Genetic Testing

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funnyguy
funnyguy Member Posts: 89
in Colorectal Cancer #1
Hi All, I'm a rectal cancer survivor. recently, based upon siblings starting to get a significant number of polyps, my doctors are asking me to consider genetic testing. I've showed no other signs of cancer or related. But they would like to get ahead of things, given that my siblings are much older than me.
What are your thoughts? I'm not sure that I want to know what might be lurking? or might happen? the docs say they can perform better screening if this is known.
isn't ignorance, bliss?

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  • northernlites
    northernlites Member Posts: 96
    #2
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    Hi,
    I was diagnosed in May
    Hi,
    I was diagnosed in May of colon cancer. Had surgery in June to remove all of my colon. My father had polyps removed at very early age and my brother as well at the age of 30. My doctors insisted I get a genetic test before my surgery. I am positive for Lynch syndrome. That was the reason for removing all of the colon. My surgeon said I had an 85% chance of reccurence because of the lynch syndrome. I recently had my daughters tested. Both of them tested positve for Lynch. The oldest daughter who is 27 had a colonoscopy a week later and they removed several polyps. I think the genetic testing probably saved her life. Due to her young age she would have never had a colonoscopy until 50. My oncologist screens me every 3 months now and has set up a routine screening for other cancers that may occur. These screenings will continue for the rest of my life. So for me and my family the testing was worth it. Do I think about all of the other cancers that can happen? of course I do, but Maybe I saved my daughter's life.

    Tessa
  • funnyguy
    funnyguy Member Posts: 89
    #3
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    northernlites said:

    Hi,
    I was diagnosed in May
    Hi,
    I was diagnosed in May of colon cancer. Had surgery in June to remove all of my colon. My father had polyps removed at very early age and my brother as well at the age of 30. My doctors insisted I get a genetic test before my surgery. I am positive for Lynch syndrome. That was the reason for removing all of the colon. My surgeon said I had an 85% chance of reccurence because of the lynch syndrome. I recently had my daughters tested. Both of them tested positve for Lynch. The oldest daughter who is 27 had a colonoscopy a week later and they removed several polyps. I think the genetic testing probably saved her life. Due to her young age she would have never had a colonoscopy until 50. My oncologist screens me every 3 months now and has set up a routine screening for other cancers that may occur. These screenings will continue for the rest of my life. So for me and my family the testing was worth it. Do I think about all of the other cancers that can happen? of course I do, but Maybe I saved my daughter's life.

    Tessa

    Thanks for this response. I
    Thanks for this response. I certainly can see why it makes logical sense for me and my kids. My struggle will be knowing too much and possibly taking pre-emtive actions.
  • cindybob
    cindybob Member Posts: 61
    #4
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    positive for Lynch as well
    Hi Funnyguy!
    Ignorance is bliss. But knowledge is power. My sister will not get tested and it worries me. She's older than I am, but....

    I did the genetic testing. I had colon cancer at age 36. That was before we knew about Lynch Syndrome. I tested for the BRCA I and II and they were negative. BUT I have a superstrong family history of several different cancers. Once the test for the gene mutation for colon cancer came out I did get tested. And I am positive. And I am REALLY very glad that I have had it done. Really it offers peace of mind more than you would think. Statically, being positive stinks, but knowing makes you and your doctors hypervigilant. I recently lost 25 pounds. I'm sure that it is stress related, but of course, my first fear is that "The Cancer is BACK!" So, my doctor shares my paranoia because he knows about the mutation. So, immediately he went into action and I am being tested like crazy. In fact, tommorrow I will be doing prep for my colonoscopy and endoscopy on Tuesday. So, pray for me to have an easy day tomorrow. Prep is the worst. UGH! So far every other test shows "no evidence of disease."
    The downside-I have two kids. I don't want them to have to get tested. I am waiting until they turn 18. My daughter is almost there. But that's the downside of heredity. The good part is that once the mutation is gone, it is gone, it does not skip a generation.
    Best of luck on whatever you decide, I am one that is very grateful to know.

    Hope this helps!
    Cindy Bob
  • cindybob
    cindybob Member Posts: 61
    #5
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    funnyguy said:

    Thanks for this response. I
    Thanks for this response. I certainly can see why it makes logical sense for me and my kids. My struggle will be knowing too much and possibly taking pre-emtive actions.

    too many pre-emptives
    I just read this part of your response. (too many pre-emptives.)
    I did a lot of pre-emptive surgeries. But I am a woman and I had extra parts that I could lose without missing them (much.) I think as long as you know and keep up with screenings, tests, etc. You won't have to do extra surgeries. But I don't know what you would feel comforable with. I hope that whatever you decide makes you feel better.
  • braelee2
    braelee2 Member Posts: 130
    #6
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    I was diagnosed. With stage
    I was diagnosed. With stage 3 colon cancer a year ago And I went and talk to the doctors about getting genitic testing after talking to them . I decided not to, because even if the test came back that it was, There still was not anything they could do the only thing it changed would be my kids have to be check a year eailer. And that I may get cancer again. And that was something I don't. Want to know or wait for.

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