Carolyn's Revised Email (2000)

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 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. (For more information on the CA-125 test go to

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.

• Vague but persistent gas, nausea, indigestion, constipation, or diarrhea.

• Abdominal bloating, feeling of fullness, or pain.

• Frequent or urgent urination.

• Menstrual disorders, pain during intercourse.

• Fatigue, backaches.

• Weight gain or loss

.• Abdominal distention.

One or more of the following could put you at above-average risk for ovarian cancer:

• Personal or family history of ovarian, breast, prostate, or colon cancer. Women who no longer have ovaries are still at risk for what is essentially ovarian cancer (primary peritoneal cancer).

• North American or Northern European heritgage and/or Ashkenazi Jewish population..

• Hereditary nonpolyposis colorectal cancer or syndrome.

• Unexplained infertility, no pregnancies, and no history of birth control usage.

• Use of high-does estrogen for long periods without progesterone may be a risk factor.

• Increasing age.

• Living in an industrialized country.

If you would like to receive free information about ovarian cancer (via snail mail) please contact me:

Carolyn Benivegna, President

Southwest Florida Division

National Ovarian Cancer Coalition (NOCC)

6017 Pine Ridge Road, #248

Naples FL 34119-3956

Phone: 941/455-0554


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