Anyone Else HNPCC

carrieh
carrieh Member Posts: 146 Member
in Colorectal Cancer #1

Hi,

I was hoping to find someone else with HNPCC (hereditary non polyposis colon cancer). Well, that sounds horrible; I hope no one else has it..but I would like someone to talk to about recurrance since we have such a high rate..over 80 percent. We also have the same risk for uterine, ovarian, and so forth... I was just curious if anyone with HNPCC has been clear for a few years etc...the doctors are so negative sometimes I want to tell them to zip it! I don't care what the statistics are! I feel like they want to treat me for things that haven't happened yet and I don't like it one bit.

Thanks,
Carrie

Comments

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #2
    Dear Carrie,

    I just want to support you in your view. No matter what the statistics say, you cannot live in fear. Do everything you can to manage this issue, but live your life. We have to manage our diet, weight, bad habits, stress too. These things kill people in their 30's and 40's as well.

    i wish you good luck with everything.

    Laz

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #3
    Have you checked at the Colon Club forum?

    I feel funny directing people away from CSN, but because CC is a forum for those with crc who under the age of 50, they sometimes have more input on conditions like these that tend to show up in people when they're younger.  Anyway, I'm pretty sure there are some threads there about this.  Might be worth checking.

    As for the statistics, I always try to remember that we are individuals, and won't necessarily fall into the statistical average.  My own tumor type has very little in the way of 5 year prognosis stats, as not many people make it that far, but here I am, almost 5 years post-dx and still NED (i think...and hope).   So you just never know, and it makes life a lot more bearable to live as if we will beat the odds!

  • carrieh
    carrieh Member Posts: 146 Member
    #4
    annalexandria said:

    Have you checked at the Colon Club forum?

    I feel funny directing people away from CSN, but because CC is a forum for those with crc who under the age of 50, they sometimes have more input on conditions like these that tend to show up in people when they're younger.  Anyway, I'm pretty sure there are some threads there about this.  Might be worth checking.

    As for the statistics, I always try to remember that we are individuals, and won't necessarily fall into the statistical average.  My own tumor type has very little in the way of 5 year prognosis stats, as not many people make it that far, but here I am, almost 5 years post-dx and still NED (i think...and hope).   So you just never know, and it makes life a lot more bearable to live as if we will beat the odds!

    Thanks you guys, Iaappreciate

    Thanks you guys, Iaappreciate the advice so very much. I try to never think of myself as a nurse...really I've had almost everything removed where it's"supposed to strike"...as long as my biopsy is good news, hopefully I can beat the odds. 

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