Alarm over widespread flaws in ovarian cancer treatment

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 alone.

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.

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, NJ, 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 centre. “They took the reins out of my hands,” Mason said. She wound up having a long, complicated 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 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.

Getting guidline

“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 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.”
A patient advocacy group, the Ovarian Cancer National Alliance, urges women with the disease to seek care from gynecologic oncologists; their availability is one the group’s 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 they do not, Goff said.

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 per cent 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 per cent survived at least five years if their care met the guidelines, compared with 25 per cent of those whose care fell short.

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.