mucoepidermoid carcinima

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  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #22
    gmtaylor said:

    Mucoepidermoid Carcinoma
    My 52 year old father was diagnosed with mucoepidermoid carcinoma of the paraded and saliva glands. It has gone into one side of lymphnodes. He is a pastor at a small church and does not have insurance. It has been nearly 2 and a half months since the diagnosis and nothing has happened. We have to go through the VA. He is starting radiation treatments this week and we are just now meeting witha surgeon on Friday afternoon to discuss surgery. They believe it to be stage 4. I'm their 26 year old daughter trying desperately to figure something out while all of us holding down jobs. PLEASE give an advice you may have for our family. Thanks.

    Mucoepidermoid Carcinoma
    Hi Everyone,

    I was lucky enough to find this site yesterday. My doctor told me that this form of cancer is very rare and the treatment options aren't widely known. He suggested surgery followed by chemo and radiation.

    He gave me the worst case scenario and it surely scared my wife and I. My cancer was found after a sinus infection. There's been a lump on the right side of my neck for almost a year. Four different doctors have dismissed it with the exception of my ENT. She hit the roof when I told her that. She scoped me and found a 4x3cm mass on the base of my tongue. Did a biopsy and referred me to the best head and neck surgeon in Las Vegas. The PET scan showed it had metastasized to my right lymph node, ergo the lump. Stage 3.

    Had surgery 14 days ago to remove the mass on my tongue and was met with good news. The cancer was contained to one area and he was able to get most if not all. The next surgery is to remove the lymph node and those surrounding it, plus move my left salivary gland to the center of my mouth to help me keep my teeth after radiation.

    Luckily, only low dose radiation is in store for me so I don't know how much damage that will do to my mouth. Five weeks worth I'm told.

    This is by far the worst and most painful thing I've ever encountered. No food or water for four days after my surgery and ended up back in the hospital dehydrated. IV fluids and some painful soup got me home.

    I am very pleased to read about all your experiences and now feel very blessed on my outcome. There is still a good deal of pain but nothing like the first week.

    To see so many young people with this is upsetting. From what I read it said it normally affects children and those in their fifth decade of life. I'm 57.

    Glad to be here,

    Tommy
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #23
    tommyodavey said:

    Mucoepidermoid Carcinoma
    Hi Everyone,

    I was lucky enough to find this site yesterday. My doctor told me that this form of cancer is very rare and the treatment options aren't widely known. He suggested surgery followed by chemo and radiation.

    He gave me the worst case scenario and it surely scared my wife and I. My cancer was found after a sinus infection. There's been a lump on the right side of my neck for almost a year. Four different doctors have dismissed it with the exception of my ENT. She hit the roof when I told her that. She scoped me and found a 4x3cm mass on the base of my tongue. Did a biopsy and referred me to the best head and neck surgeon in Las Vegas. The PET scan showed it had metastasized to my right lymph node, ergo the lump. Stage 3.

    Had surgery 14 days ago to remove the mass on my tongue and was met with good news. The cancer was contained to one area and he was able to get most if not all. The next surgery is to remove the lymph node and those surrounding it, plus move my left salivary gland to the center of my mouth to help me keep my teeth after radiation.

    Luckily, only low dose radiation is in store for me so I don't know how much damage that will do to my mouth. Five weeks worth I'm told.

    This is by far the worst and most painful thing I've ever encountered. No food or water for four days after my surgery and ended up back in the hospital dehydrated. IV fluids and some painful soup got me home.

    I am very pleased to read about all your experiences and now feel very blessed on my outcome. There is still a good deal of pain but nothing like the first week.

    To see so many young people with this is upsetting. From what I read it said it normally affects children and those in their fifth decade of life. I'm 57.

    Glad to be here,

    Tommy

    Tommy
    Hi there. Hoping all goes well for you with your treatment. I am interested in hearing more about them moving the left salivary gland, I had to have my left one removed entirely and my zero saliva is just terrible. Do they leave the salivary gland there once it's moved? I am thinking this is to get it out of the way for the path of radiation, and this will preserve your salivary function? I really hope you will stick around and give us an update about how that all turns out and works for you. Thanks.

    Wishing you the best-

    Sweet
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #24
    sweetblood22 said:

    Tommy
    Hi there. Hoping all goes well for you with your treatment. I am interested in hearing more about them moving the left salivary gland, I had to have my left one removed entirely and my zero saliva is just terrible. Do they leave the salivary gland there once it's moved? I am thinking this is to get it out of the way for the path of radiation, and this will preserve your salivary function? I really hope you will stick around and give us an update about how that all turns out and works for you. Thanks.

    Wishing you the best-

    Sweet

    Salivary Gland
    Thanks Sweet,

    I do intend to stick around as all of you are the only ones who understand this cancer type. And yes, the reason for repositioning the left salivary gland to the center is so I don't lose all my saliva. The doctor will instruct the radiation team to not hit anywhere near my chin. His goal is to save all my teeth.

    Wishing everyone a Happy Thanksgiving and if you can eat, enjoy it. Still soft foods for me but I'm not complaining.

    Tommy
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #25
    tommyodavey said:

    Salivary Gland
    Thanks Sweet,

    I do intend to stick around as all of you are the only ones who understand this cancer type. And yes, the reason for repositioning the left salivary gland to the center is so I don't lose all my saliva. The doctor will instruct the radiation team to not hit anywhere near my chin. His goal is to save all my teeth.

    Wishing everyone a Happy Thanksgiving and if you can eat, enjoy it. Still soft foods for me but I'm not complaining.

    Tommy

    Tommy
    Thank you! Happy Thanksgiving to you.

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