Genetic testing??

cal79
cal79 Member Posts: 57
edited March 2014 in Colorectal Cancer #1
I know I have posted on this before, but it has come time for me to make a decision on HNPCC testing (although I have no family history, and my tumour was not consistent with the usual features, it is purely being done on an age basis - 25 at dx). Can anyone tell me their reasons for having / not having this done?

Cal :)

Comments

  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #2
    There is no history of colon cancer in my large family. I am the youngest of five and diagnosed at 46. I had genetic testing done because of my 3 children. I wouldn't want anyone to go through what I have gone through, esp. my children. All my genetic testing was negative. I was told it was a fluke in my DNA that caused the cancer.

    My children will still be watched closely. Two have been scoped already, only my 17 yo has not been scoped.

    Moe
  • debralla
    debralla Member Posts: 203 Member
    #3
    Moesimo said:

    There is no history of colon cancer in my large family. I am the youngest of five and diagnosed at 46. I had genetic testing done because of my 3 children. I wouldn't want anyone to go through what I have gone through, esp. my children. All my genetic testing was negative. I was told it was a fluke in my DNA that caused the cancer.

    My children will still be watched closely. Two have been scoped already, only my 17 yo has not been scoped.

    Moe

    Cal
    I had Genetic testing done a few months ago . So far all came back NEG . I have 3 children and wanted to have it done for them . There are certain Genetic forms like FAP that if my test would have come back positive for this my children would have needed testing done by age 10 . I am still going through more test in June to check for other forms . I was also checked because certain Chemo like innrinotcan (sp)can not be givin if this would have come back positive . I was told yesterday that this test came back neg as well . Being that you were diagnosed so young I would get tested esp if you have children .So like Moe said I too was diagnosed at 45 (stage 4) My Dr. said to still have my children tested early .
    TAKE CARE AND GOD BLESS.
    DEBRA
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
    OK, Cal, the dark cloud here. Even though it's supposed to be illegal, if the insurance pays for the test, and it shows positive, you get redlined (rates go up, etc). Also, somehow this is 'shared' with employers...hard enough to find a job with cancer 'behind' you...
    Yes, all of this is not supposed to happen, but does. If you have yourself or your kids tested, try to self-pay it...no record with the insurance company, and then keep the results to yourself.
    Hugs, kathi
  • chynabear
    chynabear Member Posts: 481 Member
    #5
    debralla said:

    Cal
    I had Genetic testing done a few months ago . So far all came back NEG . I have 3 children and wanted to have it done for them . There are certain Genetic forms like FAP that if my test would have come back positive for this my children would have needed testing done by age 10 . I am still going through more test in June to check for other forms . I was also checked because certain Chemo like innrinotcan (sp)can not be givin if this would have come back positive . I was told yesterday that this test came back neg as well . Being that you were diagnosed so young I would get tested esp if you have children .So like Moe said I too was diagnosed at 45 (stage 4) My Dr. said to still have my children tested early .
    TAKE CARE AND GOD BLESS.
    DEBRA

    I was diagnosed at age 27 and the first person to suggest genetics testing was my half-sister's gastro when he did her scope. I had zero risk factors. Cancer does not readily run in my family and nobody has had colon cancer of those who did have cancer.

    My follow-up oncologist has suggested I meet with the genetics counselor to explore my options. My sister was such a horrid b**** about this whole issue. I am now a horrible human being because I have thus far decided against the testing and we are no longer on speaking terms.

    The main person who would benefit from my genetics testing is my not-quite three year old daugther and she is still way too young for the test to affect her yet anyway. I already plan to have her scoped by age sixteen.

    The next person it would benefit is my sister, who I mentioned only shares half of my genes. I read a few studies done regarding genetics testing and have discovered that it is still a very new science. I only share half of the genes with her and she has by far a larger number of cancer risks on her mother's side than on my side (but she refuses to see that). I am very afraid that my test would come back neg; she would blow off getting tested or scoped; and would end up with colon cancer at a later stage because she had the "all clear" because that is what she wants from this testing; the saying that she won't get this cancer and doesn't have to pay their money for scopes and testing.

    Because it is a "new" science there is still a lot they don't know yet. Do a search on MSN or Google about genetics testing and see what you find. I know MSN ran an article about a month ago regarding this.

    My insurance company has just denied my appeal for highly suggested PET scans in which both of my oncologists were in agreement that I needed. They were denied based on the "lack of medical necessity." I had one node involved but they don't feel it medically necessary to PET me. Why would they pay for genetics testing which is a far less medical necessity?

    I also fear that based on the results the insurance company(s) would then deny any claim based on "existing condition" or something. I mean, what if I do have the gene. And then unfortunately my sister or my daughter get CRC and the insurance company denies their claim. Or they can't find coverage because they are at a higher risk?

    At this point, if I fould out I do have the freak gene and I have a much higher chance of the cancer coming back I don't think I could emotionally take that blow just yet. The thing that keeps me going is thinking that I have some control over this beast through diet, excercise and lifestyle changes that I have made to make me healthier.

    I've been poked, prodded, tested, poked and tested some more. I am just not ready to go through this test yet. Maybe at some point I will change my mind... but not yet.

    Sorry for the rambling and I hope this helps.

    Patricia
  • ccartwri
    ccartwri Member Posts: 82
    #6
    Cal
    I had the hnpcc testing done in a clinical trial at NIH. They were investigating the social and behavioral issues folks undergo when they decide on testing, etc.
    Bad things: possible discrimination, like Kathi said. It varies by state whether it is legal or not. I live in MD and it is illegal. Speak to a genetic counselor about this. Also, the test is not 100%. There are some false negs and false positives. And family relations are big. Like, in m family, there is so much guilt from my parents already, a pos test would have been very hard on them. But i wanted to know for my family. I have a young daughter. Also, you would have justification to get screened for other associated cancers if positive. HN{CC is highly associated with urinary cancers, and for women, ovarian and endometrial cancers. I think your next step is meeting with a genetic counselor.

    Claudia
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • JADot
    JADot Member Posts: 709 Member
    #8
    Hi Cal:

    I'm with Claudia - it's a good idea to get the testing so you can properly protect yourself.

    There is an unusually high correlation of colon cancer with ovarian (12% life time risk) and uterine cancer (60%! risk) for people who test positive for HNPCC. So, the more information you have, the better you can prepare.

    After being diagnosed with Stage II colon cancer with all the signature of HNPCC (right sided, multiple tumors, young age, mLH1 missing), I chose to do genetic testing, my results are not back yet.

    The Stanford genetics folks told me that at least in CA they cannot discriminate against you for anything uncovered in a genetics test. Also the Federal HIPAA law mandates that if you have been continuous covered before, you cannot be denied coverage. And, if you're a part of a group plan, they cannot even raise your rate about any other group rate, thanks to Senators Ted Kennedy and Nancy Kassabaum, and of course, Bill Clinton, who signed it into the law in 1996. I researched this closely recently because I've had to change insurance mid chemo, certainly with a "pre-existing" condition.

    So, by all means check with your state's insurance folks, and if at all possible, get the genetics test.

    Best of luck to you!

    Cheers,
    JADot

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