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Ovarian Cancer Whispers; New Registry Will Listen

By collecting genetic and family information from women with ovarian cancer, OHSU researcher hopes to detect genetic markers for the disease

Many call ovarian cancer a "silent killer." The cancer does not have a dedicated screening tool such as mammograms, which are used to detect breast cancer. Ovarian cancer doesn't make a grand entrance - often, women notice no symptoms until the cancer is difficult to treat.

 Tanja Pejovic, M.D., Ph.D., associate professor of obstetrics and gynecology in the Oregon Health & Science University School of Medicine, disagrees. "I think that calling it 'silent' implies that we should not be doing our part to detect this disease. The newer motto of 'it whispers, so listen' is more accurate," she says. "The symptoms for ovarian cancer are vague and generalized, but we must maintain a level of suspicion for this disease in the setting of these symptoms - particularly if the symptoms don't respond. We are doing a disservice to women if we call it a silent killer and take away the possibility of early detection and diagnosis." 

Pejovic and other researchers in the OHSU Center for Women's Health and the OHSU Cancer Institute are now working to decode the quiet whisperings of ovarian cancer by collecting genetic and family information related to the disease in the recently established Oregon Ovarian Cancer Registry (OOCR). The OOCR is the first such registry in Oregon and is one of few in the nation. OHSU also has registries for colorectal and pancreatic cancers.

Although based in Oregon, the OOCR will accept information from any person who qualifies, regardless of residence. In order to enroll in the registry, a person must be a member of a family with at least two individual occurrences of ovarian cancer and fill out a questionnaire about their family history. The registry will also accept tissue and blood samples from some registrants.

OHSU researchers, led by Pejovic, will then pore over the collected genetic material and family information, searching for clues about the emergence of ovarian cancer, and looking for ways to earlier detect its presence. Recent research has identified the BRCA genes - genes that are also linked to breast cancer - as an indicator of risk for ovarian cancer, but evidence seems to suggest that additional markers exist. Early detection of ovarian cancer often leads to a better prognosis for the course of the disease.

According to Pejovic, the registry will also be used to identify women who are at high risk of developing ovarian cancer and guiding those women to genetic counseling, as appropriate. Pejovic also envisions the registry as a resource for Oregon clinicians - for instance, a provider could speak with registry staff about appropriate management and referral options for a patient at risk for ovarian cancer.

 The registry will require the assistance of many women living with ovarian cancer - including women like Marsha Schulz, 65, one of Pejovic's patients.

Like many women who contract ovarian cancer, Schulz of Madras, Ore., didn't notice any symptoms of the disease before her diagnosis. "I felt great. I had been working out, just lost 60 pounds. I thought I was in good shape," she said.

Still feeling fit, in March 2005 Schulz, a special education assistant teacher at Madras High School, went in for her annual pelvic exam. "My doctor felt a mass," she recalled. "They sent me over to get an MRI and that confirmed it - next thing I knew, my doctor sent me up to OHSU." Schulz was diagnosed with stage III ovarian cancer.

Schulz, now 65, underwent chemotherapy and surgery at OHSU to remove the tumor, her ovaries and other affected organs, including her spleen and parts of her bowels. Her CA-125 count (a blood-test indicator of cancer cells in the body) plummeted, and doctors felt confident that all of the cancer had been removed.

But, three years later, her regular blood tests again showed elevated levels of CA-125. A CT scan confirmed it: the cancer was back, this time attaching itself to Schulz's bladder. She is currently undergoing chemotherapy to cut the size of the cancer.

Schulz, whose mother and grandmother had ovarian cancer, will be contributing her genetic samples and family health information to the Oregon Ovarian Cancer Registry. She hopes that Pejovic and other OHSU researchers will be able to discover reliable and affordable ways to screen for proclivity to ovarian cancers.

"If I had known about a test for this, I would have done it," Schulz said. "I'm giving my information because I'm hoping my great-great-granddaughter will be able to just look up her family history, and know her risk."

Pejovic hopes to enroll at least 1,000 families in the registry. For more information about the registry, including details on how to register, call 503 418-4522.

About the OHSU Center for Women's Health
On a day-to-day basis, the OHSU Center for Women's Health is fundamentally changing the health care experience for women by bringing together outstanding clinical care, cutting-edge research and innovative patient and community education in one vibrant location.

The center has been awarded the designation as a National Center of Excellence for women's health by the U.S. Department of Health and Human Services. It is one of only 21 institutions in the country to earn this distinction, and the only institution in the Northwest.

About the OHSU Cancer Institute
The OHSU Cancer Institute is the only National Cancer Institute-designated center between Sacramento and Seattle. It comprises some 200 clinical researchers, basic scientists and population scientists who work together to translate scientific discoveries into longer and better lives for Oregon's cancer patients. In the lab, basic scientists examine cancer cells and normal cells to uncover molecular abnormalities that cause the disease. This basic science informs more than 300 clinical trials conducted at the OHSU Cancer Institute.

About OHSU
Oregon Health & Science University is the state's only health and research university, and only academic health center. As Portland's largest employer and the fourth largest in Oregon (excluding government), OHSU's size contributes to its ability to provide many services and community support activities not found anywhere else in the state. It serves more than 184,000 patients, and is a conduit for learning for more than 3,900 students and trainees. OHSU is the source of more than 200 community outreach programs that bring health and education services to each county in the state.

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