Why do most women with ovarian cancer get sub-standard treatment?

By Deborah Kotz, Globe Staff

It’s hard to believe in this age of patient empowerment and instant Internet access to the latest cancer research that most women diagnosed with ovarian cancer are getting sub-standard care, but that’s exactly what a new study found -- and it could be subtracting a year or more from their lives.

While rarer than breast cancer, ovarian cancer kills about 15,000 American women each year because there's no reliable screening test, so the cancer goes undetected until bloating, nausea, and other symptoms develop after the tumor has spread beyond the ovary.

Surgery to remove the cancer often involves removing the ovaries, fallopian tubes, and uterus, and sometimes part of the bowel, while scraping away dozens or hundreds of tiny growths dotting the abdominal cavity and surrounding organs -- known as debulking. In the hands of the wrong surgeon, cancer may remain, potentially shortening a woman’s life.

“A general surgeon who doesn’t see much ovarian cancer may not have the capability to do this procedure,” said Dr. Ursula Matulonis, director of the gynecological oncology program at the Dana-Farber Cancer Institute. A 2006 study conducted by Dana-Farber researchers and others found that ovarian cancer patients were more likely to undergo a debulking procedure if they were operated on by a gynecologic oncologist than a general surgeon and were less likely to die of any cause -- a finding that was confirmed in a 2010 study conducted by California researchers.

The new University of California, Irvine, research study, presented at last Monday’s meeting of the Society of Gynecologic Oncology in Los Angeles, found that only 37 percent of ovarian cancer patients treated from 1999 to 2006 in California received the standard of care that’s recommended in clinical practice guidelines issued by the National Comprehensive Cancer Network, an non-profit alliance group that represents 21 cancer treatment centers.

The study also found that surgeons who treated at least 10 ovarian cancer patients each year and high-volume hospitals with at least 20 ovarian cancer patients annually were more likely to follow these practice guidelines, which are based on the most up to date evidence for maximizing a patient’s survival chances and quality of life.

Providing the optimal form of chemotherapy is as crucial as surgery, yet many community hospitals and private oncology practices, according to the new research finding, have neglected to administer a newer form that’s delivered directly into the abdominal cavity through a port.

“It’s complicated to administer and involves more side effects, which is why it’s mainly available only through academic medical centers,” Matulonis said. Yet, researchers found in 2006 that the treatment regimen, called intraperitoneal or IP therapy, extended the average patient’s life by nearly 16 months over standard chemotherapy treatments delivered through an IV into the blood stream.

“The important message from this new study,” Matulonis stressed, “is that women diagnosed with ovarian cancer should make that two or three hour drive to get to a place with gynecologic oncologists and nurses who live, breathe, and think about these cancers every day.”

That’s what Vicki Schmidt decided to do last summer after a CT scan revealed that her abdominal pain was due to a malignancy that had spread from her ovaries into her pelvis. The 56-year-old nurse originally asked her friend who was a general surgeon to operate on her in Rhode Island until the surgeon reviewed her scans and told her to go to Boston.

She had debulking surgery at Massachusetts General Hospital and finished her four-month course of IP therapy administered at Dana-Farber in January. “We don’t do IP chemo at Newport hospital where I work,” she told me.

Fortunately, Schmidt had the means to travel to Boston repeatedly and her health insurance covered the out-of-state treatment; some patients don’t have those advantages, and Matulonis said oncologists in her practice frequently travel to rural locations throughout the state to perform surgeries in Cape Cod, Milford, or Lowell.

She’s recently established relationships with general oncologists in Maine and New Hampshire to instruct them on administering IP therapy to patients unable to make a four or six hour drive several times a month to get the treatment.

“Oncologists have to be willing to learn this practice,” Matulonis said. “We took the time to really learn how to do this several years ago, but I think others in community settings can as well.”