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CDKN2A and IVF

Forums General Melanoma Community CDKN2A and IVF

  • Post
    ksbadger13
    Participant

      Hi all – 

      I went through genetic testing last year and am positive for the mutation in the CDKN2A gene which significantly increases risk for both melanoma and pancreatic cancer. My genetics counselor suggested my husband and I look into IVF with PGD (preimplantation genetic diagnosis) if we decide to have our own kids down the line, to avoid passing my gene on to them. Since there's a 50/50 chance that I would, and having lived through and with the turmoil that is melanoma, now coupled with the nagging concern about pancreatic cancer, this method does sound appealing, though scary and expensive. I'm wondering if anyone on here has tested positive for the gene, and if you've had your own kids, considered IVF, or decided not to have kids. This is such a rare mutation, with not a lot of searchable information or support, so any input would be appreciated! 

      Thank you for your time!
      Kellie 

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        Janner
        Participant

          I have the mutation but don't have kids. I was unable to have kids so the info was only useful for me. I also am adopted so my results didn't affect anyone else I knew.  I recently found my birth family and mother and half sister have both had melanoma.  So I'm back researching more about the defect, talking to a pancreatic doc next month just to pass on info to my extended family.  I'm not sure they want to know but I will offer the info.  The one thing that I'll say is knowledge is power. Just knowing you have a predisposition will likely make certain anything is caught early.  Melanoma still is a much higher risk than pancreatic cancer.  I've never heard anyone here pose a similar question to yours and I have known about my defect for over 10 years and been on this site longer than that. So I'm not sure you will get anyone who has been in your shoes.  Just my two cents, even knowing what I've known about this mutation, I would probably still have had kids even if they had the mutation.  The idea of IVF is a new twist and I'm not sure where I'd go with that.  Good luck!

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