In two weeks, I will be at Mayo Clinic undergoing my annual screening for the various Lynch syndrome-related cancers for which I am at risk.
Georgia Hurst is a patient advocate for those with Lynch syndrome. She has the MLH1 mutation and fortunately has never had any cancer. She is the co-creator of #GenCSM (Genetic Cancer Social Media) on Twitter, and her advocacy work has afforded her opportunities to write for medical journals, various websites and genetic testing companies, as well as collaborate as a stakeholder for the National Academy of Sciences: Genomics and Population Health Collaborative. Her loves include: her son, her dog, books, photography, long walks in the woods, and seeking out fungi after the rain. Her motto is: "There is enough misery in the world – there’s no need to contribute to it.”
In two weeks, I will be at Mayo Clinic in Rochester, Minn., undergoing my annual screening for the various Lynch syndrome-related cancers for which I am at risk. This will be my fourth trip to Mayo since I tested positive for Lynch syndrome and I am currently suffering from "scanxiety," or rather, anxiety from upcoming scans. I wish I could say the scanxiety lessens with time but it does not.
My scanxiety tends to plague me in the forms of anxiety and insomnia. When I do manage to sleep, I suffer from nightmares. Most of these nightmares are about situations beyond my control and are catastrophic in nature. Both of my brothers have been afflicted with colon cancer, one at age 36 and the other at 48. The first brother died as a result, the second had his colon removed. Neither one of them knew of Lynch syndrome when their cancers developed. My second brother’s colon cancer is what prompted him to be genetically tested for Lynch and that is when I sought out genetic counseling, followed by genetic testing.
I do not consider myself lucky to know I have Lynch syndrome – I considered myself warned. Those who are ‘lucky’ are the ones who do not have Lynch syndrome. However there is no need for me to sit passively to wait for cancer to come; I have taken preemptive strikes by having a prophylactic hysterectomy and oophorectomy, I eat a plant-based diet, exercise, and try to live a healthy lifestyle. Most importantly, I get screened annually.
At times, it can be difficult to remain optimistic when your siblings have died from Lynch syndrome-related cancers. Now is one of those times — this is the time of year when I play the hypothetical "what if I have cancer?" game in my head. While I am not afraid of dying, I am afraid of the physical and emotional suffering that cancer brings. I have committed myself over the past 2 1/2 years to reading a lot about various cancers and the plethora of treatments. I have spent countless hours talking to people who are dealing with various cancers and the charming side effects of chemotherapy and radiation; many complain their quality of life has declined significantly. Additionally, some of the people who undergo some of these treatments do not necessarily succumb to the cancers themselves but rather from the complications, which arise from the treatments.
My prophylactic hysterectomy and oophorectomy was a pretty hellacious experience for me and the thought of having any other body parts removed gives me tremendous pause. In turn, I make a concerted effort to be positive and do what I can to maintain my health but in the end, especially during 'scanxiety' time, it feels like a crapshoot and all rational thought goes out the window. Right now I feel as though it’s a matter of when, not if.
I must remind myself of the positives in regards to my particular situation. For one, I will be trekking to Mayo where the doctors know
about Lynch syndrome and know what screenings need to be done. This is priceless and gives me some solace. I will have all of my tests and scans done within a matter of a few days. I know that the meticulous annual screening, which they provide, will most likely catch something early – therefore minimizing surgical procedures and other possible treatments.
I know I’m not the only person out there with Lynch syndrome who develops scanxiety; many of us deem ourselves 'sick' until our annual screening suggests otherwise. Some of us cannot help but feel this way, especially if we have been witness to close family members dying from Lynch syndrome-related cancers.
In the meantime, I’m trying to keep myself busy with my advocacy work. I will be hosting a Tweet chat called #hcchat this Wednesday, April 29, at 9 p.m., with Amy Byer Shainman (@BRCAresponder
) and Ellen Matloff (@MyGeneCounsel
). We will be discussing Sex after Hysterectomy and Oophorectomy
with Dr. Sharon Bober from the Dana-Farber Cancer Institute.
I encourage both men and women to participate in this discussion. If you have been diagnosed with Lynch syndrome or another hereditary cancer syndrome which warrants the removal of female reproductive organs, this discussion could be very enlightening for you, especially if the women in your life are considering or have had these surgeries. This chat will be very insightful and Dr. Bober will be available to answer your questions. Please join us.
Georgia Hurst, MA