Overcoming My Death Anxiety Related To Lynch Syndrome

The new year leaves me contemplating where I am now, and where I have been to get here. When I discovered I had Lynch syndrome more than five years ago, I was absolutely horrified and developed death anxiety. Every single aspect of my life became magnified. I could not help but feel as though a ticking time bomb had been strapped to my back – it was only a matter of time before it went off. This feeling was warranted, since most of my family had died before I turned 26. My mother died suddenly when I was a young child and this fueled my death anxiety: Those of us who lost parents when we were children tend to project our emotions, fears, and mindset onto what our children may feel once we have gone. We fail to think rationally when it comes to our children but in the end, with time, we are reminded that most children tend to be okay after a parent dies.

My father died in my early twenties and my oldest brother died from colon cancer due to Lynch syndrome at the age of 36 – I was 25 at the time. I was all too familiar with death, as it seemed to enjoy taking my family members at young ages. I watched cancer ravage my brother and eventually kill him. It is one thing to die quickly like my mother, but another to slowly and painfully endure cancer for months, sometimes years, until it finally allows you to take your final breath. My death anxiety was at an all-time high, due to the fact I encountered too much death too early in my life.

Losing my mother when I was young influenced my decision to undergo risk-reducing prophylactic surgeries related to my gene mutation right away. I have a son, and the thought of leaving him motherless was my greatest fear. I was 40 at the time of my surgeries – little did I know that the measures I would undergo to save my life would change my life profoundly, forever.

Personally, being diagnosed with Lynch syndrome has been a double-edged sword. I am thankfully 46 and cancer-free now, and still here for my son. Unfortunately, I often feel tremendous survivor’s guilt (you can read more about that in Tameron Harvell’s recent post) because I have outlived my oldest brother by ten years – his colon cancer was detected too late.

It took a constellation of factors for me to achieve some semblance of normalcy following my surgeries. Years of tweaking hormone replacement therapy, psychotherapy, medical intervention, lots of reading (especially about cancer and genetics), meditation, acupuncture, and finding doctors well-versed in Lynch syndrome screening protocols helped me reconcile my diagnosis.

With the passage of time, I have come to terms with my diagnosis, but the greatest challenge I now face is with my son. I fear he may have inherited this mutation from me. Each child of a Lynch syndrome gene mutation carrier has a 50/50 chance of also inheriting the mutation. Lynch syndrome typically causes symptoms in adults, so unless a family medical history suggests otherwise, it is not recommended that minor children undergo genetic testing.

With tremendous mindfulness, I have raised my son to be an independent, self-sufficient teenager just in case I am no longer here – this has lessened many of my fears. I have tried to set a good example for him through my lifestyle and medical vigilance, just in case he is diagnosed with Lynch syndrome, too.

I no longer fear Lynch syndrome as I once did. But I do worry about those who could have Lynch syndrome, yet are not receiving proper medical management. In a February 2016 study, only 30% of medical specialists (endoscopists) looking after participants at increased risk for Lynch syndrome (formerly called hereditary non-polyposis colorectal cancer)recommended colonoscopy screening every 1-2 years (as per medical guidelines). This is absolutely unacceptable and Ihavelynchsyndrome.org is on a mission to change this by helping those with Lynch syndrome fill knowledge gaps and get the best medical care possible.

With the passage of time, the emotional gravity of knowing you have Lynch syndrome should lessen, too – particularly if you are vigilant with your health and you have doctors who are well-versed in Lynch syndrome screening.

As we kick off 2017, make a commitment to take care of yourself to the best of your ability, capture and enjoy every fine, joyous moment life has to offer – take that trip, buy those shoes, live a little more and harder. Try to reduce the stress in your life while you besiege yourself with more loving, kinder people, and do the things that truly bring you happiness.

Live your life to the fullest; and then, and only then, die. Don't leave any unlived life behind.

- Irvin D. Yalom, “The Schopenhauer Cure”



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