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Living Scan to Scan with Lynch Syndrome

All of this fuss over frequent cancer prevention begs the question: To what end will I try to fight cancer and for how long?
PUBLISHED February 26, 2019

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.”

I frequently remind myself that cancer is the abnormal growth of cells and is inherent to our DNA. It is essentially the price we may pay for being a multicellular organism; mutations, good, bad and neutral are essential to the process of evolution. I believe we are animals having a human experience and it is our humanity which makes this basic evolutionary process difficult to digest, comprehend and accept. 

Thanks to certified genetic counseling and genetic testing, I am aware of one of the deleterious, or potentially harmful, genetic mutations I have — Lynch syndrome. With that said, it’s almost that time for my annual Lynch syndrome screenings. I frequent a leading medical facility which has doctors well-versed in Lynch syndrome screening protocols and have all of my screenings and tests done within a matter of a few days. I wish everyone with Lynch could receive stellar care, the time and wherewithal to get similar care, but they don’t, and this is a problem. Scanxiety was an issue for me in the past, but with the passage of time and the succession of clear scans, it does not seem to be much of an issue any longer.

Scanxiety used to rear its ugly head about a month before my scans. It would manifest itself in the form of anxiety, insomnia, nausea, lethargy and depression. Survivor guilt would also plague me, and I would spend a lot of time of thinking of my brother Jimmy. My mind would go into overdrive, thinking of every possible horrible situation regarding Lynch syndrome related cancers. For years I found myself living scan-to-scan, and during scanxiety time, I would assume the absolute worst whilst hoping for the best. It’s not all that surprising considering my family medical history– one brother is dead, the other lost his colon at age 48. 

I have the MLH1 mutation and the following tests and consults were recommended for my particular mutation, my family medical history and my personal needs: blood tests, urine test, mammogram, bone density scan, endoscopic ultrasound, colonoscopy, upper endoscopy, gynecological consult, an urogynecological consult and a dermatological consult, along with the occasional CT scan. I’ve been having colonoscopies for over 20 years. My brother’s early death was the impetus for those colonoscopies — I had no idea at the time I had Lynch syndrome. Usually it is recommended for those with Lynch to have a chromoendoscopy to detect the flat polyps for which we are at risk. My scope a couple of years ago revealed a small, flat colon polyp, which was removed and biopsied – thankfully it was detected, and it was benign.

All of this fuss over frequent cancer prevention begs the question: To what end will I try to fight cancer and for how long? Some would say not all cancers lead to a death sentence and there are numerous variables one must consider. But honestly, I’m not interested in removing any other body parts — I’ve already removed some prophylactically and that has not gone too well. From what I’ve heard and seen about it, chemo seems to be everything but appealing; the potential long-term side effects leave very little to be desired. Immunotherapy has shown some promise for those with Lynch but it’s not always sans side effects and is currently costly. I will probably continue with my colonoscopies for my minor son at least for another year, since they seem to be pretty effective at removing polyps. Yet, annual screening is a double-edged sword — am I increasing my chances of developing cancer even further through exposing myself to radiation specifically from the mammograms, bone-density tests, x-rays and the CT scans I receive? 

Having to go through annual screening every year is getting old, exhausting and expensive. I can understand why some people just do not want to undergo genetic testing. Knowing you have a genetic mutation can be too much for some to bear. And for women who can take preventative strikes to prevent cancer, it is certainly not cheap — physically, emotionally or financially. 

Having to meet an annual $5,000 insurance deductible, on top of having to pay for health insurance every year, adds up. Not to mention the additional visits to doctors for treatment and meds which deal with the other issues I have developed as a result of my prophylactic oophorectomy. Preventing early onset female-specific cancers with prophylactic surgeries has been nothing but an unlovely domino effect of unwanted, unexpected health issues for me every day. 

Honestly, I have difficulty discerning what are age health issues vs. those due to accelerated aging fueled by the prophylactic surgery. Those little ovaries are important for so many other body parts and functions—don’t let anyone tell you otherwise. Having my ovaries removed at a young age has not been a wonderful experience for me. I unknowingly traded quality of life for some false reassurance. In the meantime, I’m trying to take advantage of my time here, living my best life, but I am pretty certain the day will come when I will walk away from it all and allow nature to take its course. After all I have seen and been through, quality of life matters more to me than its quantity. 
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