How a family history of dying young shaped Ami McKay and changed cancer research
This interview originally aired on Sept. 28, 2019.
Her family has a history of dying young, thanks to a genetic disorder called Lynch syndrome. In the memoir Daughter of Family G, McKay explores this family history while grappling with the fact she tested positive for the gene while raising a family of her own.
In June of 2020, Daughter of Family G won the Evelyn Richardson Non-Fiction Award, which recognizes a work of nonfiction by a Nova Scotian writer, and the $2,500 Robbie Robertson Dartmouth Book Award for non-fiction, which recognizes books that "have contributed the most to the enjoyment and understanding of Nova Scotia and its people."
McKay spoke with Shelagh Rogers about writing the award-winning memoir.
"I had stories growing up from my mom and from my grandmother Alice, who was an amazing storyteller. I would sit at her feet and to listen to her tell stories going all the way back to my great-aunt Pauline. Pauline knew she was going to die young and knew exactly how she was going to die.
"She had painstakingly traced symptoms and age of onset and death certificates from the family of members who had already died of cancer going all the way back to 1856, after the family had emigrated from Germany."
The power of knowing
"The particular variant of the MSH2 mutation was found because my mom had donated her tissue samples and blood. They found it in her DNA. Up until that point — up until the time we had a test — all we had were our stories.
"There was a period in time when it was a death sentence. Surgery hadn't caught up with the disease. We didn't always know if there were environmental factors or if there was something in our blood that was causing this. In our family, it seemed like something was happening. We wouldn't find out until much later what it was.
We had proof that it is in our DNA and we need to be proactive. Having that knowledge truly is power.- Ami McKay
"Dr. Lynch had followed our family from the 1960s. He uncovered that research on our family had actually began in 1895. It was the longest, most detailed cancer genealogy on the planet. We had proof that it is in our DNA and we need to be proactive. Having that knowledge truly is power."
"I think it takes some people longer than others to get tested. It didn't take me that long to come around to it. Part of it was trying to figure out how I was going to cope with it if I was positive — and something inside me told me that I was. How you deal with that is something that's constantly in the back of your mind.
"I weighed all of that. In the end, I had two amazing sons. There's a 50 per cent chance that if you are carrier of Lynch syndrome that you pass it along to your children. If you don't have the gene then it ends with you, it doesn't skip generations. Having an answer was going to give me peace of mind or it was going to give me the knowledge that I needed to figure out what to do next.
"I have no regrets now that I got the test and I got it as early as I had. I was one of the very first people to be tested on the planet."
Ami McKay's comments have been edited for length and clarity.