MEN ON A MISSION
The ‘breast cancer gene’ makes guys sick, too. These survivors are spreading the word
WHEN doctors told Arnaldo Silva of Middlesex, NJ, that he had breast cancer, he was dumbstruck.
“They were talking Chinese to me,” Silva, 68, tells The Post. He hadn’t even known that a man could get breast cancer.
His shock was compounded a month later, when his 33-year-old daughter, Vanessa, was diagnosed with the same disease.
At that point, oncologists urged father and daughter to get tested for BRCA gene mutations, which Silva had never heard of before. He and his daughter both tested positive.
Mutations of the BRCA1 and BRCA2 genes — which are responsible for repairing damage to our DNA — are inherited traits that increase a person’s chance of developing several types of cancer. There is a 50 percent chance of carriers passing a mutation on to their offspring, as Silva did.
Normally, BRCA genes “have a protective effect” against cancer, Dr. Susan Domchek, director of the Basser Center for BRCA at the University of Pennsylvania, tells The Post. But mutations stop those genes from doing their job. As a result, carriers are likelier to develop cancers earlier in life than noncarriers — and more aggressive cancers, too. The Basser Center estimates that as many as 1 in 500 people are carriers of the mutation; that population rises to 1 in 40 among Ashkenazi Jews.
BRCA mutations are widely considered a women’s-health issue. It’s not untrue: Female carriers have up to a 75 percent chance of developing breast cancer and up to a 50 percent chance of developing ovarian cancer.
But men can also inherit and pass down this gene mutation — as well as its life-threatening effects.
Of the two mutations, “BRCA2 is more strongly associated with risks to men,” Domchek says. Male carriers’ breast-cancer risk can rise by 10 percent and their prostate cancer risk by 25 percent. Both male and female carriers see their pancreatic-cancer and melanoma risks rise by 5 percent.
While women’s risk numbers may be more staggering, male carriers face a unique set of challenges.
The first is lack of awareness: For every 10 women who get tested for BRCA mutations, only one man does, according to a
study published this June in the Journal of the American Medical Association — a stat that underscores how many men mistakenly believe themselves exempt from the threat.
That was the case for Harvey Singer. The accounts director from Rochester, NY, was devastated when his mom and sister were both diagnosed with breast cancer in 1995 — but never imagined that he would one day suffer with them.
“I thought, ‘I’m not going to get breast cancer. I’m a guy,’” Singer, now 64, tells The Post.
Eleven years and two relapses later, his sister, Vicki, learned she was a carrier of the BRCA2 gene mutation. She urged her brother to get tested. He didn’t. Six months later, he was diagnosed with breast cancer at age 51, and prostate cancer a year and a half after that. When he did finally get tested, about a year after her initial suggestion, he tested positive.
Fortunately, Singer’s in remission from both diseases today, but he still regrets “waiting to get sick” and not getting tested sooner. Today, he and his sister run HIS Breast Cancer, a foundation that educates men at risk for the disease about how to “be proactive.”
But what does being proactive mean for men with a BRCA mutation? While women can take preventative surgical measures to reduce their cancer risk — such as having mastectomies, as BRCA1 carrier Angelina Jolie famously did in 2013, or hysterectomies — men’s options are much more limited. “You can’t . . . preventively remove a pancreas, and you’re not going to preventively remove a prostate,” Domchek says. She believes the real benefit of BRCA testing for men is early detection: “It would allow us to give targeted medical intervention and to cure it if it is caught at the right time.”
Even men who know about BRCA mutations might not be sure whether or not they need to get tested. That’s why Dr. Todd Morgan, who runs the University of Michigan’s clinic for men with BRCA mutations, recommends that men pull together a comprehensive family cancer history, spanning not “just” prostate cancer, but pancreatic, breast, ovarian and colon cancers, too. “As men begin to really talk to their mothers and hear about their grandmothers and aunts and incorporate that into their family history, it will give us all a better understanding of who really needs genetic testing,” he tells The Post.
Steven Merlin is a living, breathing example of how valuable knowing your family history can be. “I’m a walking miracle,” says Merlin, of Interlaken, NJ. In 2012, the former medtech worker was suddenly diagnosed with stage 4 pancreatic cancer. Like Singer and Silva, he had a family history of cancer, which he frequently reminded his care team about. His doctors decided to have him tested for the BRCA mutation — and when he came out positive, he was able to enter a clinical trial available only to patients with BRCA.
I thought, ‘I’m not going to get breast cancer. I’m a guy.’” — Breast- and prostatecancer survivor Harvey Singer, 64
He still takes medicine from that trial today, and his multiple tumors have shrunk or completely disappeared. “I’m living a great life,” he says.
Silva hopes that in the future, he and his daughter can say the same with confidence. Today, he is in remission after a double mastectomy; Vanessa has relapsed twice. He isn’t sure he’ll ever heal from the horror of passing down the gene: “I’m alive, but I’m still walking around with this guilt trip,” he says.
These days, he dedicates his time to the Male Breast Cancer Coalition, a foundation that raises awareness about the disease’s impact on men. He also shares his story, in the hopes that “no other families have to go through what I’ve gone through.
“I hope I’m around to hear that this disease has been conquered,” Silva says. But, for now, “if I can help somebody, whatever it is — [if I can] prevent cancer in somebody else — I’ll take it. Sign me up.”