HNPCC

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cal79
cal79 Member Posts: 57
edited March 2014 in Colorectal Cancer #1
I was looking for some opinions on HNPCC testing. After my next surgery I have been referred to discuss it with the genetics counsellors.

From my view, the good things are; regular screening for related cancers (not covered without positive evidence of HNPCC), allows informed decisions about having children (50% is a big risk), and allows my family (especially my brothers who are around my age) to get adequate screening and testing where necessary.

The bad things I suppose are obvious, but on top of that you have all the difficulties of insurance (life, income protection and all the usual), and having to declare for job medicals etc.

Does anyone have any comments about this testing?

Thanks
Cal :)

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  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #2
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    I am in the process of having genetic testing done because I have 3 children. I am already uninsurable because of my cancer diagnosis. I was 46 when diagnosed and noone in my large family has colon cancer. I do not want my children to have to go through what I did.

    Maureen
  • Unknown
    Unknown
    #3
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  • neeliec
    neeliec Member Posts: 106
    #4
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    unknown said:

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    ditto! I did the same thing and for the same reasons. Some of my cousins had the test, so did my sister. The gene is in the family. I have already have uterine cancer and colon cancer. My four grown children know that they have to be screened frequently. Insurance pays because of the history. They do not need the added stigma of having insurance refused because they have the gene. I, on the other hand, will continue to be insured as long as I am under a group. Being a school teacher, I can't be refused by the group insurance, but if I ever had to quit teaching.... well that's another story. I am too paranoid to do the test. I'd rather just do the screenings often, as if. My doctor did not agree with me, and made a big deal of it, including putting it on my records. I guess at this point, I do not see the benefits of the test. One of my sisters has HNPCC, the other does not. Both of them are screened often and have avoided CA. I on the other hand have had several fights-- now stage 4 and still fighting. neelieC
  • HisJoy
    HisJoy Member Posts: 113
    #5
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    I'm another one who has decided to go with the testing. Just telling my children and siblings to be screened often isn't enough for me. I want them to KNOW which ones carry the gene so that they won't let ANYTHING slide. I have seen too many 20 and 30-somethings come down with the disease because no one would consider colon cancer in someone so young until the cancer had spread. If they have the gene, I feel like my kids have a better chance of getting care sooner. I already have told my mom to be screened, but she won't. If it turns out I have the gene, then I believe she'll go get it done, because if I have it, she definitely has it. I lost a great-grandmother and a grandmother to colon cancer. I don't want anyone else going through this and if it takes genetic testing to get everyone on board, then that's what I'll do.

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