"Make sure people are aware of what I found out, that you don't have to be in pain." - Breast cancer survivor, Toronto

Pain remains a major problem for people with cancer. Despite recent advances in understanding and managing pain, the majority of cancer patients experience pain that goes untreated or undertreated. A number of factors may help explain this, with the health care system, clinicians, and patients all playing a role.

Busy physicians and nurses may lack incentives to spend time talking with patients about managing pain, for instance, while government regulations limit the use of certain pain medications. Many health care professionals themselves are not adequately trained in managing pain effectively.

Many patients, for their part, are reluctant to mention pain. Some may not want to distract physicians from treating the cancer, or they may view talking about pain as complaining - as not being a "good" patient.

Most important, many assume that pain and cancer go hand-in-hand - that pain is inevitable, something to "tough out." In fact, cancer pain can be effectively controlled in most cases, and experts have been fighting these misconceptions for years.

Such beliefs were common among 18 Canadian women with breast cancer who were recently interviewed about their experiences with pain. A summary of the interviews, published in the February Journal of Pain and Symptom Management, provides a comprehensive look at questions about pain from a group of cancer patients.

The interviews also offer a window on experiences that were, in some cases, made more difficult because the women did not know how to get help for their pain. Unfortunately, this is not uncommon among cancer patients, says Jackie Bender, a doctoral student at the University of Toronto and the study's first author.

Her interviews consistently showed that patients lacked knowledge about the options for controlling pain, the services available for managing pain, and how to access them. She was struck that patients did not initially know such services existed.

As one woman said, "Why should I know that there are pain doctors or pain specialists out there? I had no idea."

"Many of the women I spoke to experienced severe pain that had not been managed well," says Ms. Bender. "Fortunately, when I spoke to them, they were receiving help from pain specialists." At the time of the interviews the majority - more than 70 percent - were experiencing mild pain.

One woman commented, "I wish I knew then that there was a painkiller like this to alleviate my pain because... then, I wouldn't have suffered so much, right?"

The descriptions of pain were sometimes accompanied by concerns about addiction and tolerance, particularly with respect to opioid drugs. Such concerns are common among cancer patients, though experts stress that few people who take pain medications for cancer become addicted to the medications.

Many women in the study avoided or discontinued pain medication out of fear of side effects. At the same time, some participants wanted to learn about alternative and nontraditional approaches to pain management.

The women also wanted to learn about the pain experiences of others. "People were seeking out others for support, as well as for validation that their own pain was typical or normal," says Ms. Bender.

The participants' questions - in all, more than 200 - may be relevant to other cancers and other diseases. The researchers, led by Dr. Alejandro R. Jadad of the Centre for Global eHealth Innovation at the University of Toronto and the University Health Network, are now looking at pain from the perspectives of patients with other chronic conditions, or who belong to different ethnic or cultural communities.

So far, the research has identified some core themes across the patient populations as well as themes that are specific to each group.

As a next step, the researchers are developing an interactive Internet tool that patients can use to explore questions about pain and communicate with other patients in pain before meeting with physicians and nurses.

"We see it as a clinical appointment preparation tool for people who have pain," says Ms. Bender, noting that patients and health professionals have to communicate effectively about pain. The Web site aims to help patients organize their questions so that they can be addressed during appointments.

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Formulating questions about pain - or any health issue - is not easy, and patients worry that their questions may take more time than is allotted for a typical consultation.

"If pain is to be managed adequately, efficient mechanisms are needed to help patients identify and articulate their questions and get answers," the researchers wrote.

The Web site could certainly help, but real progress will involve all parties. Patients have to articulate their needs, while clinicians must create environments where people feel comfortable talking about their fears and concerns about pain.

"It is important to address pain from the very beginning of cancer treatment because unrelieved pain can further erode an already compromised quality of life," says Ms. Bender.

As more and more people survive cancer and return to productive lives, managing pain will be critical to ensuring a good quality of life for each one.

As one woman said, "I don't want pain to stop my life. I want to be able to live with it."

—By Edward R. Winstead