Parotid Cancer

scsimodem
scsimodem Member Posts: 4
edited March 2014 in Rare and Other Cancers #1
I was diagnosed in 1998 with acinic cell carcinoma in my left parotid gland. I have heard that this is very rare, especially in children. I was 15 at the time, and judging from the size of it, it could have gotten there as early as when I was 11-12, maybe even 10. I was wondering if anyone else knew anything about this or has had it as a child. On a more positive note, I hit the 5 year mark at the end of this month, with the only long term effects being slight numbness and soreness of the gland as well as Frye's Syndrome, a condition that causes me to sweat on my left cheek whenever I salivate heavily.

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    I have seen people with this cancer on the ACOR rare-cancer list. lanesharon@yahoo.com
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #3
    oops, forgot to give you this website (be patient it takes a while to display):
    http://www.aciniccell.org/
  • mnm_guy
    mnm_guy Member Posts: 2
    #4
    I was diagnosed when I was 13, that was 26 1/2 years and 5 surgeries ago
  • maduro
    maduro Member Posts: 1
    #5
    My parotid gland surgery also left me with severe Fry's Syndrome, profuse dripping and redness even from chewing gum. I read about a new treatment for that, using Botox, it's supposed to be quick and easy. I've been hunting for a plastics, or neurology, or head and neck surgeon who has experience with that in the SF area. Any leads would be appreciated. Thanks~
  • Monika1210
    Monika1210 Member Posts: 3
    #6
    maduro said:

    My parotid gland surgery also left me with severe Fry's Syndrome, profuse dripping and redness even from chewing gum. I read about a new treatment for that, using Botox, it's supposed to be quick and easy. I've been hunting for a plastics, or neurology, or head and neck surgeon who has experience with that in the SF area. Any leads would be appreciated. Thanks~

    I had a total left parotidectomy in 1978(mucoepidermoid carcinoma), which has also left me with Frye syndrome. I roll antiperspirant on my neck, and voila, no sweat!
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • Friendofafighter
    Friendofafighter Member Posts: 2
    #8
    Monika1210 said:

    I had a total left parotidectomy in 1978(mucoepidermoid carcinoma), which has also left me with Frye syndrome. I roll antiperspirant on my neck, and voila, no sweat!

    Looking for hope
    My friend was dx with stage four and I'm seaching for hope for her. She had her right paratid removed and finished radiation and chemo... Her first pet scan is Tuesday... Can you tell me your stage at time of dx? It's rare and you seem to have won the battle.... Any advice would be appreciated
  • MirandaB
    MirandaB Member Posts: 1
    #9
    I am recently diagnosed
    Im 16 and just got diagnosed with mucoepidermoid carcinoma in my right parotid gland. In a couple days I will have my second surgery to get the rest of the cancer out. Afterwards I will have to get radiation treatments. Does anyone know the side effects?
  • mixleader
    mixleader Member Posts: 267 Member
    #10
    MirandaB said:

    I am recently diagnosed
    Im 16 and just got diagnosed with mucoepidermoid carcinoma in my right parotid gland. In a couple days I will have my second surgery to get the rest of the cancer out. Afterwards I will have to get radiation treatments. Does anyone know the side effects?

    Side Effects
    Have you been to the Head and Neck Cancer Board? There is a lot of information there about those of us who have had radiation treatments to that area. Many knowledgeable and nice folks are there who can offer much advice and support. I had 30 radiation treatments to the right side of my face and neck. I got through them without severe pain or a feeding tube, but every case is different. Good luck and lean on the nice folks at H&N for some help.

    Roger
  • Ron M.
    Ron M. Member Posts: 1
    #11
    mixleader said:

    Side Effects
    Have you been to the Head and Neck Cancer Board? There is a lot of information there about those of us who have had radiation treatments to that area. Many knowledgeable and nice folks are there who can offer much advice and support. I had 30 radiation treatments to the right side of my face and neck. I got through them without severe pain or a feeding tube, but every case is different. Good luck and lean on the nice folks at H&N for some help.

    Roger

    Acinic Cell has spread to both lungs, treatment? Outlook?
    My brother has recently found that he has many spots of Acinic Cell in both of his lungs. He had a large Parotid tumor removed Feb, 2011, which was followed up by radiation treaments. Any information on lung treatment and/or what the future outlook may be.

    Thanks, Ron
  • Laurie H
    Laurie H Member Posts: 1
    #12
    Just diagnosed

    I have had this lump since I was young and over the years asked my doctor what it was. obody knew. Then last year it started to hurt when I touched it. I told my doctor that it was changing and he told me to stop touching it. When it began to hurt all the time I began to advocate for myself more strongly and insisted I be seen by an ENT. And well know I have cancer. I have not been to see the oncologist yet but will be going next week. I have been told that more surgery, radiation or wait and see are my options. i am not interested in the wait and see option as I have already had cervical cancer. Does anyone have suggetions on which course of treatment is best. I have been given very little information as of yet and scared so could use any advice available.

    Thank you 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #13
    Laurie H said:

    Just diagnosed

    I have had this lump since I was young and over the years asked my doctor what it was. obody knew. Then last year it started to hurt when I touched it. I told my doctor that it was changing and he told me to stop touching it. When it began to hurt all the time I began to advocate for myself more strongly and insisted I be seen by an ENT. And well know I have cancer. I have not been to see the oncologist yet but will be going next week. I have been told that more surgery, radiation or wait and see are my options. i am not interested in the wait and see option as I have already had cervical cancer. Does anyone have suggetions on which course of treatment is best. I have been given very little information as of yet and scared so could use any advice available.

    Thank you 

    I can't help you

    But I read your story and wish you the very best.  I am sorry to hear you have to fight this beast again, and you sound like one very smart woman.  God bless you and never give up.

  • jjdufour
    jjdufour Member Posts: 1 Member
    #14
    Acenic Cell Carcinoma

    I had my first surgery for my lump under my right ear. Doc did not test before he went in so we were all prepared for just about a 30 minute surgery...that turned into 3 1/2 hours. The cancer had spread up into my face in and around my facial nerves. At that time the Doc was confident he got it all. So no further treatment.

    In July of this year I started getting sharp ear pains and noticed some swelling in my right ear/neck area. After much persistance on my part I finally got a Doc to listen to me and had an MRI. Cancer is back! This time in the deep lobe of the Parotid Gland and possibly in lymph nodes. Surgery will happen this Monday 9/19/16. I was told that if he had to he would cut the facial nerves in order to get all the cancer! Then I will have radiation in months to follow...I'm 52 years old and this is the 4th time I've had cancer. I have to say this one is scaring me. Didn't know it could matastize (sp?) to lungs or anywhere else - just hadn't thought about that. Any experiences you can share would be very much appreciated. Thanks!

  • mspatfarmer
    mspatfarmer Member Posts: 1 *
    #15

    I have had mucoepidermoid cancer surgery. They got small margins. It was high grade. I had 25 lymph nodes removed from my neck as a preventative procedure. They were all clear. I am considering radiation as a precautionary procedure. I am worried about side effects. 30 treatments required and centered on the tumor site. Any suggestions. My other option is wait and see.

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