Seeking Support for Research and Early Detection
SLOCA is an awareness organization, but our voices also must be heard on issues. There is growing momentum to provide increased funding for research, education, and early detection and diagnosis. Our help is needed.
First National Consensus on Ovarian Cancer's Symptoms
FOR IMMEDIATE RELEASE Contact: Carole Roper
June 13, 2007 202-331-1332
croper@ovariancancer.org
THE OVARIAN CANCER NATIONAL ALLIANCE’S STATEMENT ON THE FIRST NATIONAL CONSENSUS ON OVARIAN CANCER’S SYMPTOMS
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 May 29, 2007
For Those Fighting Ovarian Cancer
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
Cervical Cancer Vaccine
Representative Sam Page has introduced HB 802, which would mandate the new vaccine in the State of Missouri. Parents can opt their daughter out if they choose, but the most important part is that if you accept the vaccine, the insurance company has to pay for it. Otherwise the $450 vaccine would have to be paid for out of pocket.
FOR IMMEDIATE RELEASE
Contact: Rep. Sam Page
February 7, 2007
Phone: 573-751-9762
Representative Sam Page leads fight against Cervical Cancer
Jefferson City - Today Representative Sam Page, a medical doctor from Creve Coeur, Missouri, filed HB 802, legislation to help stop cervical cancer in women. The legislation would specifically require middle-school aged girls to receive the human papillomavirus (HPV) vaccine, the first of its kind to build immunity against strains of HPV, which lead to at least 70 percent of the approximately 10,000 cervical cancer cases in the United States annually.
“This is an opportunity to prevent cancer in women” said Page, “That isn’t an opportunity we have had very often, and we must take advantage of it.”
The vaccine was approved by the federal government in July 2006. Last Friday Texas became the first state to require the vaccine, and at least 17 states are debating similar legislation.
Under Page’s legislation, parents would be allowed to opt their daughters out for medical or religious reasons, as they can do now for other required vaccines.
Facts about cervical cancer and the vaccine:
- The vaccine blocks infection by common strains of human papillomavirus (HPV) which also causes genital warts, and is the most common sexually transmitted disease in the country. The American Cancer Society estimates there were 9,710 new cases of cervical cancer in the United States in 2006 and the Food and Drug Administration reports it kills about 3,700 Americans a year.
- Worldwide, cervical cancer is the No. 2 cancer in women, causing over 470,000 new cases and 233,000 deaths a year. In Missouri, the 1996-2000 Surveillance, Epidemiology and End Results (SEER) program reports that the incidence rate of cervical cancer in African-American women in Missouri (15.7 per 100,000) is nearly double the rate for white women (9.8 per 100,000). Death rates from the same SEER program report among African-American women (5.7 per 100,000) are more than two times higher than among white women (2.5 per 100,000).
-The vaccine is only effective if administered before infection; the Centers for Disease Control and Prevention (CDC) recommends the vaccination for females ages 11 to 26. The vaccine is not effective in men, who can get cancer from other strains of HPV.
Won't you please be a part of this and forward it to your friends. Thank you.
Johanna's Law
We want to get the word out about Johanna’s Law! We encourage you to send the following letter – or a variation of it -- to the editor of your local newspaper. You just need to fill in the name of your organization in the body of the letter as well as provide your name, title and organization at the signature line.
If you want to try to get a news story about Johanna’s Law in your local media, you may want to use the “news hook” of the new ovarian cancer symptoms study. The Alliance provided expert commentary to accompany a peer-reviewed article published in the January 15, 2007 issue of Cancer, the international journal of the American Cancer Society. The study, led by Barbara A. Goff, M.D., proposes that early ovarian cancer may be distinguished from other causes by a specific set of symptoms with a set frequency and duration. The article states that a symptom survey could potentially provide clinicians with a quick, cost-effective tool to detect early-stage ovarian cancer.
Click the link to download a PDF file of the study: Goff Study.
Click the link to download a PDF of the article: Salway Black Editorial.
Good luck!
Carole Roper
Director of Communications
Ovarian Cancer National Alliance
Here is the letter to the editor:
On January 12, President Bush signed an important bill that will literally save women’s lives. Called Johanna’s Law, it authorizes implementation of a major federal campaign to educate American women and health professionals about the signs and symptoms of ovarian and other gynecologic cancers. The campaign would help women recognize potentially dangerous symptoms and seek earlier medical attention from health professionals who would know how to detect the disease earlier.
Our organization, [NAME OF YOUR ORGANIZATION], extends our sincere appreciation to our Congressional delegation for their leadership in securing unanimous passage of Johanna’s Law in both houses of Congress. However, there is one more step in making this a reality. Because Johanna’s Law is an authorizing measure, Congress will now need to appropriate the necessary funding -- so we will again be looking to our Congressional delegation to champion this cause.
Ovarian cancer is the top killer of all the gynecologic cancers. Because there is no reliable screening test for ovarian cancer, fewer than one in five women will be diagnosed in the early stages. This campaign will help in earlier diagnosis, when prognosis is good, thus sparing women and their families from the suffering and heartache that accompanies a late-stage cancer diagnosis.
Ovarian cancer’s symptoms can include abdominal bloating or discomfort, increased abdominal size or clothes fitting tighter around a woman’s waist, an increased or urgent need to urinate and pelvic pain. A woman should see her doctor if she experiences any or a combination of these symptoms for a period of three or more weeks.
Thank you for sharing this vital information with your readers.
Sincerely,
[YOUR NAME, TITLE AND ORGANIZATION]
Your help is needed. It will make a difference.
Be an informed advocate. See our Why Advocate page and the Advocacy Information and Resources
Ovarian cancer is very treatable when detected early.