September 17, 1999

Madelyn DeLeo, of Bristol, R.I., is an advocate for ovarian cancer awareness – she has had the disease twice. DeLeo was first diagnosed in 1979, nearly two years after a gynecologist discovered an ovarian cyst, which supposedly had gone away. She sought consultation from the MGH, but was treated in Rhode Island. She underwent a hysterectomy, chemotherapy and follow-up surgery that put her disease into remission. In 1996, 17 years later, DeLeo felt sick again.

"I felt mild abdominal pain and had pelvic discomfort, but it was nothing that would cause anyone to go running to a doctor," says DeLeo. "Although I had been monitored every six months by my oncologist since 1979, he couldn't find the problem and claimed that there was nothing wrong with me. An MRI and CT scan found nothing, but I knew my body was signaling that something was out of sync," she says.

After several doctors dismissed DeLeo's concerns, her oncologist in Rhode Island finally ordered a CA125 test and called her to come in right away – her CA125 level (a protein that may be found in the blood of ovarian cancer patients) was elevated. Despite her history of ovarian cancer and the fact that she was complaining of ovarian cancer symptoms, this physician was the first to give her a CA125 test. DeLeo found herself with a recurrence of cancer. That is when she decided to return to the MGH for treatment.

"Unfortunately, misdiagnosis is a common story for many women with ovarian cancer," says Michael Seiden, MD, a medical oncologist in the Gillette Center for Women's Cancers at the MGH. "The symptoms of ovarian cancer are vague and so common that they often are ignored. I'm not saying that women should go running to the doctor if they feel bloated or have excessive gas, but if these symptoms go on for months, perhaps they should be taken seriously," says Seiden.

According to Seiden, although ovarian cancer is approximately 80 percent curable when it is found early enough, most women aren't diagnosed until it has spread to their intestines and other areas. "This is what makes ovarian cancer so scary. There aren't any reliable early detection methods right now," he says. Seiden does, however, see a brighter future: "We are doing much better at treating ovarian cancer than we were 30 years ago. There are researchers here at the MGH and at Dana-Farber, among other places, who are working to find better methods for detection and treatment of this disease," he says.

As is common with ovarian cancer, DeLeo's disease wasn't diagnosed early because of her vague symptoms. She is currently undergoing chemotherapy at the MGH.

"My advice to women is to be aggressive with their doctors," says DeLeo. "You know your own body. If something feels foreign, go to a doctor and be persistent until they figure out what is wrong." DeLeo and Seiden also encourage women to be aware of the symptoms that go along with ovarian cancer. Both feel that through education and awareness, women's chances for survival will continue to increase.

In recognition of National Ovarian Cancer Awareness Month, teal-colored ribbons, symbolizing ovarian cancer awareness, are available throughout September at the Gillette Center for Women's Cancers at the MGH, located on Cox 1. For more information about ovarian cancer, visit the Cancer Resource Room located on Cox 1 or call Aimee Harris, at 4-4800.

Symptoms of ovarian cancer

• Vague but persistent gastrointestinal complaints such as gas, nausea and           indigestion
• Frequent or urgent urination
• Unexplained change in bowel habits
• Abnormal postmenopausal bleeding
• Pelvic and/or abdominal swelling and pain; bloating or a feeling of fullness
• Ongoing fatigue
• Pain during intercourse
• Unexplained weight gain or weight loss