A much-forwarded e-mail about an ovarian cancer test is revised

Heart in the Right Place

“Read it and forward it to everybody!”

With those seven words, a small unit of misinformation raced around the Internet, causing unnecessary anxiety for countless women.

Breaking the chain

About 10 years ago Carolyn Benivegna sent an e-mail to friends, informing them that she’d been diagnosed with primary peritoneal cancer. The peritoneum is the membrane that lines the abdomen. It’s made up of epithelial cells, which also line the ovaries, and these cells are where most ovarian cancers originate.

But the more urgent purpose of Carolyn’s e-mail was to inform women about the CA-125 test for ovarian cancer.

The CA-125 test measures a cancer marker that’s often elevated when ovarian cancer is present. In her letter, Ms. Benivegna noted that her cancer would have been discovered much earlier if she had been given the CA-125 test, and she urged women help spread the word and to insist their doctors run this test.

Unfortunately, some of this information wasn’t accurate.

At the time she wrote her e-mail, Ms. Benivegna wasn’t aware that many cases of ovarian cancer are not detected with CA-125. In addition, some common conditions such as pregnancy and normal menstruation can elevate the marker detected by CA-125. So while the test is useful in monitoring the potential for ovarian cancer, the test alone is not reliable enough to make an ovarian cancer diagnosis.

Meanwhile, the e-mail took on a life of its own, forwarded thousands of times and posted on various web sites.

Take two

Ms. Benivegna says she was distraught and fighting cancer when she wrote that original e-mail. She truly felt the information would help many women catch ovarian cancers early, when treatment has a better chance of success.

Later, when she discovered the full details about CA-125, she spent hours on the Internet, trying to reach anyone who may have read her original e-mail.

More recently she’s been helped in that effort by UCLA professor Dr. William H. Parker and two colleagues who have begun circulating a second e-mail to set the record straight and let women know that most postmenopausal women who get a positive result from a CA-125 test will not have ovarian cancer. And the test is even less accurate in premenopausal women.

The new e-mail offers this advice: “Testing high-risk women, who have a very strong family history of ovarian cancer, with twice-yearly pelvic ultrasound exams and CA-125 levels is the current standard of care.”

And the e-mail helpfully notes several ovarian cancer symptoms that should be taken seriously when they occur daily for more than two weeks:

• Abdominal or pelvic pain
• Bloating
• Difficulty eating
• Feeling full quickly when eating
• Changes in bowel or bladder habits

Help spread the word

Whether or not you’ve ever received Ms. Benivegna’s original e-mail, I hope you’ll forward this e-Alert to other women who might find this information useful – especially if they happened to have read that first e-mail and are under the mistaken impression that a positive result to a CA-125 test means cancer.

In addition, you can read about a common dietary choice that increases ovarian cancer risk in the e-Alert “Rocket Food” (12/14/04).

Sources:
“Have you heard about the CA-125 test for ovarian cancer?” William H. Parker, M.D., Beth Karlan, M.D., Jonathan S. Berek, M.D., M.M.S., OvaryResearch.com
“CA-125 Screening for Ovarian Cancer” Break the Chain, 1/20/08, breakthechain.org