Some people say the symptoms of ovarian cancer whisper.
Knowing the symptoms and who is at risk may be your best chance of noticing the quiet signs of a disease the American Cancer Society estimates will strike more than 21,000 American women this year, and will kill more than 14,000.
Most patients are diagnosed with late-stage disease because it's easy to miss ovarian cancer symptoms.
They include abdominal swelling, bloating and pain; pelvic pain; feeling full quickly when eating; and frequent urination and urgency. There may also be changes in bowel habits, appetite and body weight, plus fatigue, indigestion and nausea.
Ovarian cancer symptoms are persistent, have lasted for several weeks without relief and they are new, not normal for you. You should be especially vigilant if women in your family have had ovarian cancer or breast cancer.
Dr. Rebecca Sutphen, director of clinical genetics at the Moffitt Cancer Center in Tampa, has been working there for 11 years on two keys to fighting ovarian cancer: better identifying high-risk women and finding a reliable screening test. Now, it takes surgery and a biopsy to get a definitive diagnosis; two-thirds of women who have the surgery don't have cancer.
The CA-125 blood test can detect elevation of a protein that is increased in some women with ovarian cancer. Unfortunately, the test is not always a reliable predictor. It can be elevated by benign conditions. And 20 to 50 percent of women with confirmed ovarian cancer show no elevation in the CA-125 test. Doctors use some combination of ultrasound, a pelvic exam, the CA-125 and identification of symptoms to help decide who needs surgery.
"Right now, we're using whatever tools we have, and they are not good enough. Any improvement on that is going to save lives," says Sutphen, who recently answered questions about new developments in research.
Where is Moffitt in the search for a diagnostic test?
We are part of a worldwide group all looking at different markers that will be effective in predicting ovarian cancer. At Moffitt, it's a unique set of markers in the blood that are lipids, which would be elevated in women with ovarian cancer. All the experts in this field believe it will require a panel or combination of markers to diagnose ovarian cancer early. Right now, we use CA-125. We would add additional markers to that to make the test more accurate. As we add more markers and it gets more accurate, we would then be able to use the test in women in the general population. It will not be the work of one group, but together it will result in the test that we need.
Explain what markers are.
A substance in the blood, like PSA levels for prostate cancer in men, which can be measured and is elevated or increased in your blood when you have ovarian cancer, and it can be detected at an early enough stage that you don't have the symptoms and it's curable.
How are you advancing the research?
Moffitt led an effort to get women to contribute their blood samples. To date, more than 2,200 women have participated in the Tampa Bay Ovarian Cancer Study through the Tampa Bay Ovarian Cancer Coalition. Their samples are also used more broadly in a lot of different kinds of ovarian cancer research. I started the coalition in 1998. First we had to define how commonly a BRCA genetic mutation (which is also associated with breast cancer) contributed to ovarian cancer. In our work, 14 percent of women who had ovarian cancer had a hereditary mutation.
So, with the mutation, you're at high risk?
The BRCA gene is the single largest predictor of ovarian cancer. We're also trying to understand what other genes contribute to developing ovarian cancer. Women who have breast cancer have about a 5 percent risk for ovarian cancer. Being Jewish also puts you at high risk. One in 500 women off the street have the BRCA mutation; in Jewish women it's 1 in 40. If you have breast and ovarian cancer in your family, then the likelihood goes up, too.
What do women most need to know about ovarian cancer?
It doesn't give you an obvious symptom; they are vague. So it's important to be attuned to your own body. It doesn't shout. You have to be listening closely.
Irene Maher can be reached at email@example.com or (813) 226-3416.
Janice Kornfeld, 55, of Clearwater was diagnosed with ovarian cancer two years ago.
"My mother and her sister both died of breast cancer. I thought I would get breast cancer. I didn't know there was a connection with ovarian cancer. It caught me by surprise," she says, explaining she had only one symptom: pelvic pain.
Kornfeld is one of more than 2,200 women participating in the Tampa Bay Ovarian Cancer Study at Moffitt, donating blood and tissue samples. "If I can help anyone with their research to find an early marker, I will, so more women don't have to go through what I have gone through," she says.
After her diagnosis, Kornfeld tested positive for the BRCA genetic mutation associated with ovarian cancer. She has two daughters. Her older daughter, 29, has been tested and does not have the gene. Her 22-year-old daughter, and her son, 26, will eventually be tested; men can carry and pass on the gene.
Women who are being evaluated for suspicion of ovarian cancer can contact their gynecologic oncologist about participation in the study.
Any woman diagnosed with ovarian cancer qualifies for genetic evaluation for BRCA. For more information, go to facingourrisk.org.
You can attend a concert fundraiser for ovarian cancer research at 6:30 p.m. Saturday at the First Baptist Church of St. Petersburg, 1900 Gandy Blvd. "A Night for Romance" will feature the jazz music of ovarian cancer survivor Patricia Nevins, a silent auction and a medical research presentation. Donations accepted; reservations suggested. Call (727) 742-3893 or go to www.ocoonline.com.