Calling Out a Silent Killer

Only seven years later, MOCA has grown into one of the nation’s largest and most active groups of ovarian cancer patient advocates—and has become one of the largest nongovernment funders of ovarian cancer research in the country. So far, the alliance has awarded $1.7 million in research grants to scientists and doctors at the Mayo Clinic and the U of M who are investigating everything from potential biomarkers of the disease to whether spiritual healing can improve the quality of patient care. For many members, the goal is an early test that could detect ovarian cancer the way a Pap smear can detect cervical cancer and mammography can find a breast mass before a woman finds it herself. In the meantime, members want to make sure women are attuned to the sometimes subtle symptoms of this silent killer.

Interestingly, members say they’ve gotten an unexpected boost from, of all sources, Viagra. “Who would have ever thought you would have ads for erectile dysfunction during the Super Bowl?” says MOCA executive director Kathleen Gavin. “We can talk about everything now. Everything’s out in the open.” And that includes the symptoms of ovarian cancer—bloating, pelvic or abdominal pain, a feeling of fullness, and a frequent or urgent need to urinate.

The survivors received another boost in June when experts from the American Cancer Society, Gynecologic Cancer Foundation, and Society of Gynecologic Oncologists came together to urge women who have any of those symptoms for a few weeks to see a doctor. Though ovarian cancer was long believed to give no warning signs, the new advice recognizes the latest research into common symptoms experienced early on by many patients.

“The medical community is finally catching up to what the advocacy community has been saying for a long time,” says Gavin, who hopes the teal-colored ribbons displayed in September—National Ovarian Cancer Awareness Month—will someday be as successful at pushing the importance of early detection as pink ribbons have been at reminding women to schedule their yearly mammograms. There are signs the campaign may already be working. This year’s Miss USA, Rachel Smith, declared that ovarian cancer awareness—not world peace—was one of her pet causes.

But unlike breast cancer, with its nearly 90 percent five-year survival rate after diagnosis and huge survivor community, ovarian cancer has a survival rate after five years that’s only 44 percent. Another recent study showed that only one of three ovarian cancer patients receives the full, recommended surgical treatment for the disease. And when it comes to creating a large public-awareness movement, Gavin says, “the fact is we just don’t have the survivors.”

MOCA’s leadership provides a painful reminder of that reality. Molly Cade and Kris Warn—two of the women at that first Good Earth gathering eight years ago—have lost their battle against the disease. Co-president Merle Rosenberg and vice president Laura Devereaux died last year. Board member Raine Snyder died in May 2006, only days before the alliance’s annual meeting, during which she had planned to announce an education fund in her honor—a fund she had insisted would not be a memorial.

The toll is one of the reasons Kleinbaum decided it was time to tell her story to the medical students, even though she was nervous about speaking in public and has a full and busy life with her four grandchildren all born since her diagnosis. Kleinbaum believes that getting the word out, even if to only twenty future doctors at a time, will save women’s lives.

“My children and my grandchildren are depending on it,” she tells the students. “And so are yours.”