How Do You Know When Distress Is Normal — or More Serious?

This can be hard to answer because distress is a normal part of having cancer. Sometimes certain signs or symptoms may be present that could be a “red flag” that distress is becoming excessive. These include:

• feeling overwhelmed by fears to the point of panic or an overpowering sense of dread
• feeling so sad that you feel you cannot go through treatment
• unusual irritability and anger
• inability to cope with pain, fatigue, and nausea
• poor concentration, having “fuzzy thinking,” and sudden memory problems
• having a very difficult time making any decisions
• feeling despair and hopelessness — wondering if there is any point in going on
• constant thoughts about cancer and/or death
• trouble sleeping (less than 4 hours)
• trouble eating (a noticeable decrease in appetite, or no appetite, for a period of weeks)
• family conflicts and issues that seem impossible to resolve
• questioning your faith and religious beliefs that once gave you comfort
• feeling worthless and useless

Sometimes, things from the past may make you or your family member more vulnerable to greater distress and need for help. These signs might include:

• having a relative who died as a result of cancer
• having a recent loss of someone close to you
• having had depression or suicidal thoughts in the past
• reliving a painful event from your past that seems unrelated to the current situation
• having had thoughts of harming yourself or someone else

If any of these signs or symptoms is present, talk to your doctor or nurse. You or your family member may need help with distress.

Tools to Help Measure Your Distress

Sometimes it is difficult to talk about distress in a clear way so that your cancer care team can understand the amount of distress you are having. They may suggest that a tool be used to help measure your distress. It is similar to a thermometer or a pain scale. For assessing pain, a patient might be asked, “How is your pain right now on a scale from 0 to 10?” This has proved to be a helpful and accurate way of measuring pain. A score above 5 indicates significant pain, which tells the cancer care team to reconsider the pain medicines or refer the patient to a pain specialist.

A similar distress tool uses the same 0 to 10 scale (see Figure 1, below). This assessment tool can be marked while you are waiting for treatment or an appointment. Just as with the pain scale, you are asked to circle the number from 0 to 10 (with 10 being the highest and 0 the lowest) that indicates how much distress you feel today and over the past week. Most people rate their distress accurately. If your answer is 5 or above, you likely have a moderate to excessive degree of distress. At this range, you should be further evaluated and some action should be taken to improve your level of distress.

Not only does this tool tell your team about how you are doing emotionally, but it also opens up the opportunity during your visit to talk and work out your specific problems. Surveys done in outpatient clinics have shown that between 20% and 40% of patients have significant levels of distress. So, don’t feel that this is happening to only you.

A problem list is included with the distress tool. Here you are asked to read through a list of problems and check possible reasons of the distress. The problems are grouped under the following categories:

• practical problems (like housing or child care)
• family problems (dealing with children or partner)
• emotional problems (worry and sadness)
• spiritual or religious concerns
• physical problems (pain, diarrhea, or appetite).

Once your cancer care team is aware that you are having problems in a particular area, they can address those concerns. A nurse usually provides the first follow-up contact after the distress tool and problem list are completed. She will ask questions after looking at the questionnaire and possibly refer you to other professionals like a social worker, nutritionist, or chaplain.

A social worker helps with the practical, family, and psychosocial issues. A mental health counselor, psychologist, psychiatrist, social worker, or nurse may be trained to help you if you are emotionally upset. A pastoral care counselor or chaplain is skilled in helping you with your spiritual concerns. You may request the clergy of your choice in many places. If the distress is mild, the team may choose to handle the problem within the existing team members or recommend a support group.

Another way to figure out if you need extra support for your distress is to use a self-reporting questionnaire. (See Box 1 below: Do I Need Professional Support?)

Remember when you answer these questions, answer them honestly. If you try to create an impression that is different from how you truly feel, then you will not receive help that could make all the difference in your cancer experience. There are no right or wrong answers to the questions — they are purely meant to measure your feelings. If many items are marked 4 (nearly all the time) or 5 (all the time), you probably need professional help with your distress level.

If you are the patient, you know that your family and caregivers are also under a great deal of stress. They are upset and anxious, just like you. They also have a lot of responsibility and want to do everything they can for you. That’s a lot of pressure! They may be asked to complete a self-assessment questionnaire, similar to the one in Box 2. They may need help even more than you. The cancer care team wants to help you, the patient, and they also want to make sure your family is coping.

Figure 1 - Screening tools for measuring distress

Instructions: Please circle the number (0-10) that best describes how much distress you have been experiencing in the past week, including today.

Please indicate if any of the following has been a cause of distress in the past week, including today. Be sure to check NO or YES for each.

Another way to figure out if you need extra support for your distress is to use a self-reporting questionnaire. (See Figure 2, below: Do I Need Professional Support?)

INTRODUCTION

COPING WITH DISTRESS

For more information on these treatment guidelines, or on cancer in general, call the NCCN at 1-888-909-NCCN or the American Cancer Society at 1-800-ACS-2345. Or you can visit these organizations’ web sites at www.cancer.org (ACS) and www.nccn.org (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.