A not-so-silent killer

When a gynecologist and three other doctors misdiagnosed April Donahue's symptoms for six months, their confusion was understandable.

She was 24 years old, complaining of bloating and abdominal pain. Even a diagnostician as brilliant as cable television's Dr. House might not have suspected she had ovarian cancer, a relatively uncommon disease that typically develops after menopause.

But she did. It was discovered only because her gynecologist removed what he thought was an ovarian cyst. Fortunately, the tumor was still in an early stage.

Ten years later, when Donahue again developed persistent bloating and abdominal pain, the confusion was not so understandable.

"My gynecologist said, 'You should see a gastroenterologist,'" recalled Donahue, who lives in Kintnersville, Bucks County. "I said, 'No, I'm going to see a gynecological oncologist.' "

Surgery confirmed that the 34-year-old had cancer in her remaining ovary.

Now 40 and president of the National Ovarian Cancer Coalition, Donahue and legions of sister survivors have been urging experts to stop calling the disease a "silent killer" and start raising awareness of its symptoms.

Their hard-earned wisdom is finally winning out.

Three prominent cancer organizations declared their consensus this month that ovarian cancer does have warning signs.

To be sure, these signs - bloating, pelvic or abdominal pain, difficulty eating, feeling full quickly and urinary urgency or frequency - are common to many illnesses, and sometimes bother healthy people. But recent research shows these complaints start more suddenly and are more frequent, severe and persistent in those with ovarian cancer, even in the disease's early stages.

That's why the new recommendations say women who have any of these symptoms almost daily for several weeks should see a doctor.

"Early-stage diagnosis is associated with an improved prognosis," notes the consensus statement from the Gynecologic Cancer Foundation, the Society of Gynecological Oncologists and the American Cancer Society.

It remains to be seen whether more awareness will mean earlier detection - or just a stampede of worried women getting unnecessary tests and exploratory surgeries. Nor is it clear that diagnosing ovarian cancer on average three to six months sooner would improve survival rates.

One benefit, however, seems likely. Prompt diagnosis could reduce patients' frustration.

"Countless women end up seeing three or four doctors before they get the right diagnosis," said ovarian cancer expert Michael Seiden, the new president of Fox Chase Cancer Center. "Doctors often trivialize the symptoms, ascribing them to menopause, or bad diet, or irritable bowel syndrome. When women finally discover it's ovarian cancer, there's usually a lot of anger built in."

The biggest frustration of advocacy and medical groups alike is the lack of a routine screening test.

Like prostate cancer in men, ovarian cancer is readily curable when confined to the organ where it begins.

But a tiny ovarian tumor can't be felt by a physician during a pelvic or rectal exam. And while the PSA blood test has made early diagnosis of prostate cancer the norm, no equivalent exists for nascent ovarian cancer.

The closest thing to such a "biomarker," the CA125 blood protein test, fluctuates with benign gynecological conditions as well as cancer. Similarly, ultrasound may reveal a suspicious ovarian growth that turns out to be harmless. These two detection tools are recommended only for annual screening of women with a strong hereditary risk of ovarian cancer or to monitor patients for recurrence after treatment.

Because it is so insidious, only 20 percent of the 23,000 women diagnosed with ovarian cancer each year are in the earliest phase, known as Stage I.

The disease kills about 15,000 Americans annually, and despite better treatments, it is ruthless. Fewer than half of patients survive five years, compared with 89 percent for breast cancer, which is ubiquitous but usually detected early with mammography.

Doctors have long been taught that by the time symptoms of ovarian cancer appear, the outlook is grim. Presumably, the tumor is crowding other organs, such as the bladder. Bloating and fullness may mean the cancer has invaded the abdominal membrane, causing an abnormal build-up of fluids.

"I certainly think it's a good thing to bring attention to ovarian cancer," said Steven Rubin, chief of gynecologic oncology at the University of Pennsylvania School of Medicine. "But I'm actually quite skeptical that this focus on symptoms is going to lead to saving lives."

A number of recent studies have raised hopes that it could do just that.

A survey of more than 1,700 women with ovarian cancer found that 89 percent of women with early ovarian cancer - that is, confined to the ovaries or pelvic tissues - had symptoms before diagnosis. This is "in contrast to what is published in most textbooks," the research team, led by University of Washington gynecologic oncologist Barbara A. Goff, reported in 2000.

Goff's group is among several to challenge the idea that ovarian cancer symptoms are too vague and common to be useful in flagging the disease.

A symptom such as fatique, which is often among the complaints of ovarian cancer sufferers, is indeed too run-of-the-mill to be telling. But the nature and combination of the four key complaints turns out to be distinctive. For example, two of the key signs, bloating and urinary difficulties, were more severe in ovarian cancer patients than in women with irritable bowel syndrome.

Still, the idea that ovarian cancer is not silent has been a hard sell. Advocates lobbied Congress for five years to win passage of a new gynecologic cancer awareness act named for casualty Johanna Silver Gordon.

Some groups, including the Sandy Rollman Ovarian Cancer Foundation in Havertown, are also sending survivors to describe their misdiagnostic odysseys to medical students.

"We hope it will stick with them when they become doctors," said Wendy Heacock, 57, of Oley, Berks County.

She spent two years complaining of bloating, diarrhea and indigestion; undergoing digestive-system tests. She faults her gynecologist, who knew she had a family history of ovarian cancer, but blames herself even more for not being pushier.

Heacock's struggle, symbolically depicted as climbing a mountain, is part of a mural sponsored by the Rollman Foundation and painted on the Propper Brothers Furniture store in Manayunk.

Ironically, her story also shows why recognizing signs may not improve survival: Her Stage III cancer apparently grew slowly. Some grow explosively.

And, as Fox Chase's Seiden said, "the really lethal ones may not give you early symptoms."

David Warshal, head of gynecologic oncology at Cooper Health System in Camden, said, "It's well documented in the medical literature: Patients have a normal pelvic ultrasound exam, yet within six months, they have widespread ovarian cancer."

Although he worries that greater awareness may lead to "undue concern," that might be better than undue neglect.

"We have been telling patients that ovarian cancer is a silent disease," Warshal said. "It's not."

Although more than a dozen symptoms are related to ovarian cancer, four have been found to occur much more frequently in women with the disease than in those without it.

Those four also tend to arise suddenly, persist and become severe:

Bloating

Pelvic or abdominal pain

Difficulty eating, or feeling full quickly

Urinary urgency or frequency

Women who experience any of the above almost daily for more than few weeks are urged to see a gynecologist for a pelvic exam.

Follow-up with a CA125 blood test and a pelvic ultrasound may be warranted.

SOURCE: Consensus statement of the Gynecologic Cancer Foundation, Society of Gynecologic Oncologists and the American Cancer Society (www.sgo.org)

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Researchers reported last week that a new analysis of the landmark federal study of menopausal hormone therapy had found a small heart benefit for women in their 50s who had hysterectomies and took estrogen without progesterone.

Women in that subgroup had less plaque build-up in their arteries than women taking placebos.

But hormone therapy recommendations are still studded with caveats.

Details and links: http://go.philly.com/healthEndText

New guidelines for women and the story behind the mural: http://go.philly.com/health

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