‘Previvor’ urges prevention in fighting cancer
Rona Greenberg, right, believes genetic testing and awareness of family history led to her early and successful breast cancer treatment, and wants her daughter Amanda — and others like her — to follow an aggressive surveillance routine.
Photo by Elaine Durbach
September 19, 2012
Rona Greenberg describes herself as a “previvor” — someone who took preventive measures when genetic testing revealed she had a predisposition to cancer.
With a family history of the disease, Greenberg and her sisters — and later her daughters — went for testing for the BRCA mutation soon after it became available in the mid-1990s.
When she found out that she was a carrier, she had a prophylactic hysterectomy in 1998, but decided she wouldn’t have breast surgery.
“I told myself I had taken action to prevent ovarian cancer, and I was being tested so often, I wasn’t going to get breast cancer,” she said.
When that optimism proved false and she was diagnosed with breast cancer in 2010, she didn’t hesitate. It was at a very early stage, but she had both breasts removed, and had reconstructive surgery at the same time. Though she faced post-operative complications and more surgery to replace her implants, she said, “Knowing how high my chances were of getting cancer again, I don’t regret it for a moment.”
Greenberg, who lives in Montclair, is outreach coordinator for the North Jersey region of the grassroots organization Facing Our Risk of Cancer Empowered (FORCE). She believes that awareness of her family history saved her life, and she hopes it saves her two daughters.
“I’m grateful for every day, and I want my kids to have long, healthy lives,” she said. She wants others to get the message, too.
To that end, she and her younger daughter, Amanda, talked with NJ Jewish News earlier this month. Sept. 23-30 is National Hereditary Breast and Ovarian Cancer Week. “National Previvor Day” is celebrated in the middle of that week, on Sept 26.
The day is designed to raise awareness among women and men and to boost research and prevention efforts. Among other activities, FORCE, which sponsors Previvor Day, urges genetic counseling for all those who might be at risk.
Advocates say that given the advances in research on ovarian and breast cancers over the past 13 years, many lives can be saved or significantly extended if individuals learn about their family history and take proactive steps to either prevent the disease or detect it early when it might be easier to treat.
The founder of FORCE, Sue Friedman, is Jewish, as are many of the members. One in 40 Jews of Eastern European descent carries either the BRCA1 or 2 mutation — the highest incidence of any population group. Greenberg pointed out that while a fairly low percentage of cancer cases are associated with those gene mutations, people who are carriers have an 85 percent chance of getting breast cancer in their lifetime and 50 percent chance of getting ovarian cancer. And whether they get cancer or not, men and women can pass the mutation on to their daughters and sons.
Greenberg, a retired school speech pathologist, acknowledges that for some people those figures are intimidating. The most radical preventive measure — removal of breasts or ovaries before any disease is detected — stops most in their tracks. “I know it’s scary. They’d rather bury their heads in the sand,” she said. “I have a different approach. I want to know everything there is to know. What’s worse — to think about it all and go through the procedures, or to get cancer?”
Greenberg’s mother died of cancer at 43, when she was just 19. Her grandmother died at 40, probably also from cancer — though the euphemisms of the time make it hard to confirm. When she and her girls were found to be carriers, they signed on for a high-risk surveillance program — a demanding regimen of six monthly tests, alternating mammograms and MRIs, with doctor examinations in between.
Life hasn’t been smooth since then. Her second husband, Mel, was killed in a car crash three and a half years ago. But she has a new partner, Brian Glasser — who lost his wife to brain cancer. They have a new, beautiful home, and plans for plenty of travel and adventure.
Amanda, 29, a marketing executive, is engaged to be married next spring. She is hoping to have a family before needing to take any radical measures, but said she wouldn’t hesitate to have preventive surgery after that. “The idea of a prophylactic mastectomy might be horrible, but it reduces the risk of cancer so much, it makes sense,” she said.
Greenberg said those with personal concerns or wanting to know more about FORCE are welcome to contact her at RonaG@FacingOurRisk.org, or to go to www.FacingOurRisk.org.
Need to know
What members of the Jewish community need to know about hereditary breast and ovarian cancer:
• BRCA mutations have been found in people of every ethnicity, but people of Eastern European Jewish ancestry have the highest known incidence of BRCA mutations and hereditary breast and ovarian cancer.
• About one in 40 people of Jewish descent have a BRCA mutation, about 10-fold higher than other populations.
• Women with a BRCA mutation have up to an 85 percent lifetime risk for breast cancer and a 50 percent lifetime risk for ovarian cancer.
• About 40 percent of Jewish women with ovarian/fallopian tube cancer and 20 percent who have premenopausal breast cancer have a BRCA mutation.
• BRCA mutations are associated with other cancers, including breast, ovarian, fallopian tube, primary peritoneal, pancreatic, melanoma, prostate, and male breast cancer.
• Each child of an affected parent has a 50 percent chance of inheriting a BRCA mutation. BRCA mutations can be passed down equally from fathers or mothers to sons or daughters.
• Men with BRCA mutations should discuss the benefits, limitations, and risk of prostate screening with their doctor beginning at age 40.
• Preliminary research suggests that prostate cancer in men with a BRCA mutation may be more aggressive than prostate cancer in men who do not have a BRCA mutation.
• Men with BRCA mutations are also at risk for melanoma and male breast and pancreatic cancer.
• People who test positive for a BRCA mutation have options to lower their risk for cancer or detect it at an earlier, more treatable stage.