Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Drea Thew
Women who carry a BRCA1 or BRCA2 mutation have a much higher lifetime risk of ovarian cancer than the general population. Ovarian cancer is the deadliest reproductive cancer, because it is typically diagnosed at an advanced stage when treatment is difficult. It has been called the “silent killer” because symptoms were thought to be non-existent, or so mild and vague that they progressed undetected until it was too late. However, research shows that ovarian cancer is not necessarily silent—women often do experience symptoms. But they don’t always act on them. The first national consensus statement on ovarian cancer symptoms should help to change that.
The Gynecologic Cancer Foundation led the effort to formulate the following consensus statement, supported by the Society of Gynecologic Oncologists, the American Cancer Society, FORCE, the National Ovarian Cancer Coalition, the Ovarian Cancer National Alliance, and many other cancer organizations:
Historically ovarian cancer was called the “silent killer” because symptoms were not thought to develop until the chance of cure was poor. However, recent studies have shown this term is untrue and that the following symptoms are much more likely to occur in women with ovarian cancer than women in the general population. These symptoms include:
Women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early stage ovarian cancer can produce these symptoms. Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecol- ogist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early-stage diagnosis is associated with an improved prognosis. Several other symptoms have been commonly reported by women with ovarian cancer. These symptoms include fatigue, indigestion, back pain, pain with intercourse, constipation and menstrual irregularities. However, these other symptoms are not as useful in identifying ovarian cancer because they are also found in equal frequency in women in the general population who do not have ovarian cancer.
“We know that when women are diagnosed in Stage I of the disease, it is 90% curable. Unfortunately, until now there has been no agreement on common symptoms,” said Dr. Barbara Goff, a gynecologic oncologist at the University of Washington who has conducted research on ovarian cancer detection. “This agreement on common symptoms of ovarian cancer hopefully will lead to earlier diagnosis when a cure is more likely.” This simple, concise and consistent statement should lead to increased awareness, among women and the medical community, which in turn should save lives.
The National Comprehensive Cancer Network (www.nccn.org) is a consortium of cancer centers with experts in management of hereditary cancer. Each year, the NCCN updates its risk management guidelines for people with hereditary risk for cancer, based on the latest research. Currently NCCN recommends prophylactic bilateral salpingo oophorectomy (removal of the ovaries and fallopian tubes) for BRCA carriers between the ages of 35 and 40 or after completion of child-bearing.
For women with BRCA mutations who choose not to have oophorectomy, NCCN recommends concurrent transvaginal ultrasound and CA-125 every six months starting at age 35 or between five and 10 years earlier than the earliest age of first diagnosis in the family; preferably during the first 10 days of the menstrual cycle for premenopausal women. In addition to these guidelines, all women should have a pelvic exam at least yearly.
Goff BA, Mandel L, Drescher CW, Urban N, Gough S, Schurman K, Patras J. Mahony BS, Anderson M. Development of an ovarian cancer symptom index. Cancer 2007; 109:221-7.
Goff BA, Mandel LS, Melancon CH, Muntz HG. Frequency of symptoms of ovarian cancer in women presenting to primary care. JAMA 2004; 291:2705-12.