A year in the life of a Lynch syndrome previvor includes comprehensive screenings for cancer.
Three years ago, I received a call from a geneticist explaining that, unfortunately, my blood sample showed that I had Lynch syndrome. Those of us with Lynch syndrome have inherited genetic mutations that predispose us to cancers, including those affecting the colon, endometrium, ovaries, stomach, small intestine, hepato- biliary tract, upper urinary tract, brain and skin.
This news should not have been shocking to me, considering my family’s strong history of cancer. My mother died of lung cancer — which may have actually been the spread of a Lynch-related cancer that started somewhere else in her body — when I was a little girl, when she was just 35. Her grandmother had early-onset ovarian and colon cancer, and my mother’s only sister later received a diagnosis of uterine cancer. There was obviously a genetic link, but it was not discovered until after my aunt’s diagnosis.
Knowing you have a genetic mutation that can cause cancer can at first be quite shocking. But that reaction wore off after the first few weeks, and I realized I needed to get screened for cancer immediately. Had I known when I was younger that I had Lynch syndrome, I would have received my first cancer screenings 10 years earlier. Instead, I had my first colon screening at the age of 32, and they found a precancerous polyp, which was promptly removed.
Now, every fall, as I set out my Halloween decorations, I mentally prepare myself for a few weeks of screenings to make sure I stay ahead of any possible disease. First, I give blood and urine samples to test for ovarian and bladder cancer markers. Then I have an ultrasound to check my ovaries and uterus for signs of cancer, and this is always followed by an exam and consultation with my gynecologic oncologist. She and I have discussed at great length the best time for me to have a complete preventive hysterectomy and oophorectomy — probably between ages 38 and 40. There are many factors to think about when considering early surgical menopause, such as bone loss and heart health. She also quizzes me about any potential signs of ovarian or uterine cancer. I had a baseline mammogram last year, which will be repeated in five years, and I undergo an annual full- body skin exam.
After those appointments, I fast for a day or two to prepare for my annual colonoscopy and uterine biopsy; every other year, an upper endoscopy is added. The colonoscopy and endoscopy check for any further polyps that could cause cancer in my digestive tract, and the uterine tissue is examined for any abnormal cell changes. Dr. Patrick Lynch (son of Dr. Henry Lynch, who discovered my gene mutation), is my gastroenterologist at The University of Texas MD Anderson Cancer Center in Houston.
Occasionally, I get a call to discuss abnormal results. Last year, an elevated level of the protein cancer antigen (CA) 125 was detected in my blood. The CA 125 test is used to look for early signs of ovarian cancer in people at very high risk. My gynecologic oncologist called to notify me, and the first thing she said was, “Do not panic.” A previous biopsy also had shown inflammation in my uterus, and she thought the two were connected. I would take antibiotics and repeat the CA 125 test in two weeks. A day after that second test, I received another call from my doctor: “Tara, do not panic, but your levels are even higher this time.” Because my ultra- sound had looked normal, she advised removal of my intrauterine device, which she explained can cause inflammation. I had it removed and, two weeks later, gave more blood for another CA 125 test. A day later she called again — this time, my levels were fine.
After that scare, I came to the realization that this process is just my new normal. I will forever be invasively screened for cancer, and occasion- ally some results will be abnormal. After weeks of anxiety about this test, I was mentally drained. Therefore, when I went in for my round of screenings last fall, I told myself I would not panic if there was anything abnormal.
Many people are not fond of mental health medications, but I was written a prescription for a drug in case of panic attacks, which I take only when needed. Just knowing I have it provides a security blanket. There should be no shame in taking care of yourself mentally.
I do everyday things to take care of myself, too. My friends joke that I am the sunscreen queen. I try to eat a balanced diet with lots of greens. I work and have a 4-year-old, so I am busy, but I try to maintain an active lifestyle. I am participating in a clinical trial for people with Lynch syndrome, through which I’ve been issued a Fitbit, and my exercise is monitored.
I also find that helping others makes it easier for me to cope, and raising awareness about Lynch syndrome has become my passion. I am now on the board of directors for AliveAndKickn, a Lynch syndrome patient advocacy group. I need that distraction from my worry that I could have passed my gene mutation to my son — the absolute worst part about having Lynch syndrome. In addition to staying busy, I find it helps to think of all the medical advancements that will have happened by the time he is 18 and tested for the condition.
The other reason I raise awareness is because a whopping 95% of people with this gene mutation are not aware they have it. I consider myself one of the lucky ones because I do know.
Tara Kirk is the marketing director for ACT Pipe and Supply, where she has been employed for 10 years. Along with her son, Rowan, 4, and her husband, Ben, she resides in Houston, where she was born and raised. In her spare time, she loves to paint, read, cook and volunteer her time to efforts aimed at increasing awareness about Lynch syndrome, including serving as a board member for AliveAndKickn.