When Michael Baker's lymphoma went into remission, he still had pain in his stomach so fierce that it doubled him over every time he ate.
His doctors at H. Lee Moffitt Cancer Center said they couldn't find any reason for the pain. They were hesitant to prescribe painkillers. Baker, a 32-year-old cabinet maker from Lakeland, seemed destined to keep suffering.
Then he met the Pain Management Team at Moffitt and got on 24-hour doses of morphine. Now he's able to eat, and enjoy himself.
"(The doctors) didn't take me seriously," Baker said. "How much pain is a person supposed to go through?"
The answer is: none. Or at least, very little.
Guidelines released Wednesday by the federal Agency for Health Care Policy and Research aim to alleviate unnecessary suffering by explaining what types of medication can be given, and in which quantities, to make pain go away.
Copies of the guidelines are being given to doctors, nurses and others involved in cancer care. They are also available to patients.
Meanwhile, a bill is being introduced in the Florida Legislature that would prevent doctors from being disciplined by hospitals or by state officials for prescribing large doses of narcotics for cancer patients. This "intractable pain act" already has been enacted in several other states.
Physicians' fears of getting in trouble for such prescriptions are not irrational, said Dr. Shashidhar Kori, leader of the Moffitt team that rescued Baker from his agony. State computer audits of pharmacies pounce on questionable amounts of narcotics.
More than 8-million Americans have had cancer or are still struggling with it. This year, an estimated 1.2-million cases will be diagnosed.
Most patients with advanced cancer are in moderate to very severe pain that is not necessary, according to the agency report.
Uninsured and low-income people are those at greatest risk of undertreatment, the report says, because their cancers are frequently diagnosed at a later stage when the chance of a cure is low.
The guidelines were put together by a panel of doctors, nurses, patients and others knowledgeable about cancer after consulting with hundreds of experts.
One reason patients sometimes don't get enough pain medicine is that they don't ask for it. They don't want to be perceived as whiners.
"When they complain about pain, they feel they're being bad patients," said Lisa Sienon, nurse manager for the Moffitt pain team. "They think once they have a diagnosis of cancer, they're supposed to suffer pain."
A doctor will ask, "How are you doing?" The typical cancer patient will answer "Fine," as if it were a reflex act. Then someone such as Dr. Kori or Sienon will follow up and ask, "What's your pain level, on a scale of 1 to 10?" and find out it's 8. It's a matter of knowing how to ask the question.
Cancer patients have a right not to suffer, Kori said, but most patients don't realize it.
"Until they start demanding that right, physicians' attitudes probably won't change," he said.
Doctors labor under a number of myths, according to pain team members.
The most pernicious obstacle to proper dosing is the unfounded belief that giving patients narcotics to fight pain will lead to addiction, they said.
"Patients who require medication do not become psychologically dependent on it," Kori said. When the time comes to take the patient off the drug, he said, it can be tapered off in a matter of days.
Another myth is that the very old and very young are less sensitive to pain than others, the team said. Young children may not be able to express how they're feeling _ and may not want to if they think it will bring back the white-coated people with the shot needles _ but they certainly feel it.
Proper dosages may vastly exceed what doctors have been trained to regard as maximum. The Moffitt pain team said some patients need thousands of milligrams of morphine a day, while the maximum dose is generally thought to be 30 to 40.
The team members told of one patient, a 32-year-old Clearwater woman, who suffered terribly during her final hours because an emergency room doctor could not believe the prescription dosage of 2,000 milligrams every eight hours, written at Moffitt.
"She died in misery," Kori said. "If you're wondering why we're zealots, (that's why)."
The guidelines include the following recommendations:
Use oral medications as long as the patient can swallow; if not, try other non-invasive methods such as skin patches, under-the-tongue doses or suppositories.
Do not be afraid to use narcotics such as morphine, if they are needed, and in large quantities.
Don't substitute relaxation exercises, hypnosis and other techniques for painkilling drugs. They may be used in combination.
How to get information
The Agency for Health Care Policy and Research is distributing free copies of "Management of Cancer Pain: A Quick Reference Guide for Clinicians" and versions designed for patients, in both English and Spanish, through the National Cancer Institute. Call (800) 422-6237 (800-4-CANCER). Those with facsimile machines can obtain the documents by calling (301) 594-2800. Also, cancer patient Michael Baker is starting a computer bulletin board to communicate with other cancer patients. Those with a modem may contact his computer at (813) 688-9877.