' MEC.

I had already had the lump removed and I then had an MRI which came back normal as well so we discussed options. We decided to go for a neck dissection to make sure nothing had spread from the original lump, as well as biopsies of the BOT and tonsilectomy as those can be hiding places for the cancer from a PET scan because of the activity that occurs in those areas - everything came back clean, so that was it for the time being.

I have just had an MRI which is my first scan since my results from the dissection, and will get the results a week tomorrow. They also did a mouth and jaw X-Ray, my oncologist doesn't even want to give me a PET scan as he just doesn't think I need one and its radiation I can do without. So its MRI scans every 5 months for 18 months or so for me.

The strangest thing about my case, is that usually a neck lump means there is a primary cancer. As it stands my oncologist (who is an amazing guy) thinks that there isn't one; he thinks that either the lump in my neck was the primary as salivary tissue can turn up all around the head and neck area, or maybe my body killed the primary but not before cells escaped to the neck - the believes its the former.

I learned a great deal about MEC during the panic of diagnosis and trying to find out what the chances were of getting through it. This is an eminently curable cancer in its low or intermediate forms certainly - fortunately if caught in good time surgery can be all that is needed, and we can avoid radiotherapy and chemotherapy if we are lucky.

I know there are no guarantees, but although I have a scar that runs from under my ear to the middle of my throat I couldn't care less. My little girl turned 4 yesterday, my son is 2 in November and all I want is to be their Dad for a long, long time which I know I will be. I was back playing Sunday League Football (Soccer to you guys stateside) 2 months after my neck dissection which my doctors couldn't believe (and was a testament to my surgeon); it felt like the neck might rip a little but I found getting back into competitive sport quickly really good for the soul and conquered it quickly.

I have been going to the gym a lot - exercise is fantastic for the mind as well as the body after going through the worry of a cancer diagnosis, so I'm ready to tackle whatever else it has to give. MEC is hugely beatable, and I hope everyone on here with this particularly unusual form of cancer can encourage one another to do exactly that.

All the best

Leo

cl73
Posts: 8
Joined: Jul 2012

Hello Leo
My sister was diagnosed with MEC in 2009. She is 25 years old. At that time she had 33 treatments of radiation and the lump removed. Back in March 2012 we discovered that the cancer had returned and it came back with a spot on her liver as well. She is currently taking chemo treatments...I don't know how many. Is there any information you can provide to me. I'm lost as to what to ask Her oncologist. I believe I need to know the grade, etc.

thank you so much! any info is helpful.

doc1955bob
Posts: 11
Joined: Jan 2011

Dear gpmav,

I pray for ypu and I wish you are completely free from cancer now. My son had a similar tumor about 3 years ago and it was removed by surgery. Till now it is OK. She was also not given any chemo or radiation. So hope that it will not recur, but get checked up every 6months/12months.Take care.

gpmav
Posts: 8
Joined: Mar 2012

Dear friends, 

just to let you know that I had my annual check yesterday and the result is NED, the best words I heard in the last 12 months!! I can't say it's completely over and i will be scared at the next check but today it' s time to celebrate life! thanks to all of you For the great help!!!!

donfoo's picture
donfoo
Posts: 1271
Joined: Dec 2012

Great news!

phrannie51's picture
phrannie51
Posts: 3781
Joined: Mar 2012

There isn't one person here who doesn't love to hear about our bus mates getting a NED....CONGRATS on it! 

p

SamAct
Posts: 9
Joined: May 2012

Hurray!!  That's what we like to hear :)

 

I don't know if i posted an update, but my scan in September of 2012 was clean, and have another scheduled on April 9th (2013).  Coming up on the 1 year anniversary when the tumor was discovered.  Hard to believe.  Doing great, btw!

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