St. Petersburg philanthropist Celma Mastry first knew something was wrong when she could no longer button her ball gowns.
Even with two ultrasounds, a urological procedure, various doctor visits and several months, nobody found the problem.
It wasn't until Mrs. Mastry's son, Micheal, came home from living in Australia that Celma Mastry got an answer. After hearing his mother's symptoms and the search for a problem, Mastry, an ob/gynecologist, did an ultrasound himself.
He didn't want to tell her what he saw.
By then, it was too late. Celma Mastry had ovarian cancer so advanced that it had spread through her lungs and abdomen. Treatment would be a matter of prolonging her life, not saving it.
She died in January, nearly three years after her cancer was found. Her eight children set up a foundation in honor of the woman who did so much volunteer work that a few years before, she had been recognized with a civic award. She was named the Queen of Hearts.
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There is a reason ovarian cancer is so deadly. Just as Celma Mastry discovered, there is no good way to find it until it is too late.
Breast cancer has the mammogram.
Cervical cancer has the Pap smear.
"Imagine if we had such a screening tool for ovarian cancer," Micheal Mastry told his audience Monday, nearly 100 people who gathered at a local hospital to learn more about ovarian cancer at the first such forum sponsored by the Celma Mastry Ovarian Cancer Foundation.
But ovarian cancer doesn't have a screening tool.
It also has symptoms that are so vague, such as bloating or fatigue, that women may dismiss them. When they do seek treatment, doctors often look for digestive problems instead.
The result: 70 percent of ovarian cancers are diagnosed after they have spread into the abdomen.
It is this fact, that the cancer could be far less lethal if only it could be found in time, that has prompted intense interest in research to find better tools. The past several months have brought a flurry of news on potential screening tests, including one being studied at the H. Lee Moffitt Cancer Center & Research Institute in Tampa.
"Ovarian cancer is the silent killer," said Dr. James LaPolla, director of gynecologic oncology for the residency program at Bayfront Medical Center. "It carries a poor prognosis because it's usually diagnosed when it's too late."
LaPolla is part of a group of scientists working around the country to find women at high risk for ovarian cancer and track them over time, giving them blood tests and ultrasounds, searching for clues that show early cancer.
The Mastry foundation is helping fund LaPolla's research in St. Petersburg. The study will make it easier for local women with a family history of cancer to find out whether they carry genes that make their risk even higher.
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Finding a screening test isn't as simple as it might seem. To be effective, the test must be accurate and relatively cheap. It can't miss cancers, but it also can't deliver too many false positives _ scaring people into tests or even surgeries for cancers they don't have. And it has to pick up cancer early.
"If we can't catch it in stage one, there's no point," said gynecologic oncologist Dr. Sean S. Tedjarati, international cancer liaison at Moffitt and assistant professor at the University of South Florida. "It has to catch it at a time when intervention is going to make a difference."
But the right intervention can make a difference. Cervical cancer deaths have dropped 90 percent because of the Pap smear, he said.
"The Pap smear is the most effective medical tool ever developed, from the perspective of fighting disease," Tedjarati said.
The ovarian test that is most often used now is a blood test that measures the level of a substance called CA-125. It rises in women with ovarian cancer. But the test isn't a good one for the general population. Some women get elevated levels of CA-125 for other reasons, while others don't develop high CA-125 until they have advanced cancer. It's now used most often for women who are at high risk, or to track whether women who already have the disease are responding to treatment.
Ultrasound also is used to find ovarian cancer. But it often doesn't show cancer until the tumors are large.
Scientists are studying different types of blood tests. One of the most promising techniques uses computer analysis to identify certain patterns of proteins found in the blood of women with ovarian cancer. News reports earlier this year said one such test, OvaCheck, designed as a test for women at higher-risk of ovarian cancer, would be put on the market this spring.
Since then, a prominent group of doctors said the test required more study. Then the FDA said it had the authority to regulate the test, and company officials say they now don't have a date for when it will be available.
At Moffitt, scientists are researching another blood marker, lysophosphatidic acid, or LPA. Moffitt published a study in July, finding that LPA blood levels identified which women in the study had ovarian cancer 93 percent of the time. LaPolla was among those working on the study.
Even though Tedjarati thinks all the research is promising, he believes it will be years before a screening test become a standard for care.
"It's at least about 10 years before we have a really good screening test," he said. "Hopefully it will be earlier."
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Celma Mastry was 73 when she was diagnosed, but she looked and lived younger. She was active in more charities _ the Florida Orchestra Guild, the All Children's Hospital Guild, the Boys and Girls Club, and the Pinellas Association for Retarded Children were just a few _ than her children could remember. She did aerobics. She read to hospital patients.
She had her contradictions.
"She's having somebody to fly in from Atlanta to custom make a gown," Mastry said, "then she'd rush off to a trailer park to iron a lady's clothes."
She made it hard to say no.
"She'd come up with a smile, and say, "I'm sure you're going to help,' " he said.
Once her cancer was diagnosed, Celma's children threw themselves into her care. Two of them went with her to every doctor's visit, every procedure, every hospital visit. They brought nurses in to her whenever possible.
"She made us promise she would not go to the hospital," at least not overnight, said daughter Julie M. Janssen, principal of St. Petersburg High School.
Micheal Mastry arranged for her to get drug treatments at the legendary University of Texas M.D. Anderson Cancer Center.
The good care helped. Doctors initially estimated she would live six to 18 months after her diagnosis. She made it almost three years.
She realized she was fortunate _ at least more so than many other cancer victims, Janssen said.
"Mom was pretty adamant about helping women who were going through what we were," she said.
So far, the foundation has raised about $200,000 and distributed $60,000 to $70,000. The Mastry children have four goals: to fund research, provide financial help to needy patients, educate the community about the disease and to help develop tools for early detection and prevention.
Years ago, when Micheal Mastry was training to become an ob/gyn, he and his fellow residents always said ovarian cancer was the disease they hoped their family members would never get. It was a horrible death, they would say.
Then there was the grisly joke when biopsy results came back.
"Of course it's malignant," they would say. "She's a nice lady."
Mastry stopped and stared into the distance last week after he told the story.
"Ovarian cancer takes all the great women," he said.
Current tests that look for ovarian cancer have limitations. Researchers are trying to find a better way to find ovarian cancers early. Here are some of the options:
PELVIC EXAM: Pelvic exams can find some gynecologic cancers early, but it's usually difficult to find ovarian cancer this way unless it is advanced.
CA-125: This test looks for elevated levels of a substance called CA-125 in a woman's blood. But levels can be high for other reasons. Researchers are looking to see if CA-125 can be combined with other tests to make it more reliable.
TRANSVAGINAL ULTRASOUND: Ultrasound scans can find a mass in the ovaries, but often can't spot whether it is malignant or find it early.
PROTEOMICS: Doctors are using sophisticated computers to see if specific patterns of proteins in a woman's blood could be an early sign of cancer.
LPA: Researchers at H. Lee Moffitt Cancer Center & Research Institute in Tampa and elsewhere are working to see if this substance in the blood could be used as a test.
Sources: National Cancer Institute, American Cancer Society, H. Lee Moffitt Cancer Center & Research Institute
The death rate for ovarian cancer is high because there are no clear symptoms for doctors to diagnose the disease early.
Estimated for 2004:
New cases: 25,580
5th most common cancer in women.
4th leading cancer death in women.
Half of all ovarian cancers are found in women over age 65. Death rate Per 100,000 U. S. women over age 65
Part of reproductive system; each the size of an almond.
Over age 50.
Close relative with ovarian cancer.
Had breast cancer.
Early onset of periods; menopause after 50; no children or had children after age 30.
Estrogen replacement therapy for more than 10 years.
Source: American Cancer Society, National Cancer Institute ( U. S.)