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Cancer Patients Get Simple Words to Say How it Hurts

By Mary Brophy Marcus

Edith O’Neil-Page was once a cancer nurse, but even she had a hard time articulating her need for pain relief as she battled breast cancer three years ago. “Luckily, my husband saw when I needed something and either asked or encouraged me to ask,” says O’Neil-Page, 57, a director at Centinella Hospital and Medical Center in Inglewood, Calif. Now, a new tool for cancer patients and their families may help more of them speak up.

A panel of cancer pain experts put together by the National Comprehensive Cancer Network and the American Cancer Society has developed a set of guidelines to help patients assess and talk about pain, which gets inadequate treatment in about 30 percent of cancer patients, according to recent studies. Doctors have been faulted for their reluctance to prescribe potentially addictive drugs. But patients also contribute to undertreatment of pain. “Many people want to be a ‘good’ patient and appear strong,” says Richard Payne, a pain expert at Memorial Sloan-Kettering Cancer Center in New York, who helped create the guidelines. For others, like O’Neil-Page, depression and fatigue get in the way.

Plain speaking. Published this spring as a 38-page booklet, Cancer Pain Treatment Guidelines for Patients encourages patients to talk about their pain and gives them plain language to describe it. Specific words like “throbbing” and “burning” can help a doctor identify whether pain is emanating from muscle, bone, or nerves (box). The guide also has patients rate their pain on a numerical scale and prompts them with questions such as “How long has it hurt? Is there anything that makes it worse—like eating or sleeping? Did you have pain before your treatment or only after?” And it outlines pain control options.

Patients can view the booklet or order a free copy online at www.cancer.org or www.nccn.org. The authors say that new hospital accreditation standards, which call for pain assessment and management to be a standard part of care, may also encourage hospitals to put copies in patients’ hands.


Reprinted with permission from U.S. News & World Reports (6/18/01).

About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 25 of the world's leading cancer centers, is dedicated to improving the quality and effectiveness of care provided to patients with cancer. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers. The primary goal of all NCCN initiatives is to improve the quality, effectiveness, and efficiency of oncology practice so patients can live better lives. For more information, visit NCCN.org.

The NCCN Member Institutions are:

  • Fred & Pamela Buffett Cancer Center at The Nebraska Medical Center
  • City of Hope Comprehensive Cancer Center
  • Dana-Farber/Brigham and Women's Cancer Center
    Massachusetts General Hospital Cancer Center
  • Duke Cancer Institute
  • Fox Chase Cancer Center
  • Huntsman Cancer Institute at the University of Utah
  • Fred Hutchinson Cancer Research Center / Seattle Cancer Care Alliance
  • The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
  • Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Mayo Clinic Cancer Center
  • Memorial Sloan-Kettering Cancer Center
  • Moffitt Cancer Center
  • The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute
  • Roswell Park Cancer Institute
  • Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine
  • St. Jude Children's Research Hospital/The University of Tennessee Health Science Center
  • Stanford Cancer Institute
  • University of Alabama at Birmingham Comprehensive Cancer Center
  • UC San Diego Moores Cancer Center
  • UCSF Helen Diller Family Comprehensive Cancer Center
  • University of Colorado Cancer Center
  • University of Michigan Comprehensive Cancer Center
  • The University of Texas MD Anderson Cancer Center
  • Vanderbilt-Ingram Cancer Center
  • Yale Cancer Center/Smilow Cancer Hospital