Adenoid Cystic Carcinoma

dj4381
dj4381 Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
My name is Debbie. I was diagnosed with ACC in March 2003. I had a large portion of my upper palate removed and now wear an obturator. I don't have anyone in my community that has gone thru this. I had 6 weeks of radiation. I just want to meet someone who has this disease and visit. I feel all alone out here.

Comments

  • cherrie
    cherrie Member Posts: 38
    edited June 2 #2
    Hi Debbie! I am from the thyroid cancer, but I went on reading other topics and came to yours. I know I can't tell you anything of your type but I can tell you that you are not alone if you need a friend I am here to talk with you. All I can tell you is that I have been a cancer patient for almost 16 yrs I am now 34yrs old. So I know what you go through except different treatments. I will have you in my prayers.
  • asforme
    asforme Member Posts: 1
    edited June 2 #3
    Hi Debbie,
    I was just diagnoised with Adenoid Cystic Carcinomia on April 4, 2005.
    Sounds like the surgury they want to preform on me is what you had.
    I would love to talk to you.
    I hope you are doing well.
    Lilly
  • RuthieM
    RuthieM Member Posts: 1
    #4
    Hi Debbie, I just found this website- better late than never.I was diagnosed with ACC of the Parotid Gland in Feb. of '04, had surgery and radiation through June of '04. I'd love to chat if you're still looking for company...My name is Ruthie and I'm in NJ, age 48.
  • bella1985
    bella1985 Member Posts: 1
    #5
    RuthieM said:

    Hi Debbie, I just found this website- better late than never.I was diagnosed with ACC of the Parotid Gland in Feb. of '04, had surgery and radiation through June of '04. I'd love to chat if you're still looking for company...My name is Ruthie and I'm in NJ, age 48.

    madam ruthie. i also have
    madam ruthie. i also have ACC parotid gland, i was diagnosed last november 2011. im so young and still single.i want to have my family own my own..do you think i would live for 10 yrs more?
  • CivilMatt
    CivilMatt CSN Member Posts: 4,725 Member
    #6
    bella1985 said:

    madam ruthie. i also have
    madam ruthie. i also have ACC parotid gland, i was diagnosed last november 2011. im so young and still single.i want to have my family own my own..do you think i would live for 10 yrs more?

    start a new thread
    bella 1985,

    If you truly want feed back start a new thread with your questions. Often the older threads are by passed by others.

    Best,

    Matt
  • meaganb
    meaganb Member Posts: 244 Member
    #7
    bella1985 said:

    madam ruthie. i also have
    madam ruthie. i also have ACC parotid gland, i was diagnosed last november 2011. im so young and still single.i want to have my family own my own..do you think i would live for 10 yrs more?

    Bella1985, I agree with
    Bella1985, I agree with Matt. This thread is really old. You can make a new one. I also had an ACC diagnosis. I am 27 years old so I understand the young part.:) there are several of us on this board with this particular diagnosis. You are not alone. Please continue to post and look for encouragement here!
  • lana101
    lana101 CSN Member Posts: 2 Member
    #8

    Hello

    I know this is old forum but will try anyway…I have been sort of diagnosed with ACC in parotid but the ultrasound guided biopsysaid it looks very much like ACC in superfisicial. Excitional frozen biopsy recommend. Mayo clinic's is the only one that does frozen biopsy like this. Not sure if Md Anderson does. MRI was suspicious of this type but also stated mixed benign and malignant. We talked to oncologist head and neck and they too said this is hard to diagnose sometimes and excisional biopsy may be considered if FNA is inconclusive or if a definitive diagnosis is needed before surgical intervention.  I don't want a total parotidectomy if I only have it in superifiscial area. One stated he just does total and that seems insensitive to the high risk of facial paralysis and Frey syndrome. I already have some residual facial nerve damage from bells palsy back in 1990 but most came back except have mild nerve damage but no one really notices much. I was told I was high risk of permanent paralysis because of this. I was wondering if anyone did extra capsular dissection of just the acc tumor or will this cause seeding for it to spread more. I dont have it in lymph nodes in neck …well at least the Pet scan and MRI stated it was clear. So it appears to be a stage 1 maybe in between stage 1 and stage 1 due to the size so that seems good I guess right. Some of the surgeons are not up front about what all happens because I researched this well and it makes me sad that their is no real concern for patients quality of life afterwards. Any information regarding surgery and aftercare would be greatly appreciated. Thanks Sorry in advance for any typo's but I am also in a lot of pain in lumbar.

    Lana

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