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Milwaukee Journal Sentinel
(KRT)
MILWAUKEE - Irene Rathermel was busy decorating her home for Christmas in 1999 when she realized she wasn't feeling like her usual self.
She got tired quickly and became winded after climbing the stairs.
A few weeks later, Rathermel noticed bloating in her belly and went in to see her doctor. He immediately ordered an ultrasound.
Rathermel, now 73, was diagnosed with advanced ovarian cancer - stage III - which is difficult to treat.
Though a recent study, in which Rathermel was a participant, found that delivering high-dose chemotherapy directly into the abdomen increases survival among women with advanced disease, doctors say more must be done to get women diagnosed sooner.
According to the American Cancer Society, only 19 percent of all ovarian cancer cases are diagnosed at an early stage.
During surgery at the University of Wisconsin Hospital and Clinics to remove Rathermel's tumors, a small pecan-sized port and catheter were placed into her abdomen, the area where her cancer would likely spread or recur first.
The technique, known as intraperitoneal chemotherapy, was done as part of a national research study to determine whether delivering the drugs into a woman's vein, as well as directly into her abdomen, would improve her chances of survival.
Last month, researchers reported that the combination treatment increased the survival of women with advanced ovarian cancer by 16 months. However, the treatment is hard to tolerate, and many women stopped their abdominal chemotherapy and switched to the standard intravenous method.
During her treatment, Rathermel said she had some abdominal pain when the two liters of chemotherapy drugs were dumped into her stomach area, and that she lost her appetite and dropped more than a few pounds.
She finished her treatment in 2001, but had a recurrence about a year later. She opted for oral chemotherapy.
She's doing well - though she broke her leg in October kicking a soccer ball while on vacation in Europe.
"That's my fun story to tell during all of this," she said.
But despite the overall success of the trial, doctors say another basic question remains: What must be done to get more women diagnosed earlier?
"Unfortunately, the problem with detecting and diagnosing ovarian cancer is not necessarily a patient issue or a physician issue - it's more the nature of the disease itself," said Janet Osborne, director of gynecologic oncology at Froedtert Memorial Lutheran Hospital in Wauwatosa, Wis.
Osborne, also an assistant professor in obstetrics and gynecology at the Medical College of Wisconsin, said many women don't have symptoms until their disease is advanced and that many physicians try to rule out other conditions such as gastrointestinal problems before even considering ovarian cancer.
"You can't make a diagnosis if you don't at least consider it first," Osborne said.
Ovarian cancer is the seventh most common cancer in women.
The Cancer Society estimates that there were more than 22,220 new cases and 16,000 deaths from the disease in 2005.
Unlike other gynecologic cancers, most early ovarian tumors are difficult to find during regular pelvic examinations. In addition, symptoms of ovarian cancer are often non-specific.
For example, early symptoms of the disease include vaginal bleeding, pain in the back and legs, or digestive problems such as gas, bloating, indigestion or long-term stomach pain.
Many women initially are treated for conditions such as irritable bowel syndrome or constipation.
"Precious time is lost for many of these women who have ovarian cancer because they're going through unnecessary tests or they're just told to go home because they're fine," said Julene Fabrizio, president of the National Ovarian Cancer Coalition, who was diagnosed with stage I ovarian cancer about six years ago.
"It's just frustrating," she said. "This is not the fault of the doctor; it's just not an easy disease to diagnose."
A preliminary study involving nearly 30,000 women published in November in the American Journal of Obstetrics and Gynecology found that ovarian screening tools such as the transvaginal ultrasound and testing for a protein biomarker, alone or in combination, can detect ovarian cancer. However, the test could also produce many false-positive results, causing needless surgery, the study concluded.
Cancer antigen 125, or CA-125, is a protein that's found on the surface of many ovarian cancer cells, but it can also be found in other cancers and in small amounts within normal tissue.
The CA-125 test is not currently recommended as a screening test for ovarian cancer. However, it and the ultrasound are sometimes used to monitor women at high risk for ovarian cancer, such as those with a family history of the disease.
"It is useful to monitor CA-125 once a patient has a diagnosis of ovarian cancer," said Ellen Hartenbach, director of gynecologic oncology at the University of Wisconsin Comprehensive Cancer Center in Madison. "Once a patient has a diagnosis of ovarian cancer, then the fluctuation on CA-125 usually corresponds to the course of the disease," she said. "When it is up, the cancer is active, and when it is down the cancer is in remission."
"There is a common public misconception that CA-125 is reliable to detect ovarian cancer and that if doctors would only order the test then more women would be diagnosed earlier, but that is not true," she said.
Cindy Kuszewski, 47, was diagnosed with ovarian cancer in March 2001 after spending more than a year being treated for irritable bowel syndrome.
Her pain and fatigue had gotten so bad that one day she cleaned out her desk at the school where she taught special education.
She was prepared to never be able to care for her own five children. She went to the emergency room thinking she was going to die that day.
Kuszewski was diagnosed with stage IV ovarian cancer and says her CA-125 was more than 1,200 units per milliliter of blood. A normal reading is anything below 35.
"For now, the CA-125 is all we have to work with," said Kuszewski, who has a test each month. "True, it may not be perfect but it does give very useful information that can be used to rule out worst-case scenarios."
"We as patients are not as scarred by false positive results that thankfully lead to a confirmation of good health as we are of life-threatening diseases that are left undiagnosed until it is too late," she said.
Kuszewski has had several surgeries to remove her tumors, as well as abdominal chemotherapy and a stem cell transplant to treat her disease.
She is now deaf in her left ear and has significant hearing loss in her right ear. She also has a weakened immune system and partial numbness in her feet, wrist and hands.
"I've always believed in God, and I've always prayed and gone to church," she said. "But all of this has brought me to my knees. ... Every kiss means something, and I stop what I'm doing to appreciate life because I can't ignore the blessings around me - there is never a bad day."
As researchers continue their efforts to develop better screening tools for ovarian cancer, physicians say it's even more important for women to listen to their bodies and to become advocates for their own health.
Also, once a woman is diagnosed, it's important that she see a gynecologic oncologist to optimize her treatment, Fabrizio said.
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For more information on ovarian cancer:
National Ovarian Cancer Coalition: www.ovarian.org
American Cancer Society: www.cancer.org
For more information on abdominal chemotherapy:
Gynecologic Oncology Group: www.gog.org
National Cancer Institute: www.cancer.gov
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(c) 2006, Milwaukee Journal Sentinel. Distributed by Knight Ridder/Tribune News Service.
