Sunday, August 5, 2012

Testing Minors for Lynch Syndrome

I know this might be somewhat controversial, but it is something I feel strongly about so I want to post it. With Lynch Syndrome being hereditary the option of testing minor children eventually comes up. It's a parent's fear, passing on a genetic condition to their child so it's definitely something hard to discuss or imagine. I think this is a big reason many people with Lynch don't test their children. Another big reason is because of the unknown factor of how the child will handle the news, if bad. It's a big decision.

People with Lynch are recommended to begin receiving screening 10 years earlier than the youngest age a relative was diagnosed with colon cancer (i.e. if your parent was diagnosed at age 31 then you should begin screening at age 21). For me, my youngest relative, a first cousin, was diagnosed in his late 20s and I began having symptoms at age 17. It has been recommended to me by my doctor that I should begin screening my children (if I had any) when they are 7 yrs old, 10 at the latest. Crazy! But it could save their life. I know of a 10 yr old with Lynch that was diagnosed with colon cancer. That's crazy too.

Now, why would I begin getting my kid a colonoscopy at age 7 without even knowing if he/she has Lynch?? Their is a 50/50 chance, so they might not get it. Then also, why would I wait to screen them until they are in their 20s if they could have Lynch? To me, it makes the most sense to test them so that we can do what's best for them... either get them screened or save them from having unnecessary scopes.

I was a minor when I began having symptoms and it was because of my age that it took so many years for me to get diagnosed. Had I known I had Lynch then it might not have taken so long for me to get that diagnosis. My family didn't know about Lynch, which is why I wasn't tested earlier... but had my family known this gene ran in our family and knew it was possible I had it and yet didn't test me for it, then I have to admit, I would have been upset with my family for not testing me.

Kids are diagnosed with medical conditions all the time that they have to learn to overcome and deal with... childhood cancer, heart conditions, birth defects, learning disabilities... how is Lynch any different? My nephew will grow up knowing he has Tetrology of Fallot, a congenital heart defect. He will have procedures and heart surgeries and he will have to sit out when his friends play sports... how he handles it will largely depend on how we his family interact with him and how he is raised. I feel it is the same with kids and Lynch. How kids view the diagnosis will largely depend on how their parents view it. If the parent sees it as a death sentence then so will the child. If the parent sees it as life saving because cancer, if it ever happens, can be caught early, then the child will most likely see it that way too. Sure, it will be frustrating at times. What kid or teenager wants a colonoscopy? But again, it could save their life! I think at the end of the day anyone would rather catch cancer at stage 1 or even pre-cancerous instead of stage 4... and that is how a genetic test can help.

I'll never judge someone for not testing their children, but I feel the way I do about testing minors because I was a minor when I got cancer and I wish I had had the opportunity to be tested. I hope that as Lynch becomes more well known that there will be more and more resources for parents as well as support for children. We need an annual Lynch Syndrome conference or something!

Get tested! Get Screened! Prevent cancer!
"Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting..... 'WHAT A RIDE!'"