Calling Out a Silent Killer

Peggy Jennings was spending too many hours at work and too few on herself when she began to notice that her body wasn’t bouncing back from exertion the way it once did. She was tired all the time. Then she came down with pneumonia. Then she noticed her pants weren’t fitting right. But her symptoms seemed so familiar, so commonly lamented by the over-forty set, she was fairly sure she could diagnose the trouble on her own.

“Middle age is pigeon poop,” the then-fifty-six-year-old decided.

But when her annual Pap smear turned up “atypical glandular cells of undetermined significance,” it became clear her condition was more complicated than that. Still, a subsequent transvaginal ultrasound, uterine biopsy, and hysterectomy revealed no sign of cancer. Jennings and her husband were relieved.

Then, five days later, the phone rang—and this time the news was not so good. A consummate list-maker as a member of Gabberts’ marketing team, Jennings picked up a pencil and jotted down the words that would change her life: pelvic washings, peritoneal cancer, chemotherapy, Taxol, Carboplatin.

“We were standing in the kitchen, and my husband read the list over my shoulder and turned as gray as these walls,” Jennings tells a small gathering on the twelfth floor of the Malcom Moos Health Sciences Tower at the University of Minnesota. “Absorbing the news of a cancer diagnosis is surreal. All the fears of a lifetime come to rest.”

As she tells her story, heads nod sympathetically—though Jennings is not here to curry support. She is one of a formidable group of cancer survivors who intend to leave a permanent impression on the hearts and minds of third- and fourth-year medical students at the U of M. She belongs to the Minnesota Ovarian Cancer Alliance, whose members, every six weeks, share their stories with a fresh crop of residents beginning a rotation in obstetrics and gynecology. By speaking out in this venue, MOCA members hope to put a face on a disease that’s usually not diagnosed until its advanced stages, when a patient’s chances of survival are slim.

The alliance includes women such as Jennings, who has three grown children and no family history of gynecologic cancers or obvious risk factors; Ellen Kleinbaum, whose sixteen-year survival after being diagnosed is, she tells the ob-gyn residents, “nothing short of a miracle”; Sarah Noonan, a member of the organization’s Young Survivors’ Network who was diagnosed at thirty-one after going to her doctor with fertility concerns; and Lorraine “Raine” Snyder, who, after four and a half years of misdiagnoses, was so intent on getting her message to the next generation of physicians she dragged her oxygen tank to a survivor training session just days before she died last May.

“My hope,” Jennings says to the medical students, “is that if someday you have a woman in your office who comes to you with symptoms like ours, I want you to think of us.”

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.”

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.”