Distress Treatment Guidelines for Patients – Version II/July 2005

With this report, patients have their first access to information on how decisions about distress are made at the nation’s leading cancer centers. Originally developed for cancer specialists by the National Comprehensive Cancer Network (NCCN), these treatment guidelines have now been translated for the general public by the American Cancer Society (ACS).

Since 1995, doctors have looked to the NCCN for advice on treating cancer. The NCCN Clinical Practice Guidelines were developed by a diverse panel of experts from 20 of the nation’s leading cancer centers.

For more than 85 years, the public has relied on the American Cancer Society for information about cancer. ACS books and brochures provide comprehensive, current, and understandable information to hundreds of thousands of patients, their families, and friends. This collaboration between the NCCN and ACS provides an authoritative and understandable source of cancer treatment information for the general public. These patient guidelines will help you better understand how to make decisions about your cancer care that are important to you.

To make an informed decision you will need to understand some of the medical terms your doctor uses. You may feel you're on familiar ground already, or perhaps you need to refer to the various sections listed in the table of contents. We've also provided a glossary.

What is Distress?

In this guideline, distress is a term used to describe unpleasant feelings or emotions that may interfere with your ability to cope with cancer, its physical symptoms, and its treatment. Distress covers a wide range of feelings, from powerlessness, sadness, and fear to depression, anxiety, and panic. In addition to feelings, stress may also affect such areas of your life as your thoughts and behavior.

Distress is a normal response when you or a family member receives a diagnosis of cancer. Cancer causes distress, in part, because of the attitudes and fears attached to cancer. The idea that cancer always leads to death is wrong: About 9 million Americans are alive today who have had cancer.

But despite the progress in treating cancer, people are still understandably upset to learn they have it. All people who are diagnosed with cancer have fears and concerns about what may happen to their body, how their family will cope with the cancer experience, and what the future will be like for their children. People wonder, “Am I going to die?” and “Why is this happening to me?”

Once you have been diagnosed with cancer, you no longer feel you are safe from a life-threatening disease. You may feel exposed and weak. Such feelings often persist through treatment and may be joined by anxiety and sadness.

One normal time of worry is when you are waiting for the first treatment to begin. “The worst time for me was waiting for that first chemotherapy treatment,” expressed a person with cancer. “Once it was over, and it wasn’t as bad as I thought it would be, I was OK. I felt better because I was finally doing something about the cancer.”

Dealing with the side effects of treatment — such as fatigue, loss of hair, weight loss or gain, and disruption in the work and home routine — is also stressful.

Completing cancer treatment is often followed by a period of even greater distress. One patient put it this way: “I’m on my own now — and I’m just waiting to see what will happen next.”

Follow-up visits to the cancer doctor (oncologist) are particularly scary. Most everyone will have some fear the cancer will return — this is normal. “Every time I have a headache, I’m convinced it’s the cancer returning— and I had ovarian cancer!” one patient said.

Having cancer is a stressful experience. Being upset and worried are part of the process. Sometimes, however, distress can go from a normal level to an excessive one that can interfere with your treatment and your ability to cope with the illness.

It is not a sign of character weakness to be distressed enough that it interferes with your ability to do your usual activities. With this report, we attempt to explain this range of distress — from normal to excessive — and to offer advice for handling your feelings in a positive way.

Your first line of defense in coping with distress is having a doctor and cancer care team with whom you feel comfortable. Talk to them about how you feel. They will direct you to the help you need. Remember that they are treating YOU, not just your cancer, and they depend on your input to tell them exactly how you are feeling.

The entire report is also available as a PDF file:

NCCN Distress Guidelines.pdf 347 k

You will need Adobe Acrobat to read this file.  Click here to download a current version.

EVALUATION

The mutual goal of the National Comprehensive Cancer Network® (NCCN®) and the American Cancer Society (ACS) partnership is to provide patients and the general public with state-of-the-art cancer treatment information in understandable language. This information, based on the NCCN's Clinical Practice Guidelines, is intended to assist you in the dialogue with your physician. These guidelines do not replace the expertise and clinical judgment of your physician. Each patient's situation must be evaluated individually. It is important to discuss the guidelines and all information regarding treatment options with your physician. To ensure that you have the most up-to-date version of the guidelines, consult the web sites of the ACS (www.cancer.org) or NCCN (www.nccn.org). You may also call the NCCN at 1-888-909-NCCN or the ACS at 1-800-ACS-2345 for the most recent information.

NCCN Clinical Practice Guidelines were developed by a diverse panel of experts. The guidelines are a statement of consensus of its authors regarding the scientific evidence and their views of currently accepted approaches to treatment. The NCCN guidelines are updated as new significant data become available. The Patient Information version will be updated accordingly and will be available on-line through the NCCN and the American Cancer Society web sites. To ensure you have the most recent version, you may contact the American Cancer Society or the NCCN.

© 2005 by the National Comprehensive Cancer Network (NCCN) and the American Cancer Society (ACS). All rights reserved. The information herein may not be reproduced in any form for commercial purposes or downloaded and stored in any information-retrieval system without the express written permission of the NCCN and the ACS. Single copies of each page may be printed out for personal, noncommercial use only.