Recently diagnosed, mucoepidermoid carcinoma

beck9851
beck9851 Member Posts: 2 Member
edited November 2020 in Head and Neck Cancer #1

Hi all, i'm a 31y/o female new to the forums here and I just recently had a parotidectomy to remove a 1.5cm cyst just below my ear. I received the pathology report which ended up being a low-grade mucoepidermoid carcinoma. If anyone else has experienced this, how was your treatment?

I don't know what is going to happen next, though I have an appointment for a second opinion next week as to what my next steps are. My doctor thinks he may have removed it all, so I suppose i'll have to get an MRI to determine if i'll need any more surgery. Any support would be greatly appreciated. 

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited November 2020 #2
    I Believe This Means

    There is definitely cancer cells found and cancer involved. So I would think the next step is a Cat scan with dye of the head and neck area or more likely a PET scan which is a whole-body scan sometimes referred to as eyes to thighs scan. Here they inject you with a radioactive dye and scan your whole body to check for cancer at the site and make sure it is nowhere else in the body before they go to the next step. They may also recommend some follow-up radiation because in the operation some cancer cells down to the cell level which can't be seen may be there and the radiation is like a mop-up operation of the errant cells. You may want to look through the Superthread at the top of the head and neck forum you may find something to help in there. Mainly you are doing the follow-up and the second opinion now so find out what your next step is and please keep us posted. By the way sorry you find yourself here the club nobody wanted to join. Best wishes-Take Care-God Bless-Russ

  • Logan51
    Logan51 Member Posts: 468 Member
    edited November 2020 #3
    Beck

    What Russ said.

  • beck9851
    beck9851 Member Posts: 2 Member
    edited November 2020 #4
    wbcgaruss said:

    I Believe This Means

    There is definitely cancer cells found and cancer involved. So I would think the next step is a Cat scan with dye of the head and neck area or more likely a PET scan which is a whole-body scan sometimes referred to as eyes to thighs scan. Here they inject you with a radioactive dye and scan your whole body to check for cancer at the site and make sure it is nowhere else in the body before they go to the next step. They may also recommend some follow-up radiation because in the operation some cancer cells down to the cell level which can't be seen may be there and the radiation is like a mop-up operation of the errant cells. You may want to look through the Superthread at the top of the head and neck forum you may find something to help in there. Mainly you are doing the follow-up and the second opinion now so find out what your next step is and please keep us posted. By the way sorry you find yourself here the club nobody wanted to join. Best wishes-Take Care-God Bless-Russ

    Thanks for the info, I

    Thanks for the info, I received a CT scan with contrast prior to surgery but the only thing they saw was the cyst itself, along with another tiny one that is not of concern on my other side. I'm guessing they will have me do the PET scan next. Appreciate it!

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    edited November 2020 #5
    beck,

    It's always tough not to worry, but best to try to stay as calm as possible, until your next appointment.

    Hopefully, they got it all - and I wish you the best possible prognosis!

    mg

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    edited November 2020 #6
    MEC

    I too had MEC but it was a tumor on the base of my tongue.  As long as yours is low grade you don't have too much to worry about.  With me, surgery and low dose rads (57gys) got rid of it.  The time period for it to come back is within 2 years.  Docs worry about it travelling to the lungs.  My doctor wants to see me yearly for a total of 15 years, not the standard 5 like other cancers.  

    MEC is rare.  It affects juveniles and people in their 5th decade of life most of the time.  I was 55 when I first got it.  Took a year to finally get a diagnosis.  

    Maybe I didn't need rads but my doc wanted to be sure and I agreed.  It had already spread to my right neck lymph nodes so that was another surgery.  Why take a chance?  If they caught yours early you may not need anymore treatment.

    Good health going forward!

  • Gypsy28
    Gypsy28 Member Posts: 69
    edited January 2021 #7
    Hello, I haven't been on here

    Hello, I haven't been on here in a very long time but I had the exact same cancer and same place except mine was intermediate grade. After my parotidectomy and tumor removal I had radiation for six weeks because the margins were so close.. My extensive reading about all this tells me that most likely all you will need is follow up MRIs with contrast. Low grade is the best you can have under your circumstances. Good luck and continued healing.- Shirley.

  • MECsupport
    MECsupport Member Posts: 3
    edited February 2021 #8

    Hi Beck, I was going through these threads for more recent posts and see that you were also recently diagnosed. I am 33 and I am about 6 weeks out of surgery after being diagnosed with low grade MEC in Nov/Dec. My surgeon is very insistent that I don't need radiation since it's low grade. 4 lymphnodes also came out positive but he says the mass was very small. I went to see a radiation oncologist who says I MUST get radiation. Their pathology report shows my MEC is intermediate and not low grade. Rad onc says my risk of recurrence is at 30-40% without radiation and around 15% with radiation. My oncologist surgeon thinks my risk of recurrence is less than 5%, which is why he thinks imaging and close monitoring is the way to go. He says because I'm so young, I am risking diminishing my quality of life for a very long time. I am now trying to decide whether or not I should go for radiation, but keep feeling like there's no right answer here...

    I just posted the same message in another thread as well. It seems like MEC is so rare and there's not a lot of hard data on what to do next (evident by my rad onc and surgeon's polar opnions). I am inclined to trust my oncologist surgeon since he is the one who has seen this up close and he is known in the field to be very good. But at the same time, if this is intermediate, and considering spread to lymphnodes, it seems like the "normal" course is surgery followed by radiation (at least based on the 100s of posts I have read up on today).

    Would appreciate any thoughts! Sorry for also posting on another thread. I am still new to this :)

     

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