Program to raise awareness of ovarian cancer

A new, three-phase project aims to increase early detection and boost patient survival rates.

By Stephanie Stapleton, amednews staff. Oct. 2, 2000.

Washington -- Ovarian cancer continues to be a silent killer.

Currently, it occurs in one out of 55 women. An estimated 23,000 new cases will be diagnosed this year, and about 14,000 American women will die. But health advocates say these outcomes can be reversed.

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In cases where ovarian cancer is detected before it has spread beyond the ovaries, more than 90% of patients survive longer than five years. However, only about 25% of cases are now diagnosed at an early stage. As a result, 50% of the women diagnosed die within five years.

The reasons are twofold. For one thing, ovarian cancer in the early stages presents itself as a series of vague symptoms that may also indicate a range of conditions, from gastrointestinal difficulties to hypertension or diabetes. In addition, experts say there is still no ideal, simple and reliable screening tool to help zero in on the cancer. Therefore, valuable chances are often missed while the underlying problem gains a foothold.

Looking back over patients' histories, one often sees that patients were being treated for other illnesses before the symptoms became clear and there was a cancer diagnosis, said Milagros Macasaet, MD, an obstetrician-gynecologist and associate professor at SUNY Downstate University Medical Center in Brooklyn, N.Y. "Physician awareness has got to be raised in the same manner that patients' [awareness] should be," she added.

Seeing the signs

Achieving this end is the objective of a $300,000 pilot program advanced by the Ovarian Cancer National Alliance in Washington, D.C. The project seeks to better inform women, frontline physicians and managed care officials about the symptoms and risk factors of ovarian cancer. The ultimate goal is to improve early detection and increase survival rates.

So far, the program's first phase has been completed. It involved a series of focus groups with patients and physicians designed to gain insights into the knowledge base.

The major misconception among patients was that Pap smears effectively detect ovarian cancer, said Patricia Goldman, president of the alliance and a seven-year ovarian cancer survivor who credits her "vigilant doctors" for identifying her cancer at an early stage.

But doctors, too -- especially generalists -- were not completely informed about the illness.

"Our experience has shown that the key reason for the high rate of delayed diagnosis is inadequate awareness among physicians and their patients," said Herbert Kotz, MD, a retired gynecologic oncologist who now serves as a volunteer consultant at the National Cancer Institute. "Educating doctors about the symptoms and risk factors of ovarian cancer may lead to earlier diagnosis, a decrease in unnecessary testing, appropriate referral to a gynecologic oncologist and improved survival."

In the pilot's second phase, educational sessions will be developed for both patient and physician audiences. The presentations will be given by teams of doctors and cancer survivors. In the end, the alliance hopes to test the effectiveness of these messages and, in turn, spin the pilot off to other metropolitan areas.

For now, most agree that ovarian cancer is often overlooked because it is far more rare than the other illnesses with which it shares symptoms.

"The symptoms of ovarian cancer are so nonspecific at the early stages of the disease that they can mean anything," explained Dr. Macasaet, who is not affiliated with the pilot project. "By the time the stomach becomes enlarged, the cancer has spread."

"Ovarian cancer is more rare," added Goldman. "General family physicians may not see it very often. They may need to be reminded that when they see these common symptoms, they should also think about the ovaries."

Symptoms include complaints such as abdominal pressure or bloating, constant and progressive changes in bowel or bladder patterns, persistent digestive problems and excessive fatigue. Risk factors include increasing age; personal or family history of ovarian, breast or colon cancer; and not bearing a child.

Still, "physicians or patients would [rarely] think of ovarian cancer first," said Dr. Kotz.

"The ovaries are another organ that is there. The ovaries are often not on [the physician's] radar screen," agreed Goldman.

But even beyond raising awareness, the fact that there is still no reliable and easy-to-administer screening test for this cancer adds to the challenge. For cervical cancer, there is the Pap smear; for breast cancer, the mammogram. But health professionals continue to wrestle with tools that are not specific enough to always uncover ovarian cancer.

"Screening to date is not as simple as we want it to be," Dr. Kotz said. Three things are currently used: a blood test, a pelvic sonogram and a pelvic exam. None of those options are sensitive enough, however, and the sonogram is expensive. Dr. Kotz said a new screening mechanism is currently in clinical trials that could be up to 80% effective.

For now, though, experts also say ovarian cancer research is underfunded. The NCI will spend only $62 million dollars on ovarian cancer research this year. This amount is one-seventh of the resources devoted to breast cancer research, although one-third as many women die of it.