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Rethinking the war on brain tumors - JAMA editorial finds treatments too scattershot


Posted on: 02/02/2005

Rethinking the war on brain tumors - JAMA editorial finds treatments too scattershot

Wednesday, February 02, 2005
BY CAROL ANN CAMPBELL
Star-Ledger Staff

Doctors writing in a leading medical journal describe advances in the treatment of brain tumors as "negligible" and call for radical changes in researching the disease, which remains a relentless killer even as other cancers are being successfully treated.

The editorial in today's Journal of the American Medical Association accompanies a study that found quality of care varied widely for adults who had the most common and dangerous brain malignancies, called gliomas, and that outcomes remained even poor for those getting the best of care. The editorial calls for a "paradigm shift" in researching aggressive brain tumors.

"Our cure rates are close to zero," editorial co-author Paul Graham Fisher, a brain tumor specialist at Stanford University, said in an interview from California. "We are not doing a good job. A lot of things we do are borrowed from other parts of oncology: 'Hey, this works for breast cancer, let's try it in brain tumors.' We are behind when compared to the rest of oncology."

The editorial has set off heated discussions among brain tumor patients and their advocates. Some maintain that new studies, such as European research into the drug temozolomide, show promise, and that many patients defy the odds and survive far longer than the statistics suggest. Survival rates vary with different tumors.

"I just returned from a brain tumor conference in Florida and scientists talked about novel approaches. It was much more hopeful," said Nancy Conn-Levin, a health educator who works with brain tumor patients. Conn-Levin was diagnosed with meningioma, a slow-growing tumor, nine years ago.

Others welcomed Fisher's candor and said they hoped the study and editorial would bring more attention to the disease. About 19,000 Americans each year are found to have a brain tumor. It is the second-leading cause of cancer deaths among young adults. The JAMA article said the median time of survival for patients with gliomas, which account for 50 percent to 60 percent of all brain tumors, is 48 weeks to 72 weeks, depending on the type of glioma.

"This confirms a lot of my feelings," Dennis Roth of Mendham said of the JAMA reports. Roth's son, Jeffrey, was 27 when he was diagnosed with a brain tumor; he was 32 when he died 15 months ago. "He had never been sick a day in his life," said his father, who has since become an advocate for better treatments and research.

He said renewed focus should go to cancers with the worst survival rates. "We're funding the cancers where people are doing well," he said. "We should look more at kidney cancer, pancreatic cancer and brain tumors."

Most brain tumors are not detected until they are deep into the brain, and doctors said new detection methods are needed to catch them early.

The study appearing in JAMA was based on a survey by the Glioma Outcomes Project, which enrolled 788 patients at 52 sites.

It found that almost half the patients did not undergo chemotherapy, even though the drugs improve survival. In addition, patients were given anti-epileptic medicine even if they did not have seizures.

Patients at academic centers were more likely to receive chemotherapy and to enroll in clinical trials than patients at community centers, the survey found.

"We need to develop guidelines. What are we doing that everyone feels is right?" said Susan M. Chang, a brain cancer specialist at the University of California at San Francisco who was lead author of the study.

Some doctors said they must battle pessimism among doctors who are not brain cancer specialists.

"There is a lot of nihilism out there -- the sense, 'You are going to die so why bother doing anything?'" said Michael Gruber, medical director of the Brain Tumor Center at Overlook Hospital in Summit. "Patients need a doctor familiar with this."

One of Gruber's patients, Len Morreale of Manchester Township, has one of the most lethal brain tumors, gioblastoma multiforme. Four years after his diagnosis, he is alive and, Morreale says, doing well.

"You are confronted with horrible news. Panic sets in," he said. "But I am a walking miracle."

Gruber said the brain tumor advocacy groups in different parts of the country should join together to create a more powerful lobby.

Some patients are not well enough to become activists; others do not want people to know their diagnosis.

"This is a disease that hits your whole being," said Joseph Landolfi, director of the New Jersey Neurosciences Institute at JFK Medical Center in Edison. "It can affect your speech, focus and memory. We need to get the word out, but some high-profile people don't want to come out and say, 'I have a brain tumor.'"

Advocates said they are becoming more savvy, developing walk-a- thons and other fund-raisers. In May, advocates from New Jersey plan to deliver a book, "Faces of Brain Tumor," to members of Congress.

"We're trying to be more political," said Stan Shrodo, whose son Matthew died of a brain tumor in 1993.

"It's frustrating to us that the strides in other cancers have not been made in brain tumors."

Carol Ann Campbell covers medicine. She may be reached at ccamp bell@starledger.com or (973) 392-4148.


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