As many as 75 percent of patients with solid tumors suffer from severe chronic pain, and more than 40 percent of cancer patients aren't getting the pain management they need. Research has suggested that one reason is the emphasis on treating only the pain.
In a study reviewing methods for managing cancer-related pain in cancer patients, Dr. Russell Portenoy of Beth Israel Medical Center in New York believes the best treatment involves a whole-body approach that is specific to each individual that will alleviate pain and suffering.
Opioid painkillers should be a main component of the regimen, which should start at the time of diagnosis and continue throughout the course of the disease. In addition to pain relief, treatment should include radiation therapy or other cancer treatment if appropriate and "non-pharmacological treatments can be used to improve pain control, coping, adaptation, and self-efficacy," Portenoy wrote.
Another barrier to pain relief among cancer patients may be the belief that pain is part of the disease process.
"Part of the problem is that the pain may be underreported," said Baumann. "Patients may believe it's part of the cancer and are unaware of the treatments available."
"A lot of times, patients' focus is on treating cancer and saving their life, and pain control may take a back seat," she added.
Steinberg, who lives with chronic pain, is now on the Board of Directors of the American Pain Foundation, a non-profit organization that helps educate people about pain. She also runs support groups throughout New England.
"The most common thing people say to me is that they spend years trying to find something to help them," she said. "Research shows that people see about four or five doctors."
Chronic pain, usually defined as pain lasting longer than three months or as pain that persists beyond what is expected for a certain condition, is difficult to treat. The annual cost of chronic pain is about $210 billion, according to the National Research Council.
Researchers from the University of Washington in Seattle reviewed some of the most common treatments for this pervasive condition, such as nerve blocks, surgeries, physical therapy and implantable devices that deliver pain medications.
They concluded that "currently available treatments provide modest improvements in pain and minimum improvements in physical and emotional functioning." As a result, they believe the focus should be on combining therapies and talking to patients about how to manage pain without expecting total relief.
One of the biggest problems is the complex nature of chronic pain.
"We can't point to one anatomical structure and say, 'Ah, that's the cause,'" said Dr. Richard Deyo, professor of evidence-based medicine at Oregon Health Sciences University in Portland. "There are many anatomical structures involved, and it's a mind-body issue as well. We need to understand how the brain handles chronic pain."
Opioids have long been a mainstay of chronic pain treatment, but Deyo says a growing body of evidence suggests they are not very effective. There is also some reluctance to use opioids among doctors and patients because of their notoriously addictive nature.
But Baumann, who is also a physician at the Emory Center for Pain Management in Atlanta, strongly disagrees.
"We have all sorts of things for chronic pain that are very effective," she said. She also recommends that people living with chronic pain see a pain specialist.
Physicians should not rely solely on opioids, and patients should never approach a doctor asking for them by name. Patients and doctors should know there are alternatives to narcotics, Baumann added.
As with treatment for cancer pain, the authors of the chronic pain study say pain management should integrate multiple types of therapies since none of the currently available treatments work very well.
One of the most important elements of pain management, experts say, is for patients to abandon unrealistic expectations for treatment.
"In many cases, we can't cure chronic pain," said Deyo.
Steinberg gets relief by combining aqua exercise, land exercise and limiting the time she's upright.
She wants people to know that despite the frustration and misery of chronic pain, life can go on.
"Pain can be managed, and you can go on to have a quality of life that you didn't have when you first got diagnosed," she said.