adenoid cystic carcinoma

bryanna21
bryanna21 Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
I was just wondering if anyone had any advice about thistype of cancer. My father was diagnosed a month ago with it, had surgery to remove the tumor(6mm). They know have to do radiation to get the rest, but he's hestitant about radiation. Thanks for any help and good luck to everyone

Comments

  • JB150
    JB150 Member Posts: 4
    #2
    I had this same type of cancer.I live in Ok. but went to UCLA Med Ctr to have my surgery. They removed my tongue and made a free flap. Also took lots of lymph nodes out for a precaution. I did have some radiation but did not finish the whole amount to be done. I just couldn't take it anymore. I don't swallow so was unable to rinse my throat etc. like others could. I would be glad to answer any questions you have and share more information if you would like. Here is my e mail address jbtwelvefan@aol.com
  • ryeado
    ryeado Member Posts: 2
    #3
    JB150 said:

    I had this same type of cancer.I live in Ok. but went to UCLA Med Ctr to have my surgery. They removed my tongue and made a free flap. Also took lots of lymph nodes out for a precaution. I did have some radiation but did not finish the whole amount to be done. I just couldn't take it anymore. I don't swallow so was unable to rinse my throat etc. like others could. I would be glad to answer any questions you have and share more information if you would like. Here is my e mail address jbtwelvefan@aol.com

    although your message is a year old I hope to find you well and still out there-I am trying to find out about osteoradionecrosis which I have developed since my neutron radiation in 1997-the cancer hasn't returned but this is a terrible result of radiation-I am now unable to eat or talk because of the multiple surgeries on my neck and jaw--any ideas?
  • rosey982
    rosey982 Member Posts: 1
    #4
    Hi. My name is Rose. I was diagnoised with adenoid cystic carcinoma of the left salivary gland in Dec. 2003. I had a 5mm solid tumor removed and now I am on my fourth week of IMRT radiation therapy. It is getting a little rough. The horrible taste in your mouth and the sores but it is my only alternetive at this time.
  • LAB7143
    LAB7143 Member Posts: 1
    #5
    hello, i just read your message this am , my brother has this cancer , he was diagnosed 1 year ago in feb, but was misdiagnosed for 2 years prior to that . this past sept , he had his 1st surgery , it went better than anyone had hoped . he had chemo and radiation 1st , then the surgery .well i can say that it was not easy at all , but was necessary , he made it threw .my advice to him and anyone else is to have a strong support and to way the options .god bless .
  • s
    s Member Posts: 6
    #6
    radiation
    I had same kind of cancer and was told that chemo therapy did not work for this type of cancer.

    Call SPORES Head and Neck support group. Ask them about Laser surgery story.

    Call MD Anderson, see about Proton Radiation.

    See if there is something to protect the teeth from radiation.

    Ask questions...... Better to get the radiation from a major cancer center with coordinated specialist,

    Get a feeding tube, PEG tube before starting.

    Hope this helps, but my mouth is still dry and that has been 6 years ago.

    Make sure the surgeon gets clean margins.

    Good luck. God Bless.

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