When she was 25 years old, Nyrvah Richard was in so much pain she was unable to make it out of a New York City subway train. After repeated visits to her internist when Ann Mason was 49, her doctor told her to go on a diet and exercise more to lose the girth she'd suddenly gained.

Both women had ovarian cancer. None of their doctors knew it.

Ovarian cancer "is very, very difficult to detect. There's no screening for it. There's no 'ovarian gram,'" said Dr. Patricia Modrow of the Depart-ment of Defense Ovarian Cancer Research Program.

Both women had the bloating and weight gain that are symptoms of the disease. But because those symptoms of ovarian cancer -- along with fatigue; pelvic or abdominal pain; gastrointestinal upsets such as gas, nausea and indigestion; and frequent urination -- are present in so many other diseases that a diagnosis of ovarian cancer is often overlooked. The disease is lethal when detected later rather than sooner. According to the American Cancer Society Web site, more than 80 percent of women diagnosed with ovarian cancer are in late stage (stage III or IV). Of those, just 19 percent will live five or more years after the cancer is found.

"It used to be called an older woman's disease because it was thought as you become post menopausal, the risk increases, and about 50 percent of all ovarian cancers found in women are over the age of 63." Modrow said. "But more and more it's being diagnosed in younger women, 20, 30 years old." In fact, Mason knows of one woman who was diagnosed at age 13.

Despite both being diagnosed in stage III, both Richard and Mason beat the odds. This year both will mark 10 years of surviving ovarian cancer. Now advocates for increased awareness and research funding, the women devote countless hours trying to help women defy the America Cancer Society's stats that predict in 2006 that 20,180 women will be diagnosed with ovarian cancer while 15,310 women will die of it.

One way Richard and Mason have made a difference to increase awareness is their participation inthe Defense Department's Ovarian Cancer Research Program. Since 1997, Congress has appropriated $101.7 million in research funding to help the program's researchers, physicians and advocates achieve their vision: eliminating ovarian cancer.

"Our vision is a bold one," said Modrow, the program's manager since 2001. "The program is supporting research in ovarian cancer so patients will be able to manage the disease through targeted treatment, live longer and have a better quality of life. We have to try to do something that is some day achievable, and the scientists and the consumers believe it is."

After seeing breast cancer advocates successfully lobby Congress for more research funding in 1992, ovarian cancer advocates charged Capitol Hill and received $7.5 million in 1997 for the creation of the Department of Defense Ovarian Cancer Research Program.

"I wanted to be active, engaged and talk about symptoms and symptom awareness," said Mason, with the Ovarian and Gynecologic Cancer Coalition of Greater Washington. "I wanted to try and make a difference in other women's lives so they don't have to go through what I went through."

In the DoD program, ovarian cancer survivors, alongside scientists and medical professionals, set the program's goals, review research proposals, vote on which proposals will receive funding, and, most importantly, bring urgency to the need for answers about the disease.

"Sometimes as a scientist at the bench, you can lose sight of what's important," Modrow said. "That's one of the things that many scientists have said about having consumers as part of the process: Consumers give the scientists a reason as to why they do the work and consumers bring a sense of urgency to their research."

For Richard, having a seat at the review process table was expected. After all, her group, Share: Self-Help for Women with Breast or Ovarian Cancer, was one of the original advocacy organizations that teamed up under the umbrella of the Ovarian Cancer National Alliance to lobby for research funding. What surprised her, though, was the other reviewers listened to --and really heard -- her.

"I think the strongest point with the DoD program is that from its inception it has put the survivor on equal footing with the other members of the panel. The prevalent attitude toward survivors in the medical community had been, 'We know what's good for you.' Even active participation in your own care was not something that was encouraged. We're not talking 50 years ago. It's been 10 years for me," she said. "I've seen the changes in the role of advocacy not only in finding funding for research but in changing the attitude within the medical establishment as to the role of the patient in her own care."

Now with another ovarian cancer advocacy group, In My Sister's Care, Richard said the review process is also impressive.

"The medical staff and the scientists really, truly pay attention," Richard said. For example, she said when a protocol was being discussed that would cause a woman to have six additional months of chemotherapy for six more weeks of survivorship, she argued against it. "It may extrapolate into very exciting numbers on paper, but the reality is you're essentially giving up your quality of life for not a real marked difference," she said.

Every year the program's participants decide on the investment strategy for the money it receives. For fiscal year 2006, the program received $10 million. The program tends to fund research proposals that will have the greatest impact on the disease while ensuring research isn't being duplicated elsewhere.

"Our program is very flexible in terms of funding strategy so that based on new information our program can change year to year to meet the needs of the scientific and consumer community," said Dr. Naba Bora, the grants manager for the Ovarian Cancer Research Program for the last four years. "It's a researcher and consumer-driven program. It's about what the patients want and what they feel would be helpful."

Now in its ninth year, the program has made steady progress in understanding the disease, Modrow said.

"The knowledge base for ovarian cancer is immature, to say the least. When this program began, it was literally in its infancy," she said. "We certainly have more information about ovarian cancer than we've had in years, but there is much work to be done."

The program can point to many successes.

Its researchers created the first-ever animal models to study detection and treatment of the disease. It helped historically black colleges and universities break into the field of ovarian cancer research. It funds research into preclinical therapeutics and targeted therapies, some of which are now looking at the use of nanotechnology to kill just the cancer cells and none of the healthy ones like current-day chemotherapy does. And, perhaps most important to many ovarian cancer advocates, its researchers have developed biomarkers, which may lead to tests for early stage diagnosis of ovarian cancer as well as be important in finding treatments for it, Bora said.

"We supported program projects when no other funding agency did," Modrow said. "These projects enabled scientists to move the understanding of ovarian cancer forward."

Ovarian cancer "is not detected early because you have no specific symptoms, but as the cancer develops there are molecules that come into play," she said. "Tests are targeted toward detecting these small changes. By going after those sorts of things, we may be able to make a blood test or urine test that can detect slight changes."

That's exactly what Mason wants to see as a first step because when ovarian cancer is caught early, 95 percent of the women diagnosed will survive well over five years -- a much better survival rate than a late-stage diagnosis.

"I want a diagnostic tool like a blood test for cholesterol. If it's high, you go to the next step, which isn't 15,000 more tests," she said. "We want the test to be selective, specific and reliable enough so a physician will know how to proceed with treatment."

Better chemotherapies, more surgical options and reaching out to underserved populations are also research priorities for the program's advocates. Quality of life during and after treatment is another area they want studied.

"By the time women are diagnosed, they have such an aggressive treatment plan to face -- surgery, chemotherapy, side effects -- that affects them physically, mentally. Some women go through treatment well. There are other women who don't go through it well, so quality of life varies from one patient to another," Bora said. "We have a number of studies looking at the differences."

Throughout its existence the program has made a difference to researchers as well as advocates, Mason said.

"The DoD program is helping change the tone and timbre of the conversations that we have. The research community understands why they're doing what they do. When they want to give up, they remember the faces around the table and they say, 'If she's not giving up, I can't give up,'" she said. "It's a real life-changing experience where consumers come away from these sessions with a whole new appreciation of the hours researchers spend and the talent being used so our sisters and our daughters will have better lives.

Ovarian cancer:

Not a silent killer

"Ovarian cancer is not the silent killer that it has earned the reputation of being. There are symptoms, even though they may be symptoms that can be attributed to other diseases," said Nyrvah Richard, who was diagnosed at age 25. "You are the one who lives in your body. If you can tell that something is not as it was or should be, then you have to be your best advocate and keep pursuing it and keep insisting that somebody use whatever technology is available to get you diagnosed."

Symptoms might include: swelling of the stomach (abdomen) from a buildup of fluid; unusual vaginal bleeding; pelvic pressure; back or leg pain; problems such as frequent gas, bloating, long-term stomach pain, constipation, or indigestion. See a doctor if you have these symptoms.