HNPCC

usakat
usakat Member Posts: 610 Member
edited March 2014 in Colorectal Cancer #1
Hello All,
This week I received my results to genetic testing and the results confirmed that my cancer is associated with HNPCC (Hereditary Non-Polyposis Colon Cancer). I have a few questions for people who have gone through this process.

What is the best way to tell family members and when is it appropriate?

My brother is stubborn and doesn't want to get tested. How can I encourage him to get tested, if not for his sake, for his kids?

How do I keep family members from freaking out? I don't want the dooms-day types to get psyched out, especially if they are not high risk.

Thoughts on prophylactic surgery / chemo / screening?

Once again I appreciate your thoughts...THANKS!
Katie

Comments

  • houseofclay
    houseofclay Member Posts: 63
    #2
    My husband was tested for HNPCC and while the test was negative, his family history is suspicious enough that we were encouraged to keep up with advances in HNPCC testing because he still might have the mutation. That being said, here are a couple of suggestions to your questions.

    Any siblings should be informed of the test results and encouraged to inform their doctors of this positive test. I would hope common sense would prevail and they will get screened. But you cannot control that, so try not to worry. Two of my husband's siblings said if he was positive, they would not act on the information. Go figure.

    Try to explain what the positive result means and ask everyone to listen to your words and not assume the worst. Now that you know your cancer was HNPCC-related, you can formulate a survellience plan to catch any future problems early.

    As far as surgery, I would talk with your gastroenterologist as well as your oncologist about this. It is a huge decision and one that you need to gather lots of information before deciding. A second opinion from a doctor who sees lots of HNPCC cases would also be helpful.

    I hope that helps a bit. Sorry about the results but I do think knowledge is power especially in a case such as yours.
  • terril
    terril Member Posts: 296
    #3
    Hi Katie!!!
    Once a family member has been diagnosed with cancer, it becomes a family issue to all. I believe you must tell your family members. This is so important because of their lives. I have a brother who has not been tested ; fear is the issue. I wish he would get tested because it would just kill me if he had this horrible disease. My dad and other brother were tested, and they are fine. Be honest with how you present the information to your family members. Be positive, too. My prayers and thoughts to you and your family.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
    Katie,
    I have learned that you cannot MAKE people do things they do not want to. The fact that you shared with them about your colon cancer (you did, right????) is about as much a you can do. This is still the 'cancer no one talks about'. BUT it IS getting much more press...so...in 5 years hopefully it will be as much 'out there' as breast cancer talk....
    My understanding of HNPCC is that it doesn't necessarily mean that all of your family will test positive. My mom's dad died from CRC, and when I asked about the testing for my mom, I was told she may or may not be positive.
    I have had rectal cancer now, but not the kind that usually is hereditary...
    I suggest that informing them that guidelines for colonoscopy for them is 10 years younger than when you were diagnosed....and if they are 50 or older....a baseline scopy is now recommended.
    You cannot live other people's lives for them, even your family members....

    Hugs, Kathi
  • spongebob
    spongebob Member Posts: 2,565 Member
    #5
    Katie -

    I also have HNPCC. I participated in a NIH/National Cancer Institute genetic study which allowed my sister, my mom, all of her brothers and sisters and the children of those brothers and sisters who tested positive for the gene to be geneticaly tested as well. I have seen both the good side of this as well as the underbelly of the ebast. I would be very happy to talk to you about the pros and cons of discussing it with family members - there are some definite cons that you should consider. Drop me a note and we can talk if you'd like.

    - SpongeBob
  • jerseysue
    jerseysue Member Posts: 624 Member
    #6
    I was tested for HNPCC and my family were waiting for the results if not for them then for their kids. I got the all clear on this test. You may want to explain that to your brother if he doesn't care about his health he may want to get tested for his kids sake (if he has kids).
  • usakat
    usakat Member Posts: 610 Member
    #7
    jerseysue said:

    I was tested for HNPCC and my family were waiting for the results if not for them then for their kids. I got the all clear on this test. You may want to explain that to your brother if he doesn't care about his health he may want to get tested for his kids sake (if he has kids).

    Thanks for the responses everyone.

    My brother is not convinced he should get tested, but once I get my sister-in-law on board it's all over for my brother. At the risk of being nagged by three women, he will have no choice but to get tested. I think in the end he will appreciate knowing, he just always has to buck the system a bit. Seriously, I will have to respect his wishes if he does choose not to test.

    My biggest concern with my family at large is that once the news is out about my HNPCC it will run through the family grapevine quickly, and may go the way of all good gossip and spin out of control. I think my mom has already leaked word on the street so I better start getting in touch with my cousins before they waste money on unnecessary tests. The only affected people at this point are my parents and my brothers (good thing I'm back in touch with my dad).

    In terms of advance surgeries I was more interested in the...uh...female stuff, but after a good sleepless night I think I will keep what I have and watch it like a hawk.

    I've been trying to change some long held ideas about cancer since my mom has battled it four times, but also since my HNPCC diagnosis. Primarily I must look at cancer as more of a chronic condition, like rheumatoid arthritis, instead of the killer it once was. Diagnostics and treatments are getting better all the time and with diligence I expect to live a long life, in spite of HNPCC. I hope I can reasonably express this to my family.

    Thanks again,
    Katie

    (SpongeBob - thanks, I'll drop you a note later)

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