mucoepidermoid carcinoma

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tee12586
tee12586 Member Posts: 5
edited April 2016 in Head and Neck Cancer #1

I was recently diagnosed with mucoepidermoid carcinoma of my Parotid Gland. I need to express that tests (MRI with contrast, physical exams, MRI, CT scans) were done and the results of this being cancer were not determined until I had my surgery in Feb 2011. I am at the end of a 7 week radiation treatment and the doctors stated a team of doctors will discuss whether or not a CT scan is nec. Now I have couple of questions. I have had a lot of medical conditions during the same time that I found this lump like Gall Bladder pain, headaches, sinus issues, eyes blurry, and pain in my thyroid. How does a pathology report know if this cancer has spread? Or if the cancer has effected the lymph nodes? My pathology report was a T1NXMO. If anyone can explain how determinations are made or how a doctor is certain that its not in other areas, I would appreciate it. Also, anyone with the same cancer, please give me a shout out. Thanks!

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  • ekdennie
    ekdennie Member Posts: 238 Member
    #2
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    Mucoepidermoid carcinoma
    tee-
    welcome to this site...you will find a lot of people who are a great support. I am not on very often any more as I am trying to spend little more time with my family (I have three kids, ages 5, 3, and 1). I also was diagnosed with Mucoepidermoid Carcinoma (MEC), but mine was on my hard palate and had grown into my maxillary sinus. T2N0M0 (Interediate grade, stage IV clinically, downgraded to stage 2 based on pathology).
    MEC can appear to just be a lump with both CT and MRI's. It isn't until a pathologist looks at it that they can determine if it is cancer or not. the pathology report can not tell for certain that the tumor has spread, but they can tell if the types of cells that are cancerous are a type that would generally spread. Only a PET scan can determine if there is spread, but you have to be a certain amount of time away from radiation before a dr will do one...I am not sure how long, but my ENT said it might not even be necessary. I had one before surgery, but that was based on the size of my tumor (golf ball size).
    with MEC you need to ask you dr.'s what stage and grade you were as well...if you haven't already. I also found out what variety of MEC I have as there are multiple cells involved in MEC's you can have different varieties. mine was MEC clear cell variety.
    Let your doctors know about your other issues and make sure you have one doctor who has all of your records...I had copies of everything sent to my regular physician...he now has a huge folder, but he has made sure that all of my doctors are on the same page.

    well I need to run and get my kids into bed! HUGE HUGS...we all need them sometimes! Happy and cancer free (until I am ever told otherwise...which I pray daily will never happen). message me if you need any info on MEC...or you can check the other posts I have put on here.
    elizabeth
  • tee12586
    tee12586 Member Posts: 5
    #3
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    ekdennie said:

    Mucoepidermoid carcinoma
    tee-
    welcome to this site...you will find a lot of people who are a great support. I am not on very often any more as I am trying to spend little more time with my family (I have three kids, ages 5, 3, and 1). I also was diagnosed with Mucoepidermoid Carcinoma (MEC), but mine was on my hard palate and had grown into my maxillary sinus. T2N0M0 (Interediate grade, stage IV clinically, downgraded to stage 2 based on pathology).
    MEC can appear to just be a lump with both CT and MRI's. It isn't until a pathologist looks at it that they can determine if it is cancer or not. the pathology report can not tell for certain that the tumor has spread, but they can tell if the types of cells that are cancerous are a type that would generally spread. Only a PET scan can determine if there is spread, but you have to be a certain amount of time away from radiation before a dr will do one...I am not sure how long, but my ENT said it might not even be necessary. I had one before surgery, but that was based on the size of my tumor (golf ball size).
    with MEC you need to ask you dr.'s what stage and grade you were as well...if you haven't already. I also found out what variety of MEC I have as there are multiple cells involved in MEC's you can have different varieties. mine was MEC clear cell variety.
    Let your doctors know about your other issues and make sure you have one doctor who has all of your records...I had copies of everything sent to my regular physician...he now has a huge folder, but he has made sure that all of my doctors are on the same page.

    well I need to run and get my kids into bed! HUGE HUGS...we all need them sometimes! Happy and cancer free (until I am ever told otherwise...which I pray daily will never happen). message me if you need any info on MEC...or you can check the other posts I have put on here.
    elizabeth

    Mucoepidermoid carcinoma
    Elizabeth,

    Thanks for the details, this has been very helpful. I am happy to hear you are cancer free, and hope you remain that way. I will keep you in my prayers. God Bless the little ones too.

    Tee
  • tee12586
    tee12586 Member Posts: 5
    #4
    Options
    ekdennie said:

    Mucoepidermoid carcinoma
    tee-
    welcome to this site...you will find a lot of people who are a great support. I am not on very often any more as I am trying to spend little more time with my family (I have three kids, ages 5, 3, and 1). I also was diagnosed with Mucoepidermoid Carcinoma (MEC), but mine was on my hard palate and had grown into my maxillary sinus. T2N0M0 (Interediate grade, stage IV clinically, downgraded to stage 2 based on pathology).
    MEC can appear to just be a lump with both CT and MRI's. It isn't until a pathologist looks at it that they can determine if it is cancer or not. the pathology report can not tell for certain that the tumor has spread, but they can tell if the types of cells that are cancerous are a type that would generally spread. Only a PET scan can determine if there is spread, but you have to be a certain amount of time away from radiation before a dr will do one...I am not sure how long, but my ENT said it might not even be necessary. I had one before surgery, but that was based on the size of my tumor (golf ball size).
    with MEC you need to ask you dr.'s what stage and grade you were as well...if you haven't already. I also found out what variety of MEC I have as there are multiple cells involved in MEC's you can have different varieties. mine was MEC clear cell variety.
    Let your doctors know about your other issues and make sure you have one doctor who has all of your records...I had copies of everything sent to my regular physician...he now has a huge folder, but he has made sure that all of my doctors are on the same page.

    well I need to run and get my kids into bed! HUGE HUGS...we all need them sometimes! Happy and cancer free (until I am ever told otherwise...which I pray daily will never happen). message me if you need any info on MEC...or you can check the other posts I have put on here.
    elizabeth

    hi

    Are you still on the site?

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #5
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    tee12586 said:

    hi

    Are you still on the site?

    MEC

    I didn't catch your post back then but I too had the same cancer but on the base of my tongue. 3x5cm tumor removed along with another chunk of my tongue but had clear margins.  A radical right neck dissection took place a month later once I had healed enough.

     

    How are you doing now?

     

    Tom

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