How to Live With Not Knowing

Genetic inheritance, medical uncertainty and how to live “in between” 

My father was diagnosed with pancreatic cancer at 46 and died within 18 months. As I approached the same age as my father was when he was diagnosed, I needed to know: would I share his fate? To find an answer to that question, I did something he never had the chance to do: I took a genetic test.  

I have always felt that if I could plan for what might happen, I could prevent something bad from happening. I now know this is not true—we only have control over so much, but anticipating disaster was a survival strategy when I was young.   

What I can control is making sure I have enough information to make good decisions for myself. And to make decisions regarding my health, I needed to know if I inherited cancer risk.   

To be clear, choosing whether to have a genetic test is personal, and there is no right or wrong choice. It is an option for those who, like me, prefer to have all information in hand. Information makes me feel I am in control. 

I learned my ATM gene has a pathogenic mutation, an alteration with sufficient evidence to be classified as capable of causing disease. Research suggests that people who carry a mutated copy of the ATM gene may have an increased risk of developing several types of cancer, including pancreatic cancer. Guidelines and testing protocols are updated every year as new information is learned.  

To reduce my anxiety, I follow the guidelines. I do what is within my control to manage the discomfort of not being able to predict my future and fearing the worst. 

To me, this is what it means to be a previvor. Previvor is a term specifically for those living with risk. This is the liminal space in between “you have cancer” and “you don't have cancer.” Studies show that roughly 5% of people carry genetic changes linked to cancer risk. It’s hard to know what to do or how to feel when you feel like you’re going through something alone.  

In the years of not knowing, I lived with grief, anxiety, and wondering exactly what I inherited. I wrote a book, Terms & Conditions, about navigating this journey as a way to make sense of it for myself, and to show others they aren’t alone. In my memoir, I interrogate and untangle grief and anxiety as I navigate my health, wellness and relationships. It is, as far as I can tell, the only memoir about the ATM gene, though increasing numbers of hereditary cancer memoirs are so valuable in showing the journeys to living with risk that transcend specific mutations.  

If you lost a parent at a young age, if you have inherited cancer risk, if you are learning how to let go of what no longer serves you: you are not alone; the act of navigating is how we live. 

Amy Goldmacher’s creative work has appeared in The New York Times, Essay Daily, Monkeybicycle, and dozens of literary journals and anthologies. She won the 2022 AWP Kurt Brown Prize in Creative Nonfiction, and her experimental glossary-form memoir about learning she carried an ATM gene mutation, Terms & Conditions, will be published by Stanchion Books on October 6, 2026. She lives in South Florida.