Ken Schwartz with a photo of his sister Susan Wright, who died of cancer in July. Tim Stepien/The Coastal Star
By Paula Detwiller
If someone told you your risk for developing cancer might be significantly higher than average, would you go through genetic testing to find out?
Maybe, maybe not. Perhaps you’d say, “No thanks, I just want to live my life and take my chances.”
But what if the lives of your children — and your children’s children — hung on that decision?
That’s exactly what Ken Schwartz wants you to think about. Hard.
In fact, it’s practically all Schwartz can think about as he mourns his sister, Susan Wright, who died of cancer on July 2 at the age of 58.
Susan’s death prompted Schwartz, a Boynton Beach resident, to commit himself to educating people about genetic predisposition to cancer. His initial push is to persuade people of this fact: What you don’t know may kill you.
A grim discovery
What Schwartz didn’t know until well after his sister’s ovarian cancer diagnosis — after her disease went into remission and came back again, and she tested positive for the BRCA2 gene mutation — was that he and other family members carried that same genetic mutation.
It came from their bloodline. And it places them at high risk for developing ovarian cancer and breast cancer (which occurs in both women and men).
Like many other Jewish families living in the United States and Canada, the Schwartzes descended from Ashkenazi Jews, who lived for centuries in isolated geographic areas of Central or Eastern Europe to escape persecution. Intermarriage within these isolated populations produced a gene pool with a higher percentage of mutations in the BRCA genes. According to the Centers for Disease Control and Prevention, about one in 40 individuals of Ashkenazi Jewish ancestry has a mutation in the BRCA1 or BRCA2 gene, compared to one in 800 members of the general population.
A quick medical explanation: All of us have BRCA genes. Their job is to repair DNA and control cell division in the breast and ovaries. Mutations in BRCA1 or BRCA2 genes make them less capable of controlling cell division — including the rapid cell division seen in cancerous tumors.
“Until Susan got sick, we never looked into family history,” Schwartz says. When they did, a pattern came to light: Schwartz’s grandmother died of cancer when his father was 8. His father’s two sisters died of cancer in their 30s. And now Susan was besieged with Stage 4 ovarian cancer.
For Schwartz, it was a no-brainer. He decided he must undergo genetic testing.
“I found out I was positive for the BRCA2 mutation. At that point I insisted that my daughters go for the testing, too,” he says.
Both of his daughters, age 36 and 33, were found to have the same mutation. They both made the gut-wrenching decision to undergo precautionary surgical procedures.
“It took a lot of thinking, a lot of genetic counseling, a lot of doctors,” Schwartz says. “But my daughters both decided it was time to take care of business, just like Angelina Jolie.”
The award-winning actress Jolie, who carries the BRCA1 gene mutation, made headlines in May by revealing she’d undergone a preventive double mastectomy to dramatically decrease her chances of developing cancer, which killed her mother at age 56.
Knowledge is power
Schwartz, 61, makes his living as a one-on-one medical exercise specialist. In the weeks since Susan’s death, he has dedicated himself to do whatever he can to get the word out about genetic testing, and why it’s wrong to bury your head in the sand.
“I’m making this a lifetime mission, to stop cancer and to try to keep my sister’s name alive,” he says. “I’m going to write articles every single month and send them to publications. I’m going to talk to genetic counselors and ask them to educate doctors. I want to speak to community and charitable groups about the issue.”
Schwartz is setting up a nonprofit organization called the Wright Foundation for Global Genetic Awareness. His long-term goal is to establish an international online platform for sharing cancer information and research discoveries.
Some of his elderly exercise clients are lending support — both moral and monetary. People like retired corporate titan Kurt Landsberger, 92, who lives in coastal Delray Beach. Landsberger’s 88-year-old companion, Rita Feigenbaum, says Schwartz’s efforts are sincere and necessary.
“I think there is an abysmal lack of knowledge about this important thing that people could be aware of, and save their lives or their children’s lives,” says Feigenbaum. “Somebody needs to be out there talking about it.”
If you’d like to help Schwartz talk about it, contact him at wrightfoundation58@gmail.com.
NOTE: Testing for the BRCA gene mutation can be costly (up to $3,000) and is not covered by all medical insurance providers. But a recent Supreme Court ruling that human genes cannot be patented ended one company’s monopoly on BRCA testing, and has already led to lower prices through competition.
Paula Detwiller is a freelance writer and lifelong fitness junkie. Find her at www.pdwrites.com.
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