LYNCH SYNDROME. Two words that have changed my world forever.
Tomorrow is Lynch Syndrome Hereditary Cancer Public Awareness Day. It is believed that nearly 600,000 Americans have Lynch Syndrome, YET only 5% have been diagnosed.
Until recently I had never heard of it, so knowing how few people have been diagnosed doesn’t really surprise me. I knew my family had a strong history of cancer and it seemed like my grandma’s side of the family was a giant cancer magnet. Now at least I understand why.
So what is Lynch syndrome? Lynch syndrome, also known as hereditary non-polyposis colorectal cancer (HNPCC) is caused by a genetic mutation. It is passed down from generation to generation. People with Lynch syndrome have up to an 85% chance of contracting colorectal cancer by age 70 as well as an up to 70% chance of contracting endometrial cancer. Carriers are also at a much higher than average risk of contracting various cancers including ovarian cancer, cancer of the gastrointestinal organs, cancers of the kidney/urinary tract, brain, pancreas, and breast.
A few years ago, my beloved Aunt Nanci passed away from colon cancer. It was not her first battle with cancer (she had ovarian and breast cancer as well) but sadly it was her last. At my cousin’s urging, she agreed to participate in a genetic research study (due to her personal cancer history as well as the strong cancer history in her family. At the time she was losing her battle with colon cancer, other cancer-surviving relatives (including my dad) were asked to participate in the study but they all declined for various personal reasons – most said they just “didn’t want to know.” Tests completed AFTER she died showed that she did in fact have a genetic mutation called Lynch syndrome.
Two months ago my father was diagnosed with cancer for the 4th time. Although NONE of his cancers were the same as his sister, his mother also had many cancers, and ALL of their cancers could be linked to the family of Lynch syndrome cancers. Since he also had aunts, an uncle, and first cousins with Lynch syndrome related cancers, and since his sister’s colon cancer had tested positive for the genetic mutation, his doctor strongly recommended that he get tested as well. I asked him to do it for me, my brother and our kids and he finally agreed. Last month his results came back positive for the mutation.
His positive result meant that I now had a 50/50 chance of inheriting this mutation. I took the test in early March and just received my results – POSITIVE.
So, what does that mean for me? At the moment I am pretty healthy. I feel fine for 44 and I can’t imagine getting cancer. Yet, according to the genetics counselor I am a cancer PREVIVOR.
What is a previvor, you ask? It’s someone like me. Someone who hasn’t yet had cancer but who is so highly predisposed that it’s more likely than not I will get it. It’s someone who is taking steps to minimize the risk of cancer, someone who is taking her health into her own hands. It’s being proactive. It’s not surviving, but previving.
I’m not going to pretend that I’m not overwhelmed, frustrated, and yes, a little scared. Heck, how could I not be after seeing those odds! Still, I will do what I need to do. I will endure yearly screenings I could never have imagined someone my age volunteering to do. I will undergo preventive surgery next month to significantly decrease my chances of getting a few of the cancers. I will change my eating habits and try to get fit. I will do whatever is necessary so that the odds are in my favor.
I read somewhere that “a bend in the road is not the end of the road UNLESS you fail to make the turn.” I intend on staying on this road a very long time.
I am so thankful for all my friends and family who have been so incredibly supportive since I got the news. I’m also thankful for my new “team” of doctors, several who are just now learning about Lynch syndrome themselves, and are working together to give me the best chances for a long life. And finally I am thankful for my incredible husband Mark and my two sons who remind me every day why this life’s worth fighting for.
Tomorrow I will be wearing my jeans as a reminder for anyone who might be at risk to screen their genes. It is my hope that the other 95% of Lynch Syndrome carriers will eventually get tested so that they can also “stack the deck” against cancer!
I hope you will join me and wear your jeans tomorrow too!