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THE OVARIAN CANCER NATIONAL ALLIANCE’S STATEMENT

ON THE FIRST NATIONAL CONSENSUS

ON OVARIAN CANCER’S SYMPTOMS

Press Release dated June 13, 2007

The Ovarian Cancer National Alliance has issued the following statement concerning the first national consensus on ovarian cancer symptoms that was released today. This statement is 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.

OVARIAN CANCER SYMPTOMS CONSENSUS STATEMENT

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.1,2 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.3 Several studies show that even early stage ovarian cancer can produce these symptoms.2-6

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.2-5 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.1

References

1. 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. Level II-2

2. Olson SH, Mignone L, Nakaraseive C, Caputo TA, Barakat RR, Harlap S. Symptoms of ovarian cancer. Obstet Gynecol 2001;98:212-7. Level II-2

3. Goff BA, Mandel L, Muntz HG, Melancon CH. Ovarian carcinoma diagnosis: results of a national ovarian cancer survey. Cancer 2000;89:2068-75. Level III

4. Vine MF, Ness RB, Calingaert B, Schildkraut JM, Berchuck A. Types and duration of symptoms prior to diagnosis of invasive or borderline ovarian tumor. Gynecol Oncol 2001;83:466-71. Level III

Originating Organizations: Date

Gynecologic Cancer Foundation January 23, 2007

Society of Gynecologic Oncologists February 15, 2007

American Cancer Society April 30, 2007

Endorsing Organizations:

CancerCare May 29, 2007

Conversations! The International Newsletter For Those Fighting Ovarian Cancer May 29, 2007

EyesOnThePrize.org June 1, 2007

FORCE: Facing Our Risk of Cancer Empowered May 29, 2007

Gilda’s Club Worldwide May 29, 2007

Gynecologic Oncology Group May 29, 2007

In My Sister’s Care June 5, 2007

International Gynecologic Cancer Society May 30, 2007

Lynn Cohen Foundation for Ovarian Cancer Research June 4, 2007

National Coalition for Cancer Survivorship June 5, 2007

National Cervical Cancer Coalition May 30, 2007

National Ovarian Cancer Coalition May 31, 2007

Ovarian Cancer Canada June 4, 3007

Ovarian Cancer National Alliance May 29, 2007

Ovarian Cancer Research Fund May 29, 2007

SHARE: Self-help for Women with Breast or Ovarian Cancer June 5, 2007

Society of Gynecologic Nurse Oncologists May 29, 2007

President Bush Signs "Johnanna's Law" to Launch a National Gynecologic Awareness Campaign!

President Bush has signed Johanna’s Law, landmark legislation that authorizes development of a national gynecologic cancer awareness campaign. The federal campaign would educate American women and health professionals about the signs and symptoms of ovarian and other gynecologic cancers.

The President signed the bill on Friday, January 12. Both houses of Congress unanimously approved Johanna’s Law: the Gynecologic Cancer Education and Awareness Act late last year.

Johanna’s Law authorizes $16.5 million over a three-year period to the U.S. Department of Health and Human Services for the awareness and education campaign. It is named for Johanna Silver Gordon, who died from ovarian cancer in 2000.

“This achievement is the result of the tireless work and dedication of all of our Congressional champions, the Society of Gynecologic Oncologists, and a far-reaching alliance of grassroots activists whose lives have been touched by gynecologic cancers,” said Sherry Salway Black, executive director of the Ovarian Cancer National Alliance. “The ovarian cancer community in particular has played a critical role in the passage of Johanna’s Law through the Ovarian Cancer Action Network.”

“This is an exciting development in our efforts to save women’s lives through earlier detection of ovarian cancer,” said Johanna’s sister, Sheryl Silver, who conceived Johanna’s Law and has worked tirelessly for its passage. “By educating the public about the risk factors and symptoms of gynecologic cancers, Johanna’s Law will help women recognize potentially dangerous symptoms and seek appropriate medical attention sooner.”

OCAN and other advocates now have another hurdle to overcome. Because Johanna’s Law is an authorizing measure, it does not include any appropriations, so OCAN and other advocates will need to work to urge Congressional funding for the campaign.

Release provided by Ovarian Cancer National Alliance, January 12, 2007.