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 Health & Beauty | January 2008 
Doctors Take On a Notorious Email
 NYTimes
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For years, a message circulating on the Internet has urged women to demand a special blood test as a way to screen themselves for ovarian cancer. Doctors have dismissed the email, saying the recommended test isn’t reliable. The original author has even softened her stance, telling women the issue is far more complex than she first thought.
But the original message, with its poignant sense of urgency and impassioned pleas for women to spread the word to their friends, has a power all its own.
"I probably answer maybe five or six patients a week who come in saying, ‘I read this email that says I’m supposed to get this test,’ " said Dr. William H. Parker, clinical professor of obstetrics and gynecology at the University of California, Los Angeles, School of Medicine. "I don’t mind educating my patients, but it’s based on bad information."
Now Dr. Parker has decided to wage his own Internet campaign. He and two colleagues have crafted their own missive and released it onto the Internet. Their hope is that the same forces that propelled the first message to popularity can also be used to debunk it. This week, Dr. Parker sent the new message to his friends and acquaintances and set it loose on Internet message boards, starting with the National Uterine Fibroids Foundation, where he is a board member. He is counting on the women who visit the site to tell their friends, and so on and so on.
"I used them as a starting point, and I’ve already gotten a bunch of emails," said Dr. Parker. "If that’s the way it started in the first place, then let’s go the other direction with better information. Hopefully it will have some legs and people will get the right information and stop worrying about this, and stop relying on a test that is incredibly inaccurate."
The original message to which he is referring has several incarnations, but Web sites that track Internet rumors and hoaxes, including Snopes.com and breakthechain.org, confirm that the original letter was written by a woman named Carolyn Benivegna, who wrote the letter in July 1998, not long after her diagnosis with a form of ovarian cancer. Her email explains that her cancer could have been more effectively treated if doctors had used a blood test called the CA-125 sooner. She urges women to tell friends and relatives to insist on the test every year and to forward her email to "everyone you know."
"Be forewarned that their doctors might try to talk them out of it," she wrote. "Don’t take no for an answer."
The CA-125 blood test is a real test that is used to monitor women undergoing treatment for ovarian cancer. It’s also a test used to help diagnose women with symptoms of the disease. But as a screening test, CA-125 often doesn’t catch early-stage ovarian cancer, missing anywhere from 50 percent to 80 percent of cancers. Infections, menstruation, liver disease and other problems can trigger a high number of false positives, prompting worry that too many women would be subjected to unnecessary surgery if the method were used annually for screening.
Although Ms. Benivegna, who is now active in ovarian cancer education efforts, has sent out a second email downplaying the CA-125 and focusing more on cancer symptoms, the rewritten message has yet to gain the same awareness as the original. This week, Dr. Parker launched his own version, written with certain portions in all capital letters, like Ms. Benivegna’s original, and even borrowing some of the original’s language and tone.
"Many women have undergone unnecessary surgery (and anxiety) as a result of this test, while others have been falsely reassured by a normal result — while they actually had ovarian cancer," the new email states. "Emails circulating online urge women to get the CA-125 test and declare it is the ONLY way to detect ovarian cancer. Although this information is well-intended, it is inaccurate, misleading and fear-provoking. Please help to spread the truth about the CA-125 test by sending this email to all your friends, family and others about whom you care."
The letter, which can be viewed in its entirety here, is signed by Dr. Parker as well as Dr. Beth Karlan, director of the Women’s Cancer Research Institute at Cedars-Sinai Medical Center in Los Angeles, and Dr. Jonathan S. Berek, chairman of the department of obstetrics and gynecology at the Stanford University School of Medicine.
Ms. Benivegna, 65, says she still believes too many women with symptoms of ovarian cancer aren’t being given the right tests, and that symptoms are too often dismissed. She is still coping with her own cancer, which has spread.
"I understand it’s not a completely good screening test because of its inaccuracies," she says. "I still feel the test is underused. I get calls a couple times a month because of that email. Sometimes it’s because someone was diagnosed as a result of reading that email. And sometimes it’s just someone who wants to touch base with another ovarian cancer survivor. It’s taken a life of its own."
Dr. Parker says he understands why Ms. Benivegna would have wanted to share her fears in hopes of protecting her family and friends after her frightening diagnosis. "None of us blame her," said Dr. Parker. "But we want the right information to get out." |
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