Bill Kolodin participates in an annual ritual that is a mystery to most men. Every spring, the retired liquor storeowner sits in a room full of anxious women, listening for his name, awaiting his yearly mammogram.
“It’s kind of fun,” says Kolodin, who is 74 and lives in Maryland. “The same gal is there every time. She says, ‘Oh, it’s you.’ The procedure takes 20 minutes, and then I get to walk out the door.”
Kolodin has been lucky so far. Experts suggest that men who, like him, have mutations in their BRCA genes, have as high as a 10 percent chance of developing breast cancer during their lifetime.
In addition, male carriers of BRCA1 and BRCA2 mutations — gene mutations common among Ashkenazi Jews — appear to be more predisposed to develop prostate cancer, with the disease manifesting itself at younger ages than is typical and in more aggressive forms. Those with BRCA2 mutations also seem more likely than the general population to develop melanomas and pancreatic cancer.
Men with BRCA1 mutations need to remain vigilant as well: An unpublished pilot survey conducted by the nonprofit, FORCE: Facing Our Risk of Cancer Empowered, suggests a link between BRCA1 mutations and melanoma. And carriers of the BRCA1 mutation with a family history of pancreatic cancer are, in particular, advised to monitor that organ.
Some studies also indicate a connection between mutations of the BRCA genes — which play a role in repairing DNA — and colon, testicular and stomach cancers. And, finally, rare cancers overall seem more common among carriers of these gene mutations.
“I got angry,” recalls Rabbi Jonathan Adland, recalling his response to the news that he was a carrier of both BRCA mutations. Soon after, the Ohio-based rabbi says he was able to “take control” of what he needed to do, setting up a surveillance program for himself, and informing his relatives, including two adult children, of the news.
The Jewish community has long been aware of the inordinately high rates of breast and ovarian cancer among female carriers of the BRCA1 and BRCA2 mutations, which scientists discovered the mid-1990s. But to date, fewer people have considered the impact of this genetic heritage on men.
“My female patients are surprised to learn that there are male risks,” says Shelly Weiss, who is a genetic counselor at NorthShore University HealthSystem in Chicago. In her practice, she also sees young men, when they are preparing to start families. And still, she says, “Some people are surprised to learn that it can come from the father’s side as well as the mother’s side.”
Some parents with known mutations opt to use in vitro fertilization, and test the genetic status of embryos at the eight-cell stage. They then select those without the mutation.
There is a 50-50 chance of inheriting a BRCA mutation either from a father or a mother. Mindy Gray and her family were “completely taken aback” when her sister, Faith Basser, was diagnosed with ovarian cancer at the age of 42 in 2000. The family history didn’t include this narrative. Their paternal grandmother had died young due to complications from childbirth; a paternal aunt had died of appendicitis at the age of 8. The record was unwritten. Basser, who died in 2002, clued the family in to this genetic heritage.
The BRCA mutation community received good news earlier this year from Gray and her husband Jon, who is global head of Blackstone’s real estate group. The Grays gave a $25 million gift to the University of Pennsylvania, to launch the Basser Research Center for BRCA1 and 2. The research center will focus on improving treatment and prevention of relevant diseases, and also offer support to those affected. But, Gray says, “One thing we can do right now is educate, to teach that the mutation can pass from fathers to daughters.”
Current research underway that directly affects male carriers includes the IMPACT Trial, a large study based in the UK, which is exploring whether PSA screening benefits men who have BRCA mutations.
Men interested in being tested for BRCA mutations no longer need fear employment and healthcare discrimination, thanks to GINA, the Genetic Information Nondiscrimination Act of 2008. But life insurance may be jeopardized, and those interested in being tested might want to obtain life insurance first.
Another obstacle may be the cost of the test, which can run up to $4,000 for a full sequencing of the BRCA1 and BRCA2 genes, and which is not necessarily covered by insurance. Jews of Ashkenazi descent, however, may want to focus on the common “founder mutations.” This test typically costs a few hundred dollars. But it’s also not always covered by insurance. Kolodin, who paid $500 out of pocket, says, “When you’re talking about the future of your kids, grandkids, you can’t let money be the obstacle.”
As for Rabbi Adland, who is 58, he hasn’t modified his behavior much since learning his status. “Most of the stuff is not about diet and exercise,” he says. “It’s about being aware.” Once a month in the shower, he performs a breast self exam, and “thank God I haven’t felt anything abnormal.” Also, he says, “I’m a bit more proactive when it’s time to check my PSA levels.”
He doesn’t have any advice for others who find themselves in a similar plight, but says he would love to be part of a community of male carriers, sharing experiences both negative and positive.
“When women have this mutation, it’s a much bigger game-changer,” he says. “But men need to be supportive of each other. We’re not good at this unless we’re on a ball field. But we need to find a way we can all — or some of us — connect with each other.”
Protocol For Men With BRCA Mutations
The following guidelines are recommended for men who carry the BRCA mutations.
Prostate: PSA screening and annual exam by physician, starting as early as age 40. Men with BRCA-1 and 2 mutations may have up to a 30 percent risk of developing this cancer during their lifetime.
Breast: Clinical exams every six to 12 months by primary care physician, starting at age 35. Some also recommend monthly self-exams, and annual mammograms if enough breast tissue is present. Men with BRCA-1 mutations may have up to a 7 percent risk of developing this disease during their lifetime. For men with BRCA-2 mutations, the risk climbs as high as 10 percent.
Skin: At least one annual visit to a competent dermatologist for full-body scan for adults. Men with BRCA-1 mutations do not have a known risk of melanomas, however, an unpublished pilot survey conducted by the non-profit, FORCE: Facing Our Risk of Cancer Empowered, suggests a link. Men with BRCA-2 may face up to a 5 percent risk.
Pancreas: A tough organ to screen, but individuals with a BRCA2 mutation, or with family history of pancreatic cancer and a BRCA1 mutation, may consider annual endoscopic ultrasounds, preferably performed by a physician who routinely screens the pancreas. Men with BRCA-1 and 2 mutations may face up to a 5 percent risk of developing this cancer during their lifetime.
Colon: While some studies find no link between BRCA mutations and colon cancer, the website at Memorial Sloan Kettering Cancer Center advises beginning colon screening by age 50, and that men undergo colonoscopies every five to 10 years.
This chart is based on information collected from web research as well as conversations with Sue Friedman, executive director of FORCE, a national nonprofit focused on hereditary cancers; Jill Stopfer, genetic counselor at the Abramson Cancer Center at the University of Pennsylvania; and Shelly Weiss, genetic counselor at NorthShore University HealthSystem in Chicago.