National Consensus 2007 (OCNA Statement)

Ovarian Cancer National Alliance Salutes First National Consensus on Ovarian Cancer’s Symptoms

A Statement From Executive Director Sherry Salway Black: The Ovarian Cancer National Alliance salutes the development of the first national consensus statement on ovarian cancer symptoms.

The Alliance has advocated for a consensus statement on symptoms ever since the organization’s founding in 1997. The Alliance was created to advance research through advocacy and increase awareness about symptoms so that women would seek and receive treatment earlier.

Unfortunately, the ovarian cancer survivor community’s insistence about symptoms has long been dismissed by the medical community. We are proud that founders of the Ovarian Cancer National Alliance have been the catalyst for changing this thinking.

In the late 1990s, Dr. Barbara Goff, a gynecologic oncologist at the University of Washington, worked hand-in-hand with one of our co-founders, the late Cindy Melancon, to develop and disseminate a symptoms survey in Cindy’s ovarian cancer survivors’ newsletter.

The results dispelled the myth that ovarian cancer has no symptoms. In fact, most of the survivors surveyed reported symptoms, even in the early stages. That is critical information for women and healthcare practitioners to know because when diagnosed early, nine out of 10 women will survive for more than five years.

Last year, another Alliance co-founder, Pamela Faerber, directly asked national cancer organizations to form a consensus statement – not just in response to our survivors’ insistence, but also to provide consistency in describing symptoms to make it easier for women to learn and remember them. Pam made her request to a group of organizations convened by the Gynecologic Cancer Foundation during the Alliance’s September 2006 conference.

During the conference, participants expressed concern to an American Cancer Society official that ACS did not even have a brochure about ovarian cancer’s symptoms. During our next national conference in Washington, D.C., this July, hundreds of ovarian cancer advocates will be discussing how to make this information more widespread.

The Alliance is the national umbrella organization representing 50 local, state and national ovarian cancer survivor and advocacy groups. We speak for the 172,000 survivors living in the United States. On behalf of all of them, we are pleased that our advocacy as survivors has led to this consensus statement. This will help both women and medical professionals know that symptoms exist, even in the early stages.

It is important to note that ovarian cancer is the deadliest of the gynecologic cancers and ranks fifth in cancer deaths among women. Contrary to popular opinion, a Pap smear does not test for ovarian cancer – it is a screening for cervical cancer. There is no reliable screening test for ovarian cancer, making information and knowledge about symptoms even more critical.

The Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists and the American Cancer Society led the effort to form a consensus statement on ovarian cancer. Their statement follows:

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:

Bloating

Pelvic or abdominal pain

Difficulty eating or feeling full quickly

Urinary symptoms (urgency or frequency)

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 gynecologist. 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.

Statement May/June 2007

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