updated 2/1/2005 6:24:06 PM ET 2005-02-01T23:24:06

Brain cancer in adults is a dreaded diagnosis with few established treatment guidelines, resulting in wide variations in care that can make things even worse for some patients, a study suggests.

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Nearly half of patients surveyed received no chemotherapy despite evidence that it can boost survival. Anti-seizure drugs were widely used even though most patients did not have seizures. And while depression is common in people with brain cancer, more than 90 percent said they never were given antidepressants.

While there might have been valid reasons for the treatment choices, the wide variation suggests some patients are not getting appropriate care, said lead author Dr. Susan Chang, a brain cancer specialist at the University of California at San Francisco.

“We have a lot of work to do,” she said.

Sobering survey
The findings stem from a survey of 788 adult brain cancer patients at 52 centers throughout the United States and Canada. The results appear in Wednesday’s Journal of the American Medical Association.

The survey serves as a report card on the care of newly diagnosed patients, and “unfortunately, the grades are sobering,” according to a JAMA editorial.

The study underscores a troubling, pervasive problem in brain cancer: Patients get shortchanged, said Stanford University brain tumor specialist Dr. Paul Fisher, co-author of the editorial. Many view brain cancer as a hopeless disease, and as a result, there is too little research into causes, risk factors and treatments, he said.

“Talk to most oncologists and you say brain tumor, and they just say, ’Ugh,”’ Fisher said.

The study involved patients with advanced malignant gliomas, a type of brain cancer diagnosed in about 9,000 U.S. patients each year. Average survival rates range from less than a year for more advanced gliomas to about five years for less advanced forms.

Most glioma patients are diagnosed when the tumor is already large and root-like, infiltrating deeply into brain tissue and making complete surgical removal nearly impossible, Chang said.

Treatment typically involves a combination of surgery and radiation, but high-grade gliomas generally are considered incurable. Chemotherapy has shown modest benefits, Chang said.

Not always hopeless
Kyla Nagel of Eugene, Ore., was diagnosed with an aggressive glioma three years ago after a seizure. Doctors in Oregon told her there was nothing they could do.

“I went from being a healthy 23-year-old to all of a sudden you have cancer. I was given one year to live,” said Nagel, who worried most about her then 1½-year-old daughter.

She underwent conventional treatment, including intravenous chemotherapy, but her cancer returned and she eventually enrolled in a UCSF research regimen using an experimental drug that was injected through a catheter directly into her tumor.

Nagel’s outcome was not typical — three years later her brain scans show no signs of cancer.

Her case shows that brain cancer is not always hopeless, and it underscores the need for more research, Chang said.

European research released last year, after Chang’s study ended, showed improved survival rates for patients on a newer pill, temozolomide, when used with radiation — promising results that might change treatment practices, the JAMA study authors said.

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