Most women with ovarian cancer receive inadequate care and miss out on treatments that could add a year or more to their lives, a new study has found.
The results highlight what many experts say is a neglected problem: widespread, persistent flaws in the care of women with this disease, which kills 15,000 a year in the United States. About 22,000 new cases are diagnosed annually, most of them discovered at an advanced stage and needing aggressive treatment. Worldwide, there are about 200,000 new cases a year.
Cancer specialists around the country say the main reason for the poor care is that most women are treated by doctors and hospitals that see few cases of the disease and lack expertise in the complex surgery and chemotherapy that can prolong life.
“If we could just make sure that women get to the people who are trained to take care of them, the impact would be much greater than that of any new chemotherapy drug or biological agent,” said Dr. Robert E. Bristow, the director of gynecologic oncology at the University of California, Irvine, and lead author of the new study presented on Monday at a meeting of the Society of Gynecologic Oncology in Los Angeles.
The study found that only a little more than a third of patients received the best possible care, confirming a troubling pattern that other studies have also documented.
Karen Mason, 61, from Pitman, N.J., had been a nurse for 28 years when she was found to have ovarian cancer in 2001. She scheduled surgery with her gynecologist, who was not a cancer surgeon.
But her sisters would not allow it. They had gone on the Internet, and became convinced — rightly, according to experts — that she should go to a major cancer center.
“They took the reins out of my hands,” Ms. Mason said.
She wound up having a long, complicated and successful operation performed by a gynecologic oncologist, which she does not believe her gynecologist could have done.
Dr. Barbara A. Goff, a professor of gynecologic oncology at the University of Washington, in Seattle, who was not part of Dr. Bristow’s study, said the problem with ovarian cancer care was clear: “We’re not making the most use of things that we know work well.”
What works best is meticulous, extensive surgery and aggressive chemotherapy. Ovarian cancer spreads inside the abdomen, and studies have shown that survival improves if women have surgery called debulking, to remove all visible traces of the disease. Taking out as much cancer as possible gives the drugs a better chance of killing whatever is left. The surgery may involve removing the spleen, parts of the intestine, stomach and other organs, as well as the reproductive system.
The operations should be done by gynecologic oncologists, said Dr. Deborah Armstrong of Johns Hopkins University, who is not a surgeon. But many women, she said, are operated on by general surgeons and gynecologists.
Some women prefer the obstetricians who delivered their children. Many are desperate to start treatment and think there is no time to find a specialist. Some do not know that gynecologic oncologists exist. Some inexperienced doctors may find the cancer unexpectedly during surgery and try to remove it, but not do a thorough job.
“If this was breast cancer, and two-thirds of women were not getting guideline care that improves survival, you know what kind of hue and cry there would be,” said Dr. Armstrong, who was not involved in the study. But in ovarian cancer, she said: “There’s not as big an advocacy community. The women are a little older, sicker and less prone to be activists.”
One patient advocacy group, the Ovarian Cancer National Alliance, ranks the availability of a gynecologic oncologist as one of its criteria in comparing the quality of care among states.
Surgeons who lack expertise in ovarian cancer should refer women to specialists if the women are suspected to have the disease, but often do not, Dr. Goff said.
Dr. Bristow’s research, which has been submitted to a medical journal but not yet published, was based on the medical records of 13,321 women with ovarian cancer diagnosed from 1999 to 2006 in California. They had the most common type, called epithelial. Only 37 percent received treatment that adhered to guidelines set by the National Comprehensive Cancer Network, an alliance of 21 major cancer centers with expert panels that analyze research and recommend treatments. The guidelines for ovarian cancer specify surgical procedures and chemotherapy, depending on the stage of the disease.
Surgeons who operated on 10 or more women a year for ovarian cancer, and hospitals that treated 20 or more a year, were more likely to stick to the guidelines, the study found. And their patients lived longer. Among women with advanced disease — the stage at which ovarian cancer is usually first found — 35 percent survived at least five years if their care met the guidelines, compared with 25 percent of those whose care fell short.
But most of the women in the study, more than 80 percent, were treated by what the researchers called “low-volume” providers — surgeons with 10 or fewer cases a year, and hospitals with 20 or fewer.
Dr. Bristow said women should ask surgeons how often they operate on women with ovarian cancer and how often they achieve complete debulking. But he also acknowledged that many patients hesitate to ask for fear of offending the doctor who may operate on them.
Ovarian cancer has unusual traits that make it more treatable than some other cancers. It is less likely to spread through the bloodstream and lymph system to distant organs like the lungs and brain. The tumors do spread, but usually within the abdomen and pelvis, where they tend to coat other organs but not eat into them and destroy them, said Dr. Matthew A. Powell, a gynecologic oncologist and associate professor at Washington University School of Medicine in St. Louis.
And most ovarian cancers are extremely sensitive to chemotherapy, experts said.
In 2006, a study was published that many doctors thought would change the field forever. It compared standard intravenous chemotherapy with a regimen that pumped the drugs directly into the abdomen. The test regimen was highly toxic, and not all patients could tolerate it. But median survival on it was 65.6 months, compared with 49.7 months on the standard treatment — a survival difference of 15.9 months.
The gain was huge, almost unheard of. New cancer drugs are often approved if they buy patients just a few months. The test treatment — called intraperitoneal, or IP therapy — did not even use new drugs. It just gave the old ones in a different way. Several previous studies had had similar findings for IP therapy, but the 2006 study, led by Dr. Armstrong, had the most definitive results.
The National Cancer Institute took a rare step, one it reserves for major advances. It issued a “clinical announcement” to encourage doctors to use the IP treatment, and to urge patients to ask about it. Cancer specialists predicted that the announcement would lead to widespread changes in treatment. Expert guidelines said it should be offered to every patient considered strong enough to endure it.
Seven years later, Dr. Armstrong and other physicians said, IP therapy still has not caught on.
Part of the reason may involve money, Dr. Armstrong said. With IP chemotherapy, patients also need a lot of intravenous fluids, which means unusually long treatment sessions. Oncologists are paid for treatments, not for time, so for those in private practice, long sessions can eat away at income.
“You don’t make a lot of money with somebody in the chair getting IV fluids,” Dr. Armstrong said. “Chair time is money. I’m being a cynic here, but I think that is part of the issue.”
Dr. Goff said: “Where I live, in the Pacific Northwest, IP chemotherapy is pretty much only being done in the major medical centers, and by very few private-practice oncologists. Many say it’s too difficult, and they don’t even offer it to patients, which I think is unethical.”
Ms. Mason had six hours of surgery at the Fox Chase Cancer Center in Philadelphia, with a gynecologic oncologist. The cancer had spread to lymph nodes, and was Stage 3. The surgeon removed her ovaries, fallopian tubes, various lymph nodes, uterus, cervix and omentum (part of the tissue that lines the inside of the abdomen).
“Ovarian cancer looks like Rice Krispies all over the place,” Ms. Mason said. “She spent most of the time picking out each little visible Rice Krispy, and left nothing behind that she could see with her naked eye.”
Then, Ms. Mason had chemotherapy (not IP, because it was not being done at the time). The disease has not recurred. Had she stuck with the first doctor, she believes, “I would be gone.”
“I feel so strongly about letting women know that you need to get to a center of excellence,” Ms. Mason said. “It’s shocking to think it’s still not happening.
This article, “ ” first appeared in The New York Times.