Genetic diagnosis!!

vchildbeloved
vchildbeloved Member Posts: 133
edited March 2014 in Colorectal Cancer #1
Hi, Valerie again, stage 3 1 positive node, had surgery and now on chemo. I read some wonderful stories of survival and NED's. I was wondering if any one of you have been more concerned than other survivors because you come from a family such as mine that has a family history of colon cancer; and the stats suggests that we are more prone to get reoccurrence of cancer than everyone else, which most often finds itself in the liver, lungs and other organs. The percentage is greater according to some reports. Are there any long-time survivors who fit into that category?

Thx

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    My grandfather died from colon cancer. My mom has had uterine cancer (another place common). I have had rectal cancer. My sister has had anal/rectal cancer...

    I have never been tested, but I take this as a lesson to stay vigilant, both for me AND my adult daughter!

    You will hear others share about HNPCC...this is the genetic colon cancer. This usually is the most outstanding because it touches young people. I was 49 at diagnosis, so it may be my family is just 'unlucky'. I'm not going to do the tests, at least at this time.

    Hugs, Kathi
  • vchildbeloved
    vchildbeloved Member Posts: 133
    #3
    KathiM said:

    My grandfather died from colon cancer. My mom has had uterine cancer (another place common). I have had rectal cancer. My sister has had anal/rectal cancer...

    I have never been tested, but I take this as a lesson to stay vigilant, both for me AND my adult daughter!

    You will hear others share about HNPCC...this is the genetic colon cancer. This usually is the most outstanding because it touches young people. I was 49 at diagnosis, so it may be my family is just 'unlucky'. I'm not going to do the tests, at least at this time.

    Hugs, Kathi

    Thanks for your reponse. My father was 46 when he passed. My brother was 50 at diagnosis; my sister had ovarian at 46; I'm 51 and the list goes on. I called the genetics office yesterday to see what the process is. I want my children ranging from age 25 - 33 to know what might be a potential health risk for them and theirs.

    Valerie
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • spongebob
    spongebob Member Posts: 2,565 Member
    #5
    Hi, Valerie -

    Both my wife (USAKat) and I are Lynch Syndrome survivors (genetic colon cancer, also referred to as HNPCC) I have been NED since completing chemo in 2002. Katie has been cancer free since completing chemo last year. We each got the HNPCC gene from our moms. My mom has had 4 "episodes" of cancer - uterine, bladder, colon, and bladder again... Katie's mom has also had 4 "episodes" of cancer - 2 colon, 1 lung, and 1 mediastinum (definitely result of the lung cancer and there is some question if the lung cancer was CRC mets or a new primary cancer).

    I understand your concerns about your kids - I have two sons of my own and there is a 50/50 chance they have the HNPCC gene. I - along with my mom and her siblings, my sister, and all of the children of my mom's sibs that tested positive for the gene - was part of the National Cancer Institute's genetic testing research. I see a LOT more negatives to the genetic testing than positives. I strongly recommend you do NOT ask a question for your kids that they don't necessarily want to hear the answer to. I strongly recommend that you and they assume you each DO have the gene and do your surveillance accordingly - annual colonoscopys, endoscopys, urine cytology screening, annual liver panel test and CEA test. Know the symptoms of CRC and seek professional medical care if you/they exhibit one or more - do NOT rationalize it away as something else ("hemmerhoids"...)

    One key thing to always remember... just because someone has the gene,doesn't mean it will express itself. I have a 50-something uncle who has the gene and it's never expressed. Katie has a 72-year old uncle who also has the gene and it's never expressed itself.

    Ultimately, you'll do what's best for you - just want to give you some food for thought.

    Cheers

    - SpongeBob
  • vchildbeloved
    vchildbeloved Member Posts: 133
    #6
    spongebob said:

    Hi, Valerie -

    Both my wife (USAKat) and I are Lynch Syndrome survivors (genetic colon cancer, also referred to as HNPCC) I have been NED since completing chemo in 2002. Katie has been cancer free since completing chemo last year. We each got the HNPCC gene from our moms. My mom has had 4 "episodes" of cancer - uterine, bladder, colon, and bladder again... Katie's mom has also had 4 "episodes" of cancer - 2 colon, 1 lung, and 1 mediastinum (definitely result of the lung cancer and there is some question if the lung cancer was CRC mets or a new primary cancer).

    I understand your concerns about your kids - I have two sons of my own and there is a 50/50 chance they have the HNPCC gene. I - along with my mom and her siblings, my sister, and all of the children of my mom's sibs that tested positive for the gene - was part of the National Cancer Institute's genetic testing research. I see a LOT more negatives to the genetic testing than positives. I strongly recommend you do NOT ask a question for your kids that they don't necessarily want to hear the answer to. I strongly recommend that you and they assume you each DO have the gene and do your surveillance accordingly - annual colonoscopys, endoscopys, urine cytology screening, annual liver panel test and CEA test. Know the symptoms of CRC and seek professional medical care if you/they exhibit one or more - do NOT rationalize it away as something else ("hemmerhoids"...)

    One key thing to always remember... just because someone has the gene,doesn't mean it will express itself. I have a 50-something uncle who has the gene and it's never expressed. Katie has a 72-year old uncle who also has the gene and it's never expressed itself.

    Ultimately, you'll do what's best for you - just want to give you some food for thought.

    Cheers

    - SpongeBob

    Thank you so much for your advice. My doctors are the ones pushing us to receive this testing. I thought that it was a "necessity". My children are aware of the history of our family so I will let them make wise decisions for their health and well being. Great advice!!!
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #7
    I had genetic testing done so that my children would be watched more closely. I do not carry the gene and 2 of my children have been scoped already. The youngest hasnt yet. I know they will still be watched because of me, but I would not want them to go through what I have been through.
    Maureen
  • Madre
    Madre Member Posts: 123
    #8
    Hi Valerie,
    I just was diagnosed with stage 3 colon cancer at 42. I wasn't having symptoms, not that I knew, but hind site is 20/20. Routine physical prompted further testing. In any event, they think mine is hereditary even though no one in my family has ever been diagnosed with it. Ironically, my sister had a colonoscopy the day before me and they found 7 polyps (1/2 cancerous). My dr is doing the genetic testing and just because you know the information doesn't mean it is a death sentence. Had I never been diagnosed, we would never know. I guess it is personal preferrence. Try to weigh the options of what good comes from knowing and what bad comes from not knowing. Is having a dr report going to change the way you and your family seek medical advice? I come from a family that "never goes" to the doctor, so we tend to "ignore" warning signs until it is too late. I wasn't at risk yet here I am. I feel if it helps 1 member of my family (cousins, aunts and uncles included) it's worth knowing about. Be comfortable with whatever decision you make. Good luck to you! :)
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #9
    Having the test done is a private decision. My husband had the test done. It came back negative. With his family history and our 29 yr old son already having polpys that were precancerous, our doctor feels there is a family gene issue. Positive or negative, we will continue testing and watching. Husband is stage 4 and son just completed his third colonoscopy. Each time he has had 3-5 polyps removed. It is important to remain on guard regardless of the outcome of gene testing. Doc said he feels that my husband has a bad gene, just not one they have identified as being connected to colon cancer.

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