Living with Lynch Syndrome
By John Nelson
My name is Johnny Nelson. I am of the Dine’ (Navajo Tribe) from New Mexico and now live in Las Vegas, Nevada. On December 29, 2011, I was waking up from the anesthesia of a colonoscopy. A procedure I’ve had numerous times since cancer ran strongly in my family. I had colonoscopies since my late thirties following the passing of my younger sister and brother from colon and stomach cancer. They were both in their early thirties. Doctors at that time suspected a genetic condition in our family but didn’t know what it was and didn’t give a name to the condition. My mother had colon cancer twice and breast cancer at different times and today remains a survivor. I began a routine colonoscopy every 2 to 3 years on my own. I wasn’t comfortable with the 8-10 year recommendation of my doctor. Once awake, the curtain around my bed opened to a group of doctors looking at me. This was surprise to me since I was expecting the usual “schedule a follow up with your doctor in a few weeks.” My gastroenterologist told me he found a large mass on my right side, stage 3 colon cancer. He recommended immediate removal and introduced the surgical doctors and staff that stood with him. I elected to proceed with the surgery.
Recovery did not go well, I developed a serious blood infection and began an aggressive treatment. Over the weeks that followed I became very weak and lost 50 pounds. A couple of months later my gastroenterologist recommended I see an oncologist who was knowledgeable of Lynch syndrome. After listening to my family history he recommended genetic testing. The test showed I had Lynch syndrome just as he suspected. This was the first time I heard of Lynch syndrome. I felt somewhat relieved to finally put a name to the condition that plagued my family. If only we had known about Lynch syndrome and the importance of screening years ago! Perhaps my siblings had a chance to a full life.
I began six months of chemotherapy after the surgery and became very weak. I barely had strength to walk to the bathroom. After completing chemo, I was determined to build up my physical condition. The short steps to the front door and back to bed were exhausting but a start. Weeks later I was able to walk around the block, exhausted but happy to be on a healthy journey. My determination turned into running my first half marathon. I returned to the gym and lifted weights and watched my diet.
I am now a colon cancer and Lynch syndrome advocate. My experience has lead me to be a board member of two awesome nonprofit organizations: Lynch Syndrome International and American Indian Cancer Foundation. I hope to spread colon cancer and Lynch syndrome awareness to Native Americans. I feel there is a great need to educate doctors on the Indian reservations to look and listen for signs of heredity cancer in families. I also feel there is a need for genetic counselors on the reservations. Early screening and genetic testing is critical to some families.