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Debunking the Chain

Debunking the Chain

When I was 10 years old, I received a chain letter from a family friend in Vermont. Enclosed was a postcard of a covered bridge, which to me was pretty exotic. A bridge that looks like a house? Amazing!

So I bought a dozen postcards, and sent half to the people on the chain letter list. Then I painstakingly reproduced the letter six times by hand. I took this responsibility seriously. I couldn’t break the chain. It had been around the world five times! I wasn’t going to be the one to ruin that amazing record.

I put my six letters with postcards in the mail and felt the thrill of all that potential. Within two or three weeks I’d be receiving more than 300 postcards! I couldn’t wait.

Well you know how this story goes. I received exactly one postcard. Disappointing, to say the least. It was a nice postcard of the Grand Canyon. But still.

Things are very different today. The Internet version of the old fashioned chain letter – the forwarded e-mail – can go around the world five times before breakfast. And just TRY to break the chain!

Actually, that’s what a UCLA professor of obstetrics and gynecology is trying to do – hoping he’ll manage to reach thousands of women who have received a much-forwarded e-mail with erroneous information about ovarian cancer screening.

Heart in the right place

“Have you heard about the CA-125 test for ovarian cancer?”

That’s the subject line of an e-mail Carolyn Benivegna sent to friends in 1998 after 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.

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 letter, 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 at a time on the Internet, trying to put out a more accurate assessment of the test.

Lately 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

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 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), which you can find at this link: http://www.hsionline.com/ealerts/ea200412/ea20041214.html

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

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