Nearly two decades after federal guidelines called for more aggressive treatment of pain associated with cancer, millions of Americans with the disease still suffer unnecessarily because doctors fail to adequately treat their pain, according to a new study.

The study, led by researchers at the University of Texas M.D. Anderson Cancer Center, found that a third of cancer patients and survivors have untreated or undertreated pain, an improvement from 18 years ago but still far short of what leaders in the field anticipated.

"Something is clearly not working," said Dr. Michael Fisch, chairman of M.D. Anderson's department of general oncology and the study's lead author. "The barriers to pain relief turn out to be more pervasive than we once thought."

Dr. Charles Cleeland, an M.D. Anderson professor, authored a 1994 pain study that found 42 percent of cancer patients' pain was inadequately treated. His findings led to the Health and Human Services guidelines. Cleeland said he was "disappointed" by the new findings, adding that he expected the number of patients suffering from pain would have diminished.

Minorities fare worse

The study, which was published in this week's Journal of Clinical Oncology, is the largest-ever evaluation of the treatment of pain in cancer patients and survivors in an outpatient setting. It found blacks and Hispanics were twice as likely as Caucasians not to receive pain medication.

Most cancer patients' pain can be well controlled, most effectively with pills. But Fisch noted that treatment is often complicated, sometimes evolving during the course of care as doctors identify a patient's previously unreported pain, change medications or adjust doses.

The new study did not investigate why cancer patients' pain is still not adequately treated. Fisch and Cleeland said common reasons include patients' fear of becoming addicted and doctors' fear of possible punishment by state regulatory agencies that monitor prescribing of high-dose pain killers. Insurance reimbursement of pain medication sometimes is inadequate, they said, and some doctors don't understand the extent of some patients' pain.

Fisch said the field has changed since the mid-1990s, when some leaders claimed pain could be well controlled by simple means in 90 percent of cases and that the risk of addiction in cancer patients was a myth, pronouncements he called overstatements. Still, he admitted to surprise that so many patients' pain is still not being adequately treated, and he could not explain why the Health and Human Services guidelines are not being followed more closely.

More than 19 million Americans have cancer or are survivors of the disease. Another 1.2 million new cases will be diagnosed this year, according to the American Cancer Society.

The study enrolled more than 3,000 people with invasive breast, prostate, colon and lung cancer and at risk for pain at 38 institutions across the country. They included patients in active treatment and survivors seeing doctors for follow-up appointments. Most were being treated by oncologists, not pain specialists.

A patient's experience

The researchers found that significant pain was an issue in two-thirds of patients and that 67 percent of them were receiving adequate treatment. Twenty percent of those reporting severe pain were not receiving any pain medication, and 13 percent were receiving ineffective pain medication.

The study included patients whose pain was caused by their cancer, by the treatment for their cancer or by illnesses they brought to their cancer care. Among those in the middle category was Merrily Chisholm, a 68-year-old Sugar Land woman whose chemotherapy for lung cancer wiped out her immune system and brought on shingles, a dormant virus that causes lasting nerve pain.

"It got worse with every treatment I underwent," said Chisholm, now retired, who battled three different tumors over 5½ years. "We tried everything, but nothing worked until the implantation of a nerve stimulation device this week that seems to distract me from the pain."

Fisch said Chisholm's case shows how complicated pain management can be in cancer patients. Fisch said it's a bit of a mystery why minorities receive less pain management than whites. Some oft-cited reasons, he said, include the cost of some medications, the stigma of certain side effects in those communities and unconscious stereotyping by doctors that minorities might not be good candidates for certain drugs.

"Unfortunately, we're still living in Groundhog Day," said Fisch. "I'm confident that when someone does this study again 20 years from now, things will have changed. I hope this study will be one of the things that awakened us."

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