How to Live With Lynch Syndrome: There Is Hope

A woman explains how her Lynch syndrome diagnosis altered the way she lives her life, and shares advice for others on how to shift their priorities while maintaining positivity and hope.

A month ago, I took my son to college. It was a milestone I honestly was not entirely sure I would live to see. I was diagnosed with Lynch syndrome a decade ago. It is the most common hereditary cancer syndrome and prefers to manifest in the form of one or several of a dozen different cancers, usually before the age of 50. Both of my brothers have had colon cancer, and sadly, my older brother died from it at 36.

Whenever I have seen my son achieve a milestone, I cannot help but think of my older brother, who died only to leave his infant daughter behind. I think of how fortunate I am to be here for my son, but at the same time, survivor guilt plagues me. I have had opportunities with my child that my oldest brother did not have with his. These opportunities make me feel guilty.

My greatest fear as a mother with Lynch syndrome was dying and leaving my young son behind – I know firsthand what it feels like to be left motherless. My fear of dying young was warranted – I have a strong family history of early death. My paternal grandfather died young of colon cancer, and my maternal grandfather died young from lung cancer. On the paternal side of the family, a couple of my aunts died young – one was struck by lightning in her 20s, and the other must have had some Lynch-related cancer, as she died in her early 30s. Within my immediate family, my mother died when she was 49, most likely due to a heart attack from having familial hypercholesterolemia (FH), and as mentioned earlier, my brother died at the age of 36 from colon cancer. If I were superstitious, I could say that my family is cursed. The common denominator on both sides of the family is that all of these relatives who died early left behind young children.

While I was awaiting my genetic test result for Lynch syndrome, I came across this quote in the genetic counselor's office, and it horrified me: "Lynch syndrome is like an assassin hiding in the attic with a dozen different ways to kill you." Like many others, I initially found the Lynch syndrome diagnosis very threatening, and it would taunt me daily in the form of anxiety. The daily physical reminders from the prophylactic surgeries did not help and kept Lynch syndrome front and center in my mind for years.

Knowing I have Lynch syndrome has allowed me to be vigilant with my health. I have had risk-reducing prophylactic surgeries and frequent screenings to mitigate my cancer risks.

Having Lynch has been a double-edged sword for me. It has been challenging to reconcile on various levels; at the same time, it has kept me mindful and present, made me a better parent and more vigilant with my health.

My immediate family's early deaths and my Lynch syndrome diagnosis would fuel my efforts to do all I could for my son. The goal was to teach him all the life skills necessary and become as self-sufficient as possible – I taught him most of the things I wish I had known before my mother died. By the time he turned 12, he had more life skills than most 25-year-olds.

Over the past decade, I have learned a few things about Lynch syndrome as a patient and an advocate. Many people with Lynch syndrome are wracked with anxiety and fear once diagnosed – they also fret over their child's future. Chances are you know you have Lynch syndrome because someone within your family has developed cancer or died from it. You need to know that knowing you have Lynch is half the battle – a Lynch diagnosis is not a death sentence. The difference between you and them is you now know that you have it, and you can be proactive. Hopefully, you have medical insurance because that will help to be vigilant with your health and surveillance, or, at the very least, catch cancer early when it is most treatable.

Everyone needs to eat well, maintain their weight, exercise and be mindful – these are all necessary for wellness but not enough when you have Lynch. Be sure you have seen a certified genetic counselor so that you understand your mutation, know which screening measures you need and keep on top of them. Talk to your doctor about aspirin therapy. Be sure you have frequent colonoscopies by a gastroenterologist who knows about Lynch syndrome – the quality of the scopes and the doctor's knowledge are essential. Go to places like Mayo Clinic or The Lynch Syndrome Center at Dana Farber if you can afford it.

Living with Lynch made me confront my mortality early on. Irvin D. Yalom’s book, “Staring at the Sun: Overcoming the Terror of Death,” taught me a lot about dealing with death anxiety. Do not take people for granted. Cherish the moments. Live and truly enjoy your life. Work on that bucket list, and you will see your death anxiety decrease.

Furthermore, medical advances are giving those with Lynch syndrome hope. Immunotherapy has shown tremendous promise for those with Lynch syndrome-related cancers, even those dealing with late-stage cancers. There is also a vaccine for us in the works, which targets cancers early in their development, stopping the disease from becoming established.

Please do not despair. There is hope for us.

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