BreakTheChain.org
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CA-125 Screening for Ovarian CancerDate Added: June 27, 2002"
This chain letter telling of a cancer detection horror story is true, but it is outdated and the author (not to mention numerous medical professionals) wants it to stop circulating. THIS IS VERY IMPORTANT INFORMATION. READ IT AND FORWARD IT TO EVERYBODY!!! As all of you know, I have Primary Peritoneal Cancer. This cancer has only recently been identified as its OWN type of cancer; but it is, essentially, Ovarian Cancer. Both types of cancer are diagnosed in the same way (with the "tumor marker" CA-125 blood test), and they are treated in the same way (surgery to remove the primary tumor and then chemotherapy with Taxol and Carboplatin). Having gone through this ordeal, I want to save others from the same fate. That is why I am sending this message to you and hope you will print it and give it or send it via e-mail to everybody you know. (Full text pulled at author's request) The letter goes on to tell how the author's cancer could have been more effectively treated if doctors had used the CA-125 test sooner. BreakTheChain.org learned that this letter was written in July 1998 by Carolyn Benivegna just months after her diagnosis and initial treatment for ovarian cancer. In 2002, Carolyn contacted me and requested help in stopping the spread of this outdated letter. "When I wrote the original email advocating the CA-125 test for all women every year, I was not a member of the National Ovarian Cancer Coalition. I had just had ovarian cancer surgery and two chemotherapy treatments. I knew very little about ovarian cancer, but I learned that they would have found my cancer many months earlier if I had been given a CA-125 test. "I had never been told about the CA-125 test, and I had never been informed that I was still at risk for this disease even though my ovaries had been removed through a total hysterectomy many years earlier. Needless to say, I was upset when I wrote that July 1998 email. "Later, I learned that the CA-125 test is not always accurate and that cancer centers and doctors do not recommend it for routine ovarian cancer screening for that reason. "I have spent many hours on the internet trying to track down those web sites that have posted my original email. When successful, I provide them with a more balanced and informative document." Here is Carolyn's revised letter from 2002: I want to tell you a quick story about ovarian cancer. EVERY woman is at risk for this deadly disease, regardless of age, regardless of family history, and regardless of whether she still has ovaries in her body. (It is then called Primary Peritoneal Cancer.) This year, more than 23,000 women will be diagnosed with ovarian cancer in the U.S., and more than 14,000 will die from it. These women are your mothers, sisters, friends, and yes, even your daughters. This disease is more than 90% curable if caught early. Unfortunately, most cases are not diagnosed until the late stages, when it is more difficult to treat. Every woman should know her risks for this disease and be aware of its symptoms. If she has an elevated risk for ovarian cancer, she should be screened annually for it and insist on quality medical care. If tests reveal the possibility that she has ovarian cancer, she should be referred to a gynecologic oncologist for evaluation and treatment. Studies indicate that women treated by these specialists do better and live longer than those not treated by gynecologic oncologists. My cancer journey began in the spring of 1998, when I was 55 years old. I was in excellent health, ate right, and exercised. I felt great - except that my abdomen had rather suddenly enlarged, and I was constipated for a couple of weeks. Because I had a total hysterectomy (including ovaries) many years before that, I went to a gastroenterologist with my symptoms. The first few tests he ran were negative, and I was diagnosed with Irritable Bowel Syndrome (IBS). I didn't feel this could account for my enlarged girth and insisted on more testing. Because of this persistence, I was ultimately correctly diagnosed within a few short weeks with Ovarian Cancer (actually, Primary Peritoneal Cancer). The final diagnosis was made through a blood test called CA-125. Normal is 0-35; mine was 754. (For more information on my diagnosis, treatment, and advocacy, go to the Johns Hopkins website http://ovariancancer.jhmi.edu and click on "Personal Stories." Scroll to Carolyn Benivegna and click on it.) This CA-125 test is not 100% accurate and is, therefore, not considered by most physicians to be a good screening for ovarian cancer. Approximately 80% of women who have ovarian cancer will have an elevated CA-125. Approximately 20% of women who have ovarian cancer do not ever have an elevated CA-125. That is why it is critical to use the CA-125 only as part of a diagnostic regimen that includes a rectovaginal pelvic exam and transvaginal sonography. TAKE ACTION if any of the following symptoms last more than two weeks. Screening for ovarian cancer includes a combination pelvic/rectal exam, a CA-125 blood test, and a transvaginal sonogram. NOTE: Pap smears do NOT detect ovarian cancer.
One or more of the following could put you at above-average risk for ovarian cancer:
If you would like to receive free information about ovarian cancer (via snail mail) please contact me: Carolyn Benivegna
Sadly, Carolyn lost her long battle with ovarian cancer on Sept. 25, 2008, just over 10 years after her original letter to the world would guarantee her immortality online. Not unexpectedly, the corrected version of Carolyn's narrative has failed to gain the popularity of her original. The longer it circulates, the more difficulty it causes for medical professionals who are called on to answer the questions of those who received it. Dr. William H. Parker, clinical professor of obstetrics and gynecology at the University of California, Los Angeles School of Medicine, told Tara Parker-Pope of the New York Times "I probably answer maybe five or six patients a week who come in saying, ‘I read this e-mail that says I’m supposed to get this test.'" Dr. Parker and colleagues, Beth Karlan, MD of the Cedars Sinai Medical Center and Jonathan S. Berek, MD, MMS, of the Stanford Cancer Center, have launched a sort of anti-chain, hoping to benefit on the popularity of Carolyn's original to distribute the other side of the story. Here's their rebuttual: HAVE YOU HEARD ABOUT THE CA-125 TEST FOR OVARIAN CANCER?
Did you know it is NOT an effective screening test for ovarian cancer? Did you know that the American Cancer Society, the American College of Obstetricians and Gynecologists, the Society of Gynecologic Oncologists, the Canadian Task Force on Preventive Health Care, and many other medical organizations recommend that the CA-125 NOT BE USED as an ovarian cancer screening test? Why not? Because it doesn't work! 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. E-mails 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 e-mail to all your friends, family and others about whom you care. CA-125 is NOT an Effective Screening Test for Ovarian Cancer? ALL the existing studies tell us that CA-125 is NOT a good screening test for ovarian cancer. The CA-125 blood test measures a protein in the blood which is produced by normal cells, as well as by cells from common non-cancerous conditions such as endometriosis, fibroids, benign ovarian cysts, pelvic infections, pregnancy, and normal menstrual periods. Non-gynecologic conditions such as liver disease and inflammatory diseases as well as a variety of other cancers also elevate the CA125 levels. For a screening test to be helpful, it must detect disease in individuals who feel entirely well, at a time when the disease is in its earliest and most curable stages. To be helpful, a screening test must be extremely accurate. For example, even a test that is 99.6% accurate will find 1 woman with the disease, but also will falsely inform 9 women that they have the disease when they do not (false positives). For postmenopausal women who have an elevated CA-125 level, most will NOT have ovarian cancer. The test is even less accurate for women prior to menopause. And, in women who do have early ovarian cancer, (those women we need to find since ovarian cancer is still highly curable) the CA-125 levels will be normal in at least 50%. If 10,000 women aged 50 - 64 are screened with CA-125 testing for ovarian cancer yearly, 300 women will test positive and require further evaluation. Twenty-four of these women will need surgery, 20 of whom will not have ovarian cancer and, therefore, be subjected to unnecessary surgery with inherent risks and recovery. Only 4 of the 10,000 women will have ovarian cancer. Similarly discouraging results are found with screening by ultrasound of the ovaries in asymptomatic women. For Women with a Strong Family History Ovarian Cancer 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. Even in the research studies for these high-risk women, the testing has not been shown to be particularly helpful. If you are at high risk, you should discuss testing with your doctor. Symptoms of Ovarian Cancer Women and their doctors should be attentive to the early signs and symptoms of ovarian cancer that seem to worsen and occur daily for more than 2 weeks. The most reliable symptoms include abdominal or pelvic pain, bloating, difficulty eating or feeling full quickly, and changes in bowel or bladder habits. We hope as information continues to be gathered, new more effective methods will be developed that will lead to early ovarian cancer detection The CA-125 test is not recommended as a screening test for ovarian cancer. We wish you good health: William H. Parker, MD
Beth Karlan, MD
Jonathan S. Berek, MD, MMS
References: Screening for Ovarian Cancer: Recommendation Statement
If you want to help your friends and family, make sure that the information you're giving them is timely, true and accurate. Visit the American Cancer Society web site and the National Ovarian Cancer Coalition to find out more about the latest detection and treatment tools. Break this Chain. References: OvaryResearch.com, New York Times Health Blog
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