Living with Lynch Syndrome

Oct. 1 marks Previvor Day — a day set aside to acknowledge those of us who carry a hereditary cancer syndrome or a genetic mutation that significantly increases our risk of cancer, but who do not (yet) have cancer. It's a day that can feel complicated. For me, as a woman with Lynch syndrome, being a "previvor" has never been a tidy, inspirational label. It's layered with grief, fear, resilience and an ongoing fight to claim peace in a life that sometimes feels like it's not entirely mine.

Lynch syndrome, the most common hereditary cancer syndrome, affects roughly 1 in 279 Americans — about 1.2 million people. It significantly increases the risk of colorectal, endometrial and other cancers, often at younger ages than the general population. Early detection through genetic testing and proactive preventive measures, such as regular screenings or preventative surgeries, can dramatically reduce risk. Unfortunately, many people with Lynch syndrome remain undiagnosed, making awareness and education crucial.

I often describe Lynch syndrome as a double-edged sword; it's both a burden and a gift. It's a burden because it has taken so much: my older brother, my ovaries and my carefree sense of health. It has forced me into surgical menopause, endless screenings and the looming shadow of "what if." It's a gift because knowledge is power, but only when it is actionable. My diagnosis gave me a chance at prevention — the chance to take action before cancer could claim me. That opportunity is something so many others never got.

I also carry the ache of loss. Last year, my best friend of 30 years, Catherine, died suddenly of a heart attack and I was the one who found her. Her death was a tragedy, but thankfully not one tangled in regret. I told her I loved her every day; I saw her often; we were always there for one another, and we never once took a moment with each other for granted. Catherine wasn't just my confidante — she was my chosen family. Catherine taught me how to cook, about plants, to live well, to have grace, and, most importantly, how to love and be a best friend. Losing her left a gaping hole in my life that will never fully close. Still, it also affirmed something I had long understood because of Lynch syndrome: life is fragile, and the time we have with the people we love is everything. It must never be taken for granted, and we must make a concerted effort to seek out beauty in people and life.

So when I say I am a previvor, I mean more than someone who had surgery or endures scopes and scans. I mean someone who walks daily with uncertainty, who has faced grief head-on and who still chooses life, however imperfect, however heavy. I am someone who has had to fight not only to save my body from cancer, but also to save my mind from being consumed by fear and sorrow.

But being a previvor is not just about me. Previvor Day is a reminder that we exist as a community. We are the people who fall through the cracks of language — not patients, not survivors, but something in between. We navigate a medical system that is often dismissive of our needs. We shoulder the sky-rocketing cost of annual health insurance deductibles, the long-term consequences of preventative surgeries, never-ending screenings, and frequent anxiety. We grieve silently when family and friends don't understand why we make the choices we do.

If there is one message I want to leave this Previvor Day, it is this: prevention matters. Genetic testing matters. Knowing your family history matters. My son knows his risks because I know mine. These conversations are not easy, but they save lives. Being a previvor is not about heroism – it is about vigilance. It is about choosing surveillance and prophylactic surgeries, specifically if you’re female, instead of ignorance. It is about acknowledging grief while still making room for joy. It is about claiming agency over the things you can control, and surrendering to the truth that some things will always be beyond your control.

On Oct. 1, I honor all of us who live in this in-between space — those who carry the weight of "what if" every single day, those who have taken drastic measures to outsmart their DNA, and those who are just beginning to grapple with what a genetic diagnosis means for them and their families.

To my fellow previvors: you are seen. You are not alone. Your choices matter, your voice matters, and your life matters.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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