It was just another fall evening as me and the family were just finishing up dinner after a busy evening of football practice, dance class, and homework when I received a call from my doctor. He had recently sent me for a genetic risk assessment to see if I carried any of the BRCA gene mutations due to the high amount of breast cancers that ran in my family. My mom just had the same test about a month ago and hers came back clean, but my doctor wanted to test me as well to cover my dad's side of the family. When I saw him calling, I figured he was calling me to tell me my test results came back fine, and I could go on with my yearly checks as normal. I answered the phone and he immediately said, "Well I am sure glad we did this test because yours came back showing positive for Lynch Syndrome". I was completely thrown off guard as I never heard of Lynch Syndrome. I asked what is Lynch and how is it going to affect me and my life moving forward? He proceeded to tell me that it's a genetic condition that increases my risk of many types of cancer and at a young age. Some of the cancers included colon, stomach, intestinal, liver, endometrial, ovarian, brain, skin etc. (the list went on). He told me to come by his office in the morning to pick up my risk assessment test which listed out my cancer risks as well as the percentages so that we could make a plan moving forward. I hung up the phone trying to hold back the tears from my family. I didn't want them to know that their mom has a genetic condition that will possibly cause cancer someday. My husband looked at me as if he knew something was wrong, but he waited until the kids were not around to ask. When I told him the news, I don't think he understood the severity of the syndrome because quite honestly, I wasn't even aware of what it all encompassed. I decided to confide in my friend, Mrs. Google (of course she is a woman, she knows it all!) to do my research. What a mistake that was as it only scared me even more. I learned that Lynch syndrome is an inherited mutation in genes that affect DNA mismatch repair, basically it meant that my body didn't go through the regular process that fixes mistakes made when DNA is copied. These Lynch Syndrome genes of MLH1, MSH2, MSH6, PMS2, and EPCAM are to help protect you from getting certain cancers, but mutations in these genes with people who have Lynch prevent them from working properly. So, in short, instead of my MSH6 gene working properly and repairing any defective genes on a regular basis, it accumulates the cells, and in return causing the mutation - CANCER.
I spent the next week of my life consumed by learning more about this genetic syndrome. It was all I could think about, talk about, and cry about. I kept asking myself, why me? As far as I aware I was the only person to have this genetic disease, but if it is genetic that only means I was the first one to officially be diagnosed. Looking back on my family history my paternal grandfather was diagnosed with colon cancer at 54 and he later passed at 71. My family told me that he passed from colon cancer as he couldn't fight it and it finally spread through his body. After sitting down and talking to my parents more in depth they told me he had colon cancer and fought that, was later diagnosed with liver cancer and fought that, but then diagnosed with brain cancer which eventually took his life at the young age of 71. The cancer didn't spread like everyone had said, instead they were all separate cancers, all Lynch related cancers! I knew that this had to be passed down from my grandfather to my father and then to me. My next step was to get my dad tested to confirm my proclamation. My two brothers also needed to schedule their genetic tests ASAP because preventative care would be needed immediately if theirs came back positive. Months later the results came in: Dad - Positive for Lynch, Brothers - Negative! My first thought was," I knew it! I knew this came from my dad's side". My second thought was, "Why me, why am I the one out of my two siblings to get this horrendous syndrome"? The odds of a Lynch positive parent passing it to their child is 50%. Our family has three kids in it, me and my two older brothers and I am the lucky one to inherit it. I felt awful thinking this way, but I did. I was just feeling sorry for myself, but the more I thought about it, the more I was happy to be the one who took the Lynch bullet. I wouldn't wish this upon my worst enemy never mind my two brothers. I would hate having to watch them struggle with the constant worry every day, going through all the preventive care/treatments and at worst case be diagnosed with cancer. I'd rather be the one to take it on and see them live their lives happy, healthy and cancer free.
I am currently under the best care for my Lynch here in Boston, Ma at Dana Farber Cancer Institute. I have my very own Genetic Cancer Doctor who specializes in Lynch Syndrome and cares for those who have Lynch. I have undergone several preventative surgeries which all came with very hard decisions (future blog post!), have yearly procedures specifically to check on areas of potential cancer risk, and have immensely changed my lifestyle (again future blog post!) in hopes to keep my Lynch at bay.
My life has forever changed since being diagnosed with Lynch. There isn't a day, an hour or minute that goes by that I do not think about Lynch. Some days it consumes me completely, and it is all I can think about. With every ache and pain, I wonder, " Is this cancer?". I constantly look at my two children and think how much they need me to be here and healthy. I don't want them to be that child who says, cancer took my mom away from me. My heart hurts a lot of days, but I had to change my mindset and think about how fortunate I am to have taken that genetic test. I did go through a period of time wondering, "Would it have been better not knowing?" If I didn't choose to take that test, I would have continued my life as I had been the last 40 years, carefree and without this dark cloud hanging over my head daily. Then I say, "Wake up, Keri." It's time to face reality!' It is time to take Lynch by the horns and say, "LETS GO!" "TRY ME, LYNCH... GO AHEAD TRY ME!" As difficult as it was finding out I have Lynch I am happy I did. It's all part of God's plan and he picked me because he knows I'm a fighter and I will fight until the very last moment! If I didn't take that test, I wouldn't be receiving the preventative care in order to catch something in the earliest stages possible. That little genetic test which I never thought about taking in the first place, very well may have saved my life and for that I will be forever grateful.
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