Pain Advocacy 101

Cancer survivors, whose numbers have tripled in the last 30 years, may experience significant pain as a consequence of their treatment. Peripheral neuropathy, caused by injury to nerve tissue, may result from treatment with chemotherapeutic agents, and can cause pain, numbness and burning sensation. Radiotherapy and surgery can lead to a variety of acute and chronic pain syndromes. Recent studies have shown that unrelieved acute postoperative pain is a major risk factor for delayed recovery and the development of chronic pain problems.

If you have pain most or all of the time, you need to be taking your pain medicine on a regular schedule. And, if you are not getting the pain relief you want and need, be sure to talk to your doctor or nurse. Remember that good pain control is part of good cancer control.

To help improve pain management in your state, contact your state’s pain initiative. Contact information is on the website of the Alliance of State Pain Initiatives at www.aspi.wisc.edu.

Also, check out “Eight Facts Everyone Should Know About Cancer Pain” and “Cancer Pain Can Be Relieved: A Guide for Patients and Families,” both available at the website.

Because of long-term survival for those with cancer, there is often no meaningful distinction between chronic cancer and non-cancer pain, meaning that cancer survivors may be subjected to the same kind of challenges that have long plagued those with pain from another cause. There may be questions about the legitimacy of their pain; they may feel a stigma about having to take a pain medicine that can be abused; they may be suspected of being drug seekers or may be told that there is just nothing that can be done for their pain.

The University of Wisconsin School of Medicine and Public Health houses the Pain & Policy Studies Group, which analyzes federal and state policies that may affect access to effective pain control and produces a Progress Report Card (available at www.painpolicy.wisc.edu) that gives each state a grade based on whether the state has policies that enhance or impede the use of opioid analgesics for pain control. Opioid analgesics (narcotics) such as morphine have long been the mainstay of the management of moderate to severe cancer pain.

The report card indicates the quality of the state’s pain policies — the higher the grade, the more strongly the state’s laws and regulations support appropriate use of opioids for pain control. Unfortunately, a good grade on the report card does not guarantee enlightened attitudes about pain control or opioid analgesics among healthcare providers or drug regulators.

It is essential that all people with cancer understand certain facts about pain and its control so that they can be effective advocates for their own care.

First, pain puts a lot of stress on your body and your mind, so it is essential that it be controlled. You need to provide a detailed description of your pain — how bad it is, what it feels like, what makes it better and worse, and what activities it keeps you from doing that give meaning to your life.

Many people worry about becoming dependent on an opioid pain medicine, but the truth is that for as long as they have pain, they will need to have treatment for that pain. Depending on medicine for pain control is no different from depending on insulin for diabetes control.

Patients do become physically dependent on opioid analgesics, and if they suddenly stopped their medicine, they would experience withdrawal symptoms. This is a normal response and is not the same as addiction. People who are addicted can’t control their drug use and take drugs to get high, not to get pain relief. Addiction rarely occurs in people with cancer who take opioid analgesics for pain control.

In addition, patients often worry that their pain medicine will stop working — that they will have to take more and more and more to get relief from their pain. Although it is possible to develop “tolerance” to opioids, it is not likely, and should it occur, your doctor can increase the dose of your medicine.

A progress report card grades each state on its policies regarding the use of opioid analgesics for pain control.