I was diagnosed with Lynch Syndrome in the summer of 2016. My story begins in my early childhood when my mother was diagnosed with lung cancer at the age of 35. Unfortunately, she died only two months after diagnoses leaving behind two young daughters. This left our family in complete shock, considering her age. Fast forward many years and her only sister (my Aunt) was diagnosed with uterine cancer…and considering her age and the type of cancer, her doctor recommended genetic screening. This revealed she had Lynch Syndrome. Her daughter was also diagnosed. Then started the phone calls…desperately urging my sister and I to get tested.
My sister and I both saw a genetic counselor and considering how Lynch can be passed on to your children roughly 50 percent of the time, it should not have been a surprise when she was negative and I was positive for the mutation. I listened on the phone as the genetic counselor told me that unfortunately I have the mutation, my likelihood of cancer is extremely high if I don’t stay vigilant, that I would need to remove my ovaries, my uterus, and worst of all…that my three-year-old son could have this mutation as well. I felt as though the air had been taken from my lungs and the knot in my throat prevented me from being able to speak.
But, the Lynch diagnosis of the mutation MSH6 finally gave our family some answers to the string of cancers that had haunted our family. My great grandmother was diagnosed with ovarian cancer age 40 and later colon, my mother’s early death, and now my Aunt’s cancer diagnosis. I was referred to one of the best cancer centers, MD Anderson. I walked the halls where my mother had received treatment many years ago. My first colon screening revealed a polyp-likely to become cancer. I thought about how I would have not had this screening for another 20 years, how it could have become cancer growing and spreading throughout my body, how I would not have had this screening if I hadn’t been diagnosed with Lynch Syndrome, how knowledge truly is power. Now I receive ultrasounds, biopsies, upper and lower endoscopies, skin exams, blood draws, and in a few years I’ll have surgery to remove my ovaries and uterus. This has all just become part of my life, part of the way the counselor told me that I need to stay vigilant. My cousin and Aunt who were also diagnosed are my support group, we all check in on each other to make sure we are staying on top of our screenings.
I am extremely grateful to be a previvior (a term I never knew before)! I keep busy by trying to raise awareness for Lynch Syndrome and connect with people who are in similar situations. I try remind myself when I feel as though my body is a ticking time bomb, that knowledge is truly power.
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