The pros and cons of genetic testing?

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son of hal
son of hal Member Posts: 117
in Colorectal Cancer #1
I'm considering requesting getting tested for Lynch syndrome and I'm wondering what people think about that. It is possible I meet the criteria for HNPCC and I think I should get tested as well as my kids. My oncologist never brought it up nor has any other doctors involved in my care, but that is common from what I hear. Apparetly, HNPCC involves several different cancers that all run in my family. My maternal grandfather passed from stomach cancer, my Mom had skin cancer and passed from Gliablastoma (brain cancer), one of my sisters has had skin cancer twice and I have colorectal cancer. I would think that shows a pattern but no doctors have shown concern. My concern is for my kids health but I'm also concerened how the testing would affect them in the future for insurance purposes.
Any input is greatly appreciated.
Thanks, CJ

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  • coloCan
    coloCan Member Posts: 1,944 Member
    #2
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    Yes, better safe than sorry as Lynch syndrome does leave one
    more susceptable to cancers in addition to CRC, from what i've read......steve
  • tommycat
    tommycat Member Posts: 790 Member
    #3
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    Genetic testing may open up
    Genetic testing may open up Pandora's box with the insurance companies, but that's a fight that going to happen anyway as more and more people get tested.
    My husband and I have both had ours done, for ourselves and for our children. Interestingly, my results showed I was 4x more likely than the general population to develop colorectal cancer. Perhaps if I was armed with this knowledge three years ago, I would have saved myself from being misdiagnosed and the cancer could have been caught earlier.
    Knowledge is Power.
  • northernlites
    northernlites Member Posts: 96
    #4
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    Hi CJ, I was tested for
    Hi CJ,
    I was tested for Lynch Syndrome the day I found out I had a tumor in my colon(after a colonoscoy).When the test came back positive, I was then given many options from my surgeon before the surgery. He immediately set me up with a Genetic counselor and we discussed the reccurance of all the other cancers I could get, along with the high possibility of reccurence of colon cancer again if I chose to do the colon resection. I made the decision to have all of the colon removed. After the surgery I was staged at IIaT3. Since then I am being monitored every 6 months for the other possible cancers that may occur. I look at this as a chronic illness now instead of cancer. Both my daughters have been tested and are positive. The oldest one(28) just had a colonoscopy and they found a polyp and removed it. I think I saved her life by having the genetic testing done, otherwise she would not had a colonoscopy until she was fifty. may have been too late by then....Since all of this has happened to me over the last 8 months, my dad has developed skin cancer and my youngest brother just found out he has colon cancer. I am glad I made the decision to do the testing when I did.

    Tessa
  • son of hal
    son of hal Member Posts: 117
    #5
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    northernlites said:

    Hi CJ, I was tested for
    Hi CJ,
    I was tested for Lynch Syndrome the day I found out I had a tumor in my colon(after a colonoscoy).When the test came back positive, I was then given many options from my surgeon before the surgery. He immediately set me up with a Genetic counselor and we discussed the reccurance of all the other cancers I could get, along with the high possibility of reccurence of colon cancer again if I chose to do the colon resection. I made the decision to have all of the colon removed. After the surgery I was staged at IIaT3. Since then I am being monitored every 6 months for the other possible cancers that may occur. I look at this as a chronic illness now instead of cancer. Both my daughters have been tested and are positive. The oldest one(28) just had a colonoscopy and they found a polyp and removed it. I think I saved her life by having the genetic testing done, otherwise she would not had a colonoscopy until she was fifty. may have been too late by then....Since all of this has happened to me over the last 8 months, my dad has developed skin cancer and my youngest brother just found out he has colon cancer. I am glad I made the decision to do the testing when I did.

    Tessa

    Thanks for the feedback so far.
    Wow, that is amazing Tessa. Why did they test you so soon like that? How old were you when diagnosed? I was a month after turning 46 (but had symptoms for six months)and according to the assesment criteria 45 is the average age with Lynch. Did your insurance pay for it? I was told by mine that they rarely cover it so I'm not sure how to handle that. I hear it can be anywhere from $500.00 to $3000.00 and I already have about ten grand in medical debt as it is. Always another thing to contemplate.
    CJ
  • son of hal
    son of hal Member Posts: 117
    #6
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    tommycat said:

    Genetic testing may open up
    Genetic testing may open up Pandora's box with the insurance companies, but that's a fight that going to happen anyway as more and more people get tested.
    My husband and I have both had ours done, for ourselves and for our children. Interestingly, my results showed I was 4x more likely than the general population to develop colorectal cancer. Perhaps if I was armed with this knowledge three years ago, I would have saved myself from being misdiagnosed and the cancer could have been caught earlier.
    Knowledge is Power.

    Thanks for the input
    Hi TC- What made you think you may have had the gene mutation? Did you have any first relatives with cancer? Who paid for your testing? Do you or your husband have any health plan changes as a result of the testing?
    Thanks, CJ
  • VickiCO
    VickiCO Member Posts: 917
    #7
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    Tested
    CJ, I was tested before my first surgery. The cost was around $3,000. My insurance at first said they would only pay $275, and my Son-in-law said he would pay the rest as he was concerned about his children, my grandkids. However, when the docs turned it in to the ins. company, they paid every penny. I tested negative, which was surprising since my family (father, aunts uncles, cousins) all had colon cancer.

    As far as information that the insurance company collects- they already have every piece of info they need as soon as you are diagnosed with cancer.

    Vicki
  • coloCan
    coloCan Member Posts: 1,944 Member
    #8
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    VickiCO said:

    Tested
    CJ, I was tested before my first surgery. The cost was around $3,000. My insurance at first said they would only pay $275, and my Son-in-law said he would pay the rest as he was concerned about his children, my grandkids. However, when the docs turned it in to the ins. company, they paid every penny. I tested negative, which was surprising since my family (father, aunts uncles, cousins) all had colon cancer.

    As far as information that the insurance company collects- they already have every piece of info they need as soon as you are diagnosed with cancer.

    Vicki

    P.S:here's something new you might want to know about Lynch
    nasdaq.com/article/myriad-genetics-study-finds-high-prevalence-of-mutations-in-the-pms2-gene-
    20120329-01600

    Apparently this is something else to look for, tho other genes cited were more common
  • northernlites
    northernlites Member Posts: 96
    #9
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    son of hal said:

    Thanks for the feedback so far.
    Wow, that is amazing Tessa. Why did they test you so soon like that? How old were you when diagnosed? I was a month after turning 46 (but had symptoms for six months)and according to the assesment criteria 45 is the average age with Lynch. Did your insurance pay for it? I was told by mine that they rarely cover it so I'm not sure how to handle that. I hear it can be anywhere from $500.00 to $3000.00 and I already have about ten grand in medical debt as it is. Always another thing to contemplate.
    CJ

    Hi CJ,
    I was 48 when I was
    Hi CJ,
    I was 48 when I was diagnosed. My insurance paid for the genetic testing which costs 5000.00. The results of the tests was the determining factor for me to make the decision to remove all of the colon. My surgeon is a colon cancer specialist who worked at the Mayo Clinic for 10 years. Not only that...but he had stage3 colon cancer 13 years ago! He is such an inspiration to me. I guess after hearing his story, I trusted him and his research of Lynch syndrome. Since then I am also doing alternative therapies as well such as IV vitamin supplements, and changing my diet as well.


    Tessa

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