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Mucoepidermoid carcinoma (left hard palate, intermediate grade)

Shemika
Posts: 10
Joined: Jan 2012

Hey everybody I just found out that I have mucoepidermoid carcinoma intermediate grade in the left hard palate of my mouth. I found this out from my oral surgeon. Can any one tell me what I can expect as far as treatment goes?

Mikemetz's picture
Mikemetz
Posts: 348
Joined: Nov 2011

I had MEC at the left base of my tongue, diagnosed almost exactly three years ago. While it is rare, the docs all handled it like SCC and things have turned out OK for me. The chemo and radiation treatments appear to be similar to those for SCC, as was the recovery sequence and overall experience. My MEC responded well, and quickly, to the treatments and I've been NED since. So, while our cancer cells are/were different than most on this list, I would recommend that you follow the threads and ask the same questions as the SCC patients and survivors.

There is a wealth of information on this site, so you might want to trace some of threads to get caught up. Sweetblood22 has a great compilation of FAQs in her Superthread that you can find pretty easily.

Good luck with your treatments and come back here often for information, advice, and support.

Mike

Shemika
Posts: 10
Joined: Jan 2012

Thank you ;-)

Skiffin16's picture
Skiffin16
Posts: 8095
Joined: Sep 2009

Sorry for your situation, and I can't offer you any information on your particulars (I had STGII Tonsil Cancer). But I can offer my thoughts and prayers and welcome you to the forum.

Here's the link to the SuperThread that Dawn has compiled the many contributions from several other forum members;

SUPERTHREAD

Best,
John

Shemika
Posts: 10
Joined: Jan 2012

Thank you ;-)

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

Hi Shemika, and sorry about your diagnosis. I too have it and just had my second surgery on my neck to remove a positive lymph node. Mine was on the base of my tongue but yours is not unheard of. I have read about others with the same location so they will chime in later I hope.

Your doctor probably already told you that Mucoepidermoid Carcinoma is a rare one and there isn't enough information to suggest the most successful therapy. I tried to stick with the most traditional treatment as was suggested by my surgeon. So far I've had two surgeries and am facing the last part of radiation. Low dose because the cancerous areas were surgically removed. Others elect to have chemo and radiation to shrink the tumors and other areas of disease.

Welcome here. This is a group no one wants to join because the cost of admission is high. But you will find lots of support and information here.

Hope all goes well for you. I was told MEC is one of the cancers that respond well to treatment. At least you got that.

Tommy

Shemika
Posts: 10
Joined: Jan 2012

Thank you ;-)

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Again - sorry you need the site - glad you found it. you'll find that most of us here have some variation of one of a few treatment plans. I had SCC (base of tongue with two lymph nodes involved). My treatment started with open biopsies, tonsillectomy, then induction chemo with three chemo drugs(three rounds over a nine week period). Next came installation of a stomach feeding tube. This was followed by seven weeks of radiation and chemo (a single drug this time - seven smaller weekly doses), later removal of feeding tube and finished up with a modified radical neck dissection (removal of lymph nodes from the right side of my neck). The drugs I had were Cisplatin, Taxotere, 5FU and Carboplatin. Our experiences here run the gamut anywhere between "felt tired and a little ill and sore throat and felt like a bad sunburn for a while, but worked full time throughout treatment" to "absolutely horrible - I thought about quitting". I'm sure more folks (who have a diagnosis more similar to yours than mine) will be chiming in soon. Do well, and keep us posted.

- Pam

Shemika
Posts: 10
Joined: Jan 2012

Thank you ;-)

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I didn't have your cancer, i had SCC, so i have no info for you directly, but, I spent a bit trying to round up some MEC info from past threads, that might be helpful to you. Not sure if you have done any searches or read any past threads. Thought these might be helpful:

mucoepidermoid carcinima

MEC Phase Two

Tonsil cancer-Mucoepidermold carcinoma

Another Mucoepidermoid Carcinoma

Just diagnosed with mucoepidermoid on the upper left palate

Mucoepidermoid Carcinoma (150014)

Mucoepidermoid Carcinoma (203632)

Shemika
Posts: 10
Joined: Jan 2012

Thank you so much for the links. ;-)

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

shemika, I sent you a message with some basic info. I am not on here very much any more, but I will try to check it a little more often in case you have any questions about MEC (Mucoepidermoid Carcinoma). This time of waiting is the tough part. waiting for the tests to be run, waiting for the results, waiting to see what the doctor(s) recommend. However, once the decisions are made it gets easier...because then you can fight. There may be pain, there may be discomfort...but it is pain with an end, when it will be over. There will be a point when you will smile, when you will laugh, when you will live without thinking about cancer. those are the moments to fight for. Huge Hugs to you!

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Good to see you post. Hope you, hubby and kidlets are all well. You are my go to person when someone needs info on MEC, I refer them to your very clear, and useful posts. Be well!

cl73
Posts: 8
Joined: Jul 2012

Hello ekdennie,
I was told that you could provide some information to me regarding MEC. My 25 year old sister was diagnosed in 2009 and the MEC has had a recurrence as of 6/30/12. She will be starting chemo very soon. What are some of the ways me and my family can help her feel comfortable during her chemo treatment? What helped you deal with your diagnosis. My sister is very quiet and doesn't talk much about it, but I can imagine she is freighted and scared.

hwt's picture
hwt
Posts: 1963
Joined: Jun 2012

While I don't have the same cancer I have been through chemo and had my sister by my side. Talk to your sister and write down her/your questions before you meet with the doctor (ex. will she lose her hair if you think that would be a concern for her)Be the extra set of ears at her doctor appointments and take notes. My sister sat through my 1st chemo treatment with me but after that I told her I just wanted to put on that heated blanket and sleep through it. Ask her which she would prefer. It may change from week to week. Be as positive as you can but if it's a sad day then allow her that. Let her know you understand it's scary and that you are scared too but will get through it together. She is lucky to have a sister reaching out on her behalf like you are. Best of luck.

cl73
Posts: 8
Joined: Jul 2012

thank you hwt! i really appreciate the suggestions and encouragement. They will be helpful. if you think of anything else, please feel free to let me know.

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

I am sorry it took me so long to reply. I can not offer you advice about either the chemo nor the recurrence as I have not had either, however, I can tell you what I would want from my family if mine ever comes back. I know I would be scared. I know I would be angry. But above all I know I would like my life to be as normal as possible. I have hated all the well meaning comments about food, my weight, and my energy levels. I would want a stuffed animal to hug when I feel bad and I saw this rag doll whose purpose is for you yo use it when you are having a bad day...I would want one of those as well. I wouldn't want my family to act as though I am sick...I would want all their prayers, but no tears...I would want my family to be strong for me...to know that chemo doesn't always work, but that I am hopeful that it would for me. I would want to plan for the possible alternatives...for just in case, while hoping and praying that my preperation isn't necessary. Prayer helped me with my diagnosis, as did knowing as much about my tumor. I got my strength from my family and from doing normal things. I hope I have been a help. You can do a search for mucoepidermoid carcinoma to find some of my posts and comments about this type of tumor, but know that MEC is composed of many types of cells, and it is important to know which variety she has to know how favorable her outcome will be...that any what grade and what stage her tumor is at. Think positive. Hugs! ekdennie

shellef
Posts: 1
Joined: Nov 2010

Hi Shemika,
I also was diagnosed with an intermediate grade mucoepidermoid which presented in my left palate in March 2010. I know our cancer is a rare one and there aren't that many of us around, but I wanted you to know that you are not alone in this. Please feel free to contact me at any time!

Shemika
Posts: 10
Joined: Jan 2012

Thank you for sharing your story with me. I'm sorry that you have to go through this. Do you still have a whole in the roof of your mouth? I'm two weeks and one day out from surgery and I am having the worst time trying to get fluids down because I can't get used to the fluids going in my nose. I have lost 19 pounds since the surgery which is one of the pluses for me ;-) but I can't wait to be done with all of this. It's just really hard for me right now. Yes the cancer is out of my mouth but the recovery period is kicking my butt. At first they told me that my cancer was intermediate but then they told me that it was low grade I didn't read my final path report I'm just going on what the doctor told me. He also said that I didn't need any radiation, so that's good, but like I said earlier this recovery period is kicking my butt. What kinds of foods were you able to eat. I'm drinking Ensure Immunity Boost, eating jello, applesauce, and pudding.I find that I can't eat or drink anything too cold, like ice cream right now. So do you were an obturator if so How long after your surgery were you able to start wearing it? Before all of this happened I already spoke kind of like somebody was pinching my nose and now Oh my nobody hardly understands anything that I'm saying and that frustrating me. The flap that they tried to create to cover the hole in the roof of my mouth failed so the hole is mostly open and fluids gets into my nasal cavity every time I try to drink something, so I drink from a straw a little bit at a time. I started to get a little depressed about the whole situation. I had to tell the people that I be around that they just don't fully understand what I'm going through. Maybe everything will get better for me soon. Again thanks for replying to my post.

longtermsurvivor's picture
longtermsurvivor
Posts: 1819
Joined: Mar 2010

Hi shemika,

Although I don't have MEC, I've been through the process of radical surgery of the mouth, complete with tracheostomy, feeding tube, extensive vascular grafting, etc, and have had radiation to the mouth/throat area twice. The most recent radiation ended just a few days ago, and was for a carcinoma involving the soft palate.

Ive had a lot of feeding problems in the last year, including the "everything runs out my nose" routine. So I'm qualified to say I can identify with your frustrations.

Having said that, I'm next going to tell you that you need to be very patient with yourself. These problems are there to be solved, and they will be solved. Just not as quickly as you would wish. There's lots of healingto do yet, then things won't be so dang sore, and you won't be so temperature sensitive, and your swallowing mechanism will react better.

Then you will have to retrain your swallowing mechanism. A lot of what used to go out my nose no longer does, and it is because I changed the mechanics of swallowing. Don't ask me to describe to you exactly what I did, because I don't think I can do that in type. But I did gradually solve this problem. It took months of practice. This time I didn't use a speech pathologist to help me, but I have in the past for this type of thing.

They will figure out the obturator thing for you, and that will be the gold medal solution. Your speech will improve, but right now it is what it is. Heck, with this last radiation, I've sounded like an absolute idiot for the last, oh, 6 weeks, and until the swelling goes down (i hope it does go down), that's just me. Frustrating sometimes, like trying today to tell the guy at Home Depot about a special part I needed:)

Its all good. You've won the most important battle. You got the cancer out with a good prognosis. The rest of this is going to take time. Be kind to yourself.

And get enough calories in to stay sane.

Pat

Shemika
Posts: 10
Joined: Jan 2012

Sorry to hear about your situation and thanks for replying to my post.

Shemika
Posts: 10
Joined: Jan 2012

Sorry to hear about your situation and thanks for replying to my post.

Shemika
Posts: 10
Joined: Jan 2012

Sorry to hear about your situation and thanks for replying to my post.

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

I was able to be fit for a temporary obturator pretty quickly. you just need to get a referral from your oral surgeon or your ENT. I am so happy to hear that it was low grade! happy dance for you!
as for food and fluids up the nose, I still have some with my obturator, but it is better. I eat a lot of macaroni and cheese. nothing too hot or too cold. I also recommend using a lot of neil med sinus rinses after you eat to help keep your nasal cavities from getting infections. I take small sips of liquids and almost "toss" them towards the back of my throat when i eat or drink without my mouthpiece. I also always have tissue and paper towels with me when I eat. sometimes you can add a food thickener (available at a pharmacy) to your foods to make it easier to get more down. best of luck to you! HUGS!

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