Calling Out a Silent Killer

Ovarian cancer is often called a silent killer. Its earliest symptoms—bloating, fatigue, back pain, digestive troubles, frequent trips to the bathroom—are so familiar to most women on any day of the month they’re usually dismissed as simply the signs of being female. In fact, according to one survey, 36 percent of women with ovarian cancer were first given a different diagnosis, such as depression, irritable bowel syndrome, Crohn’s disease, and menopause. Even worse, 12 percent were told there was nothing wrong, that it was “all in your head.”

The time between the development of symptoms and a diagnosis can be the difference between life and death. When the cancer is detected before it spreads beyond the ovaries, nine out of ten patients survive at least five years. Unfortunately, fewer than one in five cases is caught that early. The five-year survival rate for women whose ovarian cancer isn’t detected until the advanced stages is only 30 percent.

It’s the most lethal of the gynecologic cancers, yet ovarian cancer doesn’t have the hold on most women’s health consciousness that breast cancer does—nor does it have the public awareness and funding. In 2004 (the latest year for which statistics are available), ovarian cancer research received one-fifth of the funding granted to breast cancer and a third of the allotment made to prostate cancer by the National Cancer Institute.

“Most women aren’t aware of any of this until they find out they have it,” says Kleinbaum, a controller at the Minneapolis Jewish Federation and a MOCA board member whose own diagnosis was the beginning of a personal education. “I’ve taught myself so much about this disease,” she jokes, “my doctor calls me ‘Dr. Kleinbaum.’ ”

In September 1999, six of these reluctant experts found each other through a support-group newsletter and gathered for dinner at the Good Earth restaurant in Edina. They discussed the idea of sharing their hard-earned knowledge with other women and raising public awareness along with new money for research. By the following January, they had incorporated. And in September 2000, they held their first benefit, a walk/run race that vowed “silent no more.’’

 “I volunteered to be treasurer—because there was no money,” recalls Susan Kushner, another board member. The group had hoped the benefit would draw about 400 participants, but twice that number showed up, many tossing envelopes containing cash and checks into Kushner’s lap. When she opened the envelopes later that day, she was shocked to discover more than $50,000 in donations. “I thought, ‘Oh, no, this is going to be the weekend we get robbed,’ but, fortunately, we found a good hiding place and were able to keep it safe until we could get it to the bank Monday morning,” she says. Of the alliance’s development, she adds, “A lot of the things we did were kind of dumb, but we didn’t know any better. We were just a bunch of housewives with ovarian cancer.”