I recently learned a stat that shocked me.
Up to one in 10 people with cancer may have gotten that cancer because of a gene passed down through their family.
It's true that most cancers are sporadic. For the most part, cancer researchers can’t pinpoint what causes the disease. But, the idea that there’s a group of cancer patients for whom we might be able to predict could get cancer seems incredible to me.
Yet, millions of people are going about their day right now with no idea they have faulty genes that predispose them to specific cancers. Most don’t know there is testing that can confirm their risk for certain cancers as well as special screenings their doctors can use to monitor them and their close relatives for those cancers earlier.
I asked oncologists why there's such a discrepancy, and the common answer I heard is that there is a knowledge gap, preventing patients and providers from seeking out and suggesting genetic testing.
Genetic testing has advanced rapidly in the last 10 years, and it can flag many different cancer-prone genes, oncologists said. Insurance companies have also finally come around to see genetic testing not as an elective service, but one that is critical to early detection. But some primary care physicians aren’t informed of all the available tests, and studies show when doctors are unsure about genetic testing options they tend not to recommend them.
That has a major effect on whether patients seek out testing. A Cleveland Clinic survey found people who later were diagnosed with hereditary cancer said their main reason for not getting tested earlier was their doctor didn’t mention it.
Patients also don’t realize their genetic risk. I’m a good example of that. It wasn’t until I began researching genetic testing for a story that I learned of my heightened risk for breast and ovarian cancers, due to my family’s Ashkenazi Jewish ancestry.
People of Ashkenazi Jewish descent have a 1 in 40 chance of having a BRCA1 or BRCA2 gene mutation. According to the Basser Center at Penn Medicine, this is about a 10 times greater probability than the average person. I had assumed because I am only half-Jewish and have a limited family history of breast cancer it was unlikely I’d be at risk, but the oncologists I interviewed told me I was wrong.
It frustrates me that preventative testing for cancer doesn’t get discussed more. As is often the case with health care in the U.S., it falls into the bucket of things for which patients need to do their own research and advocate for themselves. But it means those who aren’t proactive aren’t getting the health information they need.
But, even with my disappointment, I have hope again after meeting Lisa McGuthry. In an informal chat, she shared her husband’s difficult journey with his late cancer diagnosis and her advocacy for genetic testing and healthy lifestyles. As the owner of Our Favorite Things, a Larchmere boutique and event center, she doesn’t shy away from talking frankly about health issues with her customers, friends and neighbors, primarily from Cleveland’s East Side.
Where there are gaps in the health care system, there are also people like Lisa, starting a conversation and encouraging people to find resources that are available to them. It’s a first step, but I’m grateful to have had that conversation with her. There’s a small chance she may put me on a path to catch a deadly cancer before it’s too late.
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