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Ovarian Cancer is the Most Deadly Gynecologic Cancer With Symptoms That 'Whisper'

Posted on: Thursday, 22 September 2005, 15:00 CDT

Stories by HEATHER GEHLERT/For The Patriot Ledger

CA-125. Sounds like a West Coast freeway, but it's not. It's a tumor marker. And probably any woman whose life has been touched by ovarian cancer either cringes or breathes a sigh of relief when she sees or hears it. For some women, it helps answer a long-held question: Do I have cancer? For others, it adds to the stress and uncertainty of knowing in your gut that something is wrong but not knowing what. That's because no reliable, FDA-approved, doctor- endorsed screening test exists for ovarian cancer. Scientists are exploring potential biomarkers such as osteopontin, a type of protein that is elevated in women with ovarian cancer, but, for now, the CA-125 - an inexpensive but often inaccurate blood test - is as close as it gets. Unlike cervical cancer, ovarian cancer cannot be detected with an annual Pap exam. And unlike breast cancer, it has no concrete early warning signs. "Its symptoms often masquerade as something else," says Dr. Arlan Fuller, chief of gynecologic oncology service at Massachusetts General Hospital. Common symptoms including gas, fatigue and upset stomach are problems most people experience at one time or another. "You say I'm just getting fatter, I'm just getting older, I've got the bloats," Fuller said. Unlike breast cancer, ovarian cancer is off most people's radars. Unless you're a physician or medical student, you probably haven't studied it, and unless you or a family member has been diagnosed, you probably don't think about it. No proven screening combined with lack of widespread public awareness makes for a deadly combination. Ovarian cancer is the fourth leading cause of cancer- related deaths in women, behind lung, breast and colon cancer. The American Cancer Society estimates more than 22,000 new cases will be diagnosed this year and more than 16,000 will die from it. Ovarian cancer has the highest mortality of all cancers of the female reproductive system: About 70 percent of those diagnosed will not survive. Time is essential with such an unforgiving disease, said Barbara O'Brien, an ovarian cancer survivor from Arlington and president of the National Ovarian Cancer Coalition Massachusetts Division. Early diagnosis greatly increases the likelihood of survival, but even then, women can relapse. "I feel like there's this guillotine over my head," said O'Brien. "It may come down today. It may never come down." A diagnosis of ovarian cancer often means months or years of an unquiet mind - always searching, always questioning. How could this have happened to me? What could I have done differently? What could my doctor have done differently? Why wasn't this detected sooner? How can I keep other women from having the same fate? These last two questions guided Carolyn Benivegna's hands as she launched an internet missive in 1998, after being diagnosed with stage-III ovarian cancer. Though the CA-125 was developed in the early 1980s, the hullabaloo surrounding it began in with Benevigna's e-mail, now known as Kathy's story. Its text contained an alarming message: Every woman should insist on getting a CA-125 as a supplement to their annual physicals. "Don't take no for an answer," Benivegna writes in the e-mail. Jaded by the amount of time it took before she received a diagnosis and enraged at the thought that, had a CA-125 been run earlier, doctors might have caught the cancer before it spread, Benivegna lauded the test without mentioning its limitations. The test is notorious for yielding both false positives and false negatives, meaning it might indicate that a cancer-free woman does have cancer or that a woman with cancer does not. The CA-125 takes its name from the CA-125 (carbohydrate antigen 125), a type of serum that is elevated in about 80 percent of women with ovarian cancer. But other gland- forming cancers - lung, colon and breast - can trigger a surge in the test, pushing the number beyond the normal range of zero to 35. Even chicken pox, pregnancy or menstruation can skew test results. Physicians, gynecologic oncologists, the FDA and the American Cancer Society agree the test is not sensitive or specific enough for widespread screening use. "There is a reason why the FDA has not approved the CA-125 as a screening test in the United States, and it's not to deprive women of adequate health care," said Dr. Ross Berkowitz, director of gynecology and gynecologic oncology at Brigham and Women's Hospital and Dana Farber Dana Farber/Brigham and Women's Cancer Center. In post menopausal women - a group at elevated risk for developing ovarian cancer - the false positive rate for the CA-125 is 3 percent. This means if a doctor were to screen 10,000 asymptomatic post-menopausal women, 300 of the results would be false positives and only 10 would be true positives. In pre-menopausal women - a group with a lower ovarian cancer prevalence rate - that number is even more impressive because the false positive rate is higher and the prevalence rate is lower. For every 10,000 women screened, 600 would be false positives and only three would be true positives. And, Fuller said, "Half of all true positives turn out to have advanced disease anyway. (Ovarian cancer) spreads very early and very silently." Doctors hesitate to use the test as a screening because they don't want it to be overly alarming or reassuring. But they do order it as a part of the overall diagnostic workup and to monitor the disease after a woman has been diagnosed. Fuller says the key to understanding the CA-125 lies in the distinction between screening and diagnosis. Screening means running a test on someone with no family-history, symptoms or age- related risk factors. Diagnosis occurs only after there is reason to believe a woman might have ovarian cancer. Even though ovarian cancer survivors understand the limitations of the test, many still stand by it. "It's tough to explain to us why this isn't a good enough test," said O'Brien. "It was accurate for me." O'Brien acknowledged that the test produces false positives, but, she said, "I would rather be concerned and later find out I'm fine.""It might not be 100 percent accurate, but it's better than nothing," said Whitman resident Patricia Butler, now 41, who was diagnosed with Stage I-C ovarian cancer 10 years ago. Butler said she is proof that women of any age can get it. Butler did not have a CA-125 before her initial prognosis, but her doctor did use it to monitor the disease after she had surgery. Now, she doesn't want the same thing to happen to her daughter. "So history doesn't repeat itself, if my daughter at age 20 starts having a CA-125 or transvaginal ultrasound, that's fine with me," she said. Concerning the test's lack of specificity, Butler said that should not prevent doctors from using it both as a diagnostic tool and screening. "If it's positive, there's something wrong," she said. Butler added, it's just a matter of figuring out what. Eight years after Benivegna hit send and created a frenzy among women wanting to know if they could have ovarian cancer, women are still asking physicians, "Should I get a CA-125?" Any worry the e-mail spawned might have been worth it, said Dr. Elizabeth Dupuis, chief of Quincy Medical Center's women's health program, who had "a fair number of patients" raise questions in response to the e-mail. "It aligned some of the worry that they weren't doing something that they thought they should be doing," she said. "That they weren't overlooking something by not having a CA-125." Both patients and physicians agree that until a more accurate screening method is developed, education is the best way to catch ovarian cancer early. Doctors need to be vigilant and women need to trust their instincts. "The only thing you can do is a yearly checkup and really, really listen to specific symptoms," said Dr. Robert Vanderlin, head of obstetrics and gynecology at South Shore Hospital. For doctors examining women with lower abdominal symptoms, especially for those age 45 and older, "You've gotta think ovarian cancer number one, number two and number three. The other stuff, it doesn't matter as much if you miss it because it's not going to kill her." The National Cancer Institute's investment in ovarian cancer research Funding has increased 143 percent, from $40.9 million to $99.4 million between 1998 to 2003, but it is still in short supply compared with the $548.7 million earmarked for breast cancer. In an effort to educate women about early warning signs and to raise money for research, September has been designated as Ovarian Cancer Awareness month.

Sadly, many women don't survive their battles with ovarian cancer to become advocates. "There's just sheer numbers of (breast cancer) survivors that makes their message so successful," said Jean McGrath, a Plympton resident who was diagnosed with stage-IV ovarian cancer in February, 2000. "Sometimes I just wish we could jump on the bandwagon with them and have a joint education program." Legislators have echoed this sentiment by pushing for the passage of two bills - one in the house and one in the senate - that, if passed, would allocate $15 million for a national ovarian cancer public awareness campaign for three years, beginning in fiscal year 2006. "Education can save your life," said O'Brien. "Ignorance will kill you and that is so true of ovarian cancer in particular."

Source: Patriot Ledger, The; Quincy, Mass.

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