Mucoepidermoid carcinoma

jen2609
jen2609 Member Posts: 14
edited March 2017 in Head and Neck Cancer #1

Hi Everyone!

I found out last week that I have mucoepidermoid carcinoma and I can't find that much information on this type of cancer.  I'm 29 and felt that I was quite young to be diagnosed with this type of cancer as I don't drink or smoke, but from the reading I've done so far, it seems to affect a variety of people.  I'm very lucky as it's low grade and surgery should be all I need.  I will get surgery in a couple of weeks and I've been advised that I will need an obturator as the tumour is next to the bone on my hard palate, so I will have a hole.  

Just looking to reach out to anyone who has experience of this and if they share their stories and let me know how they've got on with treatment.  I'm a bit scared, as I'm sure everyone who finds out they have cancer will be.  

Comments

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    edited March 2017 #2
    MEC

    Hi Jen, and welcome to the forum!  I too had low grade MEC on the base of my tongue which had already spread to my lymph nodes on my right neck.  Yours is the more common area of infection and surgery has gotten so good that once it's removed the doctors can reconstruct your hard palate and cover the hole.  Meaning you should get through this just fine with minimul treatment. With a low grade tumor the chances of recurrence is very low.  And no, they don't know what causes it except exposure to radiation.  Women get it more than men and it seems to be more common in children and those in their 5th decade of life. Mine came on at 56 years old.  I'm now passed the 5 year mark but my surgeon wants to keep seeing me once a year for a total of 15 years to make sure it doesn't return.  With a 95% chance of survival, I have no fear of it returning.

    If you have any questions, feel free to contact me via PM. As far as the obturator is concerned, ask about their plastic surgeon doing the reconstruction.  My surgeon told me recently that his partner specializes on that.

    Tom

     

  • jen2609
    jen2609 Member Posts: 14
    #3
    tommyodavey said:

    MEC

    Hi Jen, and welcome to the forum!  I too had low grade MEC on the base of my tongue which had already spread to my lymph nodes on my right neck.  Yours is the more common area of infection and surgery has gotten so good that once it's removed the doctors can reconstruct your hard palate and cover the hole.  Meaning you should get through this just fine with minimul treatment. With a low grade tumor the chances of recurrence is very low.  And no, they don't know what causes it except exposure to radiation.  Women get it more than men and it seems to be more common in children and those in their 5th decade of life. Mine came on at 56 years old.  I'm now passed the 5 year mark but my surgeon wants to keep seeing me once a year for a total of 15 years to make sure it doesn't return.  With a 95% chance of survival, I have no fear of it returning.

    If you have any questions, feel free to contact me via PM. As far as the obturator is concerned, ask about their plastic surgeon doing the reconstruction.  My surgeon told me recently that his partner specializes on that.

    Tom

     

    Hi Tom

    Hi Tom

    Thanks so much for reply and sharing your experience, as I couldn't find much information on people with low grade MEC and mostly found stories of people who had more aggressive forms of MEC and needed a lot more treatment than I do.  So I appreciate your reassurance that I'll get through this with minimum treatment.  

    I'm still awaiting a date for surgery but I'm managing to stay positive.  

    Glad to hear you're passed the 5 year mark and have no fear of it returning!  

    Jen :) 

  • sdavids109
    sdavids109 Member Posts: 2
    edited April 2017 #4
    Hello

    Jen2609 . I was diagnosed in Jan,2017 and had my surgery 2/9/17. the tumor was on my right plate . so I'm almost at my 2 month recovery. i also had a low grade and will not need chemo or radiation. recovery has been alot and I eating is still difficult but in general everything went will. Im new at all this too.  I was also lucky the cancer was very close to the bone but I did not loss teeth or bone. 

    if you want to talk or anything you can send me a PM . 

     

    Suzanne

     

  • ekdennie
    ekdennie Member Posts: 238 Member
    #5
    MEC hard palate

    I was diagnosed with MEC on the hard palate just a few weeks after I turned 30. I wear an obturator. Please make sure they tell you how to keep it clean, when you should remove it, and overall basic care of it. I have posted several posts on here that might help you, but I am almost 7 years out since my surgery and I am sure there is some newer info available. Feel free to msg me with any questions and know this...there is nothing you did. There is nothing ypu could have changed. MEC doesn't care how old you are, how good a lifestyle you live. I, too, am a nonsmoker and only a very occassional drinker. I have 4 children, three when I was diagnosed and 1 since finishing treatments. 

  • ekdennie
    ekdennie Member Posts: 238 Member
    edited April 2017 #6
    obturator

    I did want to add that my hole was too big for reconstriction, so I wear the obturator. Ask who is the best prosthedontist in your area. If there isn't one, then go to one, even if you have to travel some distance to get to them. It makes a huge difference. No one looking at me or listening to me can even tell i have an obturator. Post surgery it is best to eat foods that are neither too liquid or too hard...think overcooked pasta. It takes time to get used to the obturator and you will have sores. My MEC turned out to be intermediate grade, but and this is a big but, other than needing radiation, mysurgery and obturator are the same as anyone who has low grade would have. 

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