Discussing Lynch Syndrome With Your Kids

How Dave Dubin of AliveandKickn Discussed Lynch Syndrome with his Kids

aliveandkicknLynch syndrome, also known as hereditary non-polyposis colorectal cancer (HNPCC), is a type of inherited cancer of the digestive tract.

Lynch syndrome is often a precursor to colon cancer. Those who are diagnosed with Lynch syndrome are encouraged to be screened earlier and more regularly than the rest of the population.

Dave Dubin was diagnosed with Lynch syndrome in 1997. Since it is highly heritable, he had to face talking to his young children.

Dave has been there and wants you to know that it’s very important that you talk to your children about Lynch syndrome and have them tested as early as possible.

In this video, Dave talks about how he talked to his children about Lynch syndrome and gives tips on how you can too.

Dave Dubin:  So, people ask me how I deal with the Lynch syndrome, and as it pertains to the kids.  Well, obviously I am a big proponent of a genetic testing because I do think the genetic component is a significantly larger piece than it’s made ought to be, but also once you know the genetic component and you know you are up against, you know how to fight it, you know how to screen for it, you know how to get earlier detection, so rule of thumb in cancer is that you as a child get screened 10 years younger than the parents, so again going back to 1997 when I was 29, so now my kids are aging and of course, it’s strange to think about it that they have only known me as a survivor and you know in both senses of the word, but that’s the reality, so my 18-year-old who is our oldest. 

His job is this year was to get into colleges which he did.  We are going to proud, but also to get his genetic testing done.  It was never questioned, but we did not.  We wanted to wait until he was 18 and sought to my genetic oncologist, so he was tested and sure enough he does have Lynch, you know the reason my wife used to be mad at me and he had his first colonoscopy at age 18 just literally a few months ago and thankfully it was positive, but this is the same timeframe positive in that it was clear, so the 14-year-old who have the same thing when assuming the timeframe doesn’t change when he turns 18 and then of course the 10-year-old when he turns 18 again all assuming the timeframe doesn’t change from my benchmark of age 29.

But it is interesting that I know a lot of parents who are grappling with the concept of talking with their kids about Lynch and also how to go about getting them screened because they want their kids to get screened, but do they want to wait until after their 18 when there is a chance that the kids don’t want to it or do they get it done before their age 18 when theoretically they can make the decision because the kids are minors, so interesting thing is that kind of one of the newest segments of my journey is becoming this person that people go to who have Lynch and now have kids that are getting old enough to get screened or should get screened either for the genetic component or even having colonoscopy because it’s obviously getting younger and younger and you now it’s stuff that you don’t think about.

David Dubin

David Dubin

David Dubin is a three time colon cancer survivor and founder of Alive and Kickn, a foundation for colon cancer and genetic colon cancer. The foundation uses soccer games as a method awareness and fundraising.

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