When Your Genes Determine Whether You Live or Die

I spent years afraid to see a doctor, but eventually, I needed to know what the tests would say about my cancer risk

Photo: Victoria Strukovskaya/Unsplash

My life began with an unexpected mass.

Though my parents had been trying to have a child, it wasn’t until my mother took a routine pregnancy test before a surgery to remove ovarian cysts that she found out she was pregnant. The cysts would have to stay until I came out, stubborn as always, feet first.

I tell this to the woman sitting across from me at a round table. The room we’re in looks like a conference room, somewhere I would sit with other educators to discuss adjustments in curriculum or how to handle a troublesome student. Instead, I’m sitting there while my girlfriend holds my hand and a genetic counselor asks me about every instance of cancer in my family, every instance of growth, malignant or benign. She draws circles for women and boxes for men, shading in various areas to indicate all the ways my family’s genes have decided to mutate over time, causing a malfunction, a mass, or a question about how much longer they might have to live.

I’m here because my doctor recommended it. Or at least, that’s the short story. This is the one with more truth: I’m here because my mother died from breast cancer, and I’m terrified I’ll die at a young age, too. This fear, rooted in PTSD, has made going to see a doctor, any doctor, a Herculean feat. Scared that someone is going to pronounce me imminently mortal, I have avoided being anywhere near a doctor’s office, even at times when I desperately needed one: the flu, a kidney stone, and a sprained ankle. Once I understood that this plan of never seeing a medical professional was not sustainable, I began to speak with my therapist about ways I could overcome my fear. We decided to confront it head-on.

When Dr. Mary-Claire King first started working on identifying a genetic cause for cancer, she needed to gather families who would let her talk to them, take their blood, and look at their tumors. She needed families where cancer rates ran high, where cancer seemed almost inevitable. She found them. Lots of them. And by concentrating on families who exhibited early onset cancer, they were finally able to…