The Genetic Albatross Ends With Me

Last month, I wrote about the hardest kind of waiting — where two futures exist simultaneously, and only a blood draw and a phone call stand between them. A 50% chance. A genetic counselor. A referral. A result. I have felt like Atlas, carrying the weight of Lynch syndrome.

My son recently tested negative for Lynch syndrome. This God-foraken genetic albatross will end with me.

I want to linger in these words: my son tested negative. I hoped for this, but years of dealing with our family's genetic history made me prepare for a different outcome. Even now, I am startled rereading the result and slowly accepting that these hopes are now a reality.

The mutation that took my brother Jimmy in his 30s and still threatens my brother Nick — it stops with me. This inheritance, this genetic burden, won't be passed down to my family's next generation.

When my son called to tell me today, I broke down. Tears I didn’t know I carried came all at once. My relief overwhelmed me. Years of bracing, calculating odds and witnessing the syndrome's impact on those I love rushed through me in that moment.

After my son’s call, everything shifted. The world felt lighter and colors sharper. A fog I have lived with since my Lynch syndrome diagnosis lifted. I had spent years seeing life through multiple losses. Now, for the first time in my life, I see what my son gets to have. Everything has changed, and it looks beautiful.

Lynch syndrome has been brutal to the men in my family. My paternal grandfather died of colorectal cancer in his 40s, and my father also got colorectal cancer in his 40s but somehow managed to survive into his 70s. My brother Jimmy was diagnosed in his 30s and died, leaving an infant. My brother Nick survived colorectal cancer but lost his colon and now faces a rare form of biliary tract cancer. So when my son was tested, I was not scared of an abstract 50% risk but of a clear pattern. I saw Lynch syndrome move through the men in my family as if it had nefarious intentions.

My son looks a lot like his uncles: Jimmy's complexion, eyes and hair; Nick's smile and physique. He inherited their mathematical mind, too. That same gift that ran through my brothers and now carries him toward a PhD in astrophysics. Seeing my son’s familiar face always made me wonder what else he had inherited. Visible gifts were clear, but the invisible ones have kept me up at night. Beauty and vulnerability come from the same source and coexist, and my son's likeness to Jimmy brought both love and worry.

I am filled with relief, disbelief and a joy that I have not felt since the day my son was born. In August, my son leaves for graduate school. He will spend his days learning about the universe, its beginnings, shape and vast size. He will face big questions without Lynch syndrome hanging over him. My son won’t have to schedule check-ups or live in fear, as many with Lynch do. He will not have to deal with the costs associated with the syndrome. He can focus on his studies without worrying about Lynch syndrome, which matters more than I can say.

Lynch syndrome still matters to me, even though my son was spared, because I know others go through it. For them, the coin lands differently, just as it did for my brothers and countless other families. My relief is mixed with their reality. What matters is that people can make an informed choice and have full knowledge of inheritance. I did not have that knowledge. That absence troubled me for years, even as the outcome I hoped for finally came to pass.

My son is free of Lynch syndrome, and the burden of this horrendous hereditary cancer syndrome ends with me, and for that, I am eternally grateful.

Georgia Hurst is a patient advocate living with Lynch syndrome and a participant and workshop contributor in the Previvorship in the Platform Society project.

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

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.