Cancer-Related Pain A Guide for Patients and Caregivers
Copyright 2011 Conrad & Associates, LLC All Rights Reserved No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying or recording, or by any information storage and retrieval system, without the written permission of the publisher, except when permitted by law. ii Cancer-Related Pain
Contents Introduction... 3 Types of Cancer-Related Pain... 4 Treatment Goals... 8 Types of Pain Medicines... 9 Other Types of Medicines Used in. Cancer Pain Treatment... 11 Responsible Prescription Use... 12 Non-Medical Treatments for Cancer Pain... 13 Caring for a Person with Cancer Pain... 17 Moving Forward... 19 Resources... 21 A Guide for Patients and Caregivers 1
Did You Know? Cancer can occur at any age, but it occurs more as we get older. The average age of people diagnosed with cancer is 66. Nearly 1.5 million people are diagnosed with cancer every year most of them older adults. Treating any cancer-related pain they might have is a critical issue! 2 Cancer-Related Pain
Introduction Pain is one of the common concerns for people with cancer. Sometimes cancer itself is painful, and sometimes the treatments used to fight cancer may involve pain.. But having cancer does not mean you will have pain. And for people who do have pain, there are many ways to relieve it. Nearly all cancer-related pain can be managed these days. It s important to understand that everyone has a right to relief from their pain. But, many people don t get the pain relief they need. This program will help you learn about cancer-related pain so that you get the most effective relief possible. Reading this booklet can help you: Work with your health care team to find the best ways to control pain Understand the types of cancer-related pain Learn about different types of pain medicines and.. their responsible use Know about other ways to help manage pain A Guide for Patients and Caregivers 3
Types of Cancer-Related Pain In general, the more advanced a cancer is, the more likely. a patient will feel pain. Pain is reported in: About 1 of every 3 patients newly diagnosed with cancer Up to half of patients receiving cancer treatment Between 70% and 90% of patients with advanced cancer Some cancer-related pain is short-term. This is called acute pain. It typically goes away as the body recovers from surgery or other treatments used to fight the cancer. But sometimes pain lasts longer. This is called chronic pain. This type of pain can occur because: The cancer presses on an organ, bone, or nerve Cancer treatment damages nerves, which then send pain signals even when there is no actual damage to the body Pain persists even when part of the body, such as a breast, is removed (called phantom pain) Pain related to cancer can also change from day to day or even moment to moment. These changes can lead to what s called breakthrough pain. Breakthrough pain is pain that breaks through the relief provided by a pain medicine. Breakthrough pain may be difficult or impossible to predict, but it can be managed with the right treatment. 4 Cancer-Related Pain
Like any type of pain, cancer-related pain can t be measured with any test or machine. But cancer pain is real. Most health care professionals follow the motto that pain is what the patient says it is. Your health care team should ask you at every visit about any pain you are feeling. But, this doesn t always happen. You have a right to ask how your pain will be managed, even if nobody else brings it up! About Your Pain When your health care team asks about your pain, they may begin with questions about what the pain feels like and how it is affecting your life. You may also be asked to rate your pain and how much it hurts on a scale of some kind. A Guide for Patients and Caregivers 5
Date:. Some scales use numbers from zero to 10: 0 1 2 3 4 5 6 7 8 9 10 No Pain Mild Pain Moderate Pain Severe Pain Worst Pain Imaginable Another important way to monitor your pain is with a pain diary, such as the sample found at the back of this booklet. With a diary, you can keep track of such things as: Pain intensity how bad it feels The time of day when you had the pain What you were doing when pain began When you took your pain medicines How long the pain lasted Daily Pain Diary Use this diary to record your pain and what you did to ease it each day. This will help your health care team understand your pain better. Fill in the information and bring it with you to your next appointment. If your pain is not relieved, tell your health care provider. 0-10 Pain Rating Scale 4 5 6 0 1 2 3 7 8 9 10 No Pain Mild Pain Moderate Pain Severe Pain Worst Pain Imaginable Time Where is the pain and how does it feel? (ache, sharp, throbbing, shooting, tingling, etc.) Pain What were you Did you take Rating doing when the pain medicine? pain started or (0 to 10) increased? What did you take and how much? What else How long did After an hour, Include here notes about did you do to the pain last? what is your benefits experienced ease your pain pain rating? (e.g., better able to sleep, (e.g., rest, ice, eat, be active) and/or heat)? (0 to 10) side effects causing difficulty (e.g., constipation, drowsiness, confusion) Cancer Information 1.800.ACS.2345 www.cancer.org 6 Cancer-Related Pain
Keeping up with your pain this way can help you and your health care provider see patterns that can lead to better pain management. For example, if pain is being felt near the time you are to take your pain medicine, you may need a higher dose or a different medicine. The Bottom Line If pain is a concern for you, talk to the health care team about it. You should never accept having pain as a normal part of having cancer! A Guide for Patients and Caregivers 7
Treatment Goals If you are in pain, your most urgent goal is to make it stop. But there may be other goals to think about. Pain medicines may produce side effects that are not easy to deal with. Your health care team will help you with these side effects. They may try different pain medicines to. find the one that is best for you. For example, some people may accept some pain so they don t have to deal with constipation. Living Well We don t beat the Reaper by living longer. We beat the Reaper by living well. Randy Pausch, professor at Carnegie Mellon University, in a lecture to students about his own battle with pancreatic cancer 8 Cancer-Related Pain
Types of Pain Medicines Relieving pain usually requires some kind of pain medicine. There are two basic types: Over-the-counter medicines. These can be bought at pharmacies and do not require a prescription. Prescription medicines. These are medicines that. may be prescribed for moderate to severe cancer-. related pain. These medicines come in many forms and strengths... For example, some are long-lasting, while others. are short-acting. Your health care team will work. with you to choose the medicine, or medicines,. that are best for you and your specific pain. With both types of medicine, it is important to take them exactly as prescribed or exactly as described on the label. If your pain is chronic, taking a medicine regularly allows you to keep a steady level of it in your body. This helps to keep your pain under control. It also may reduce some side effects, such as nausea and feeling sleepy. If you wait until the pain is bad to take the medicine, you may need to take much more just to get the pain under control. A Guide for Patients and Caregivers 9
Some people with cancer-related pain need higher doses than others. Needing higher doses is not a sign of weakness and does not mean you are becoming an addict. Fears about addiction may lead people to suffer when they don t need to. When used as prescribed by a doctor, pain medicines may improve your activity levels and reduce your suffering. Pain medicines involve some side effects. Some of these, such as nausea and feeling sleepy, usually go away with continued use. Other side effects, such as constipation, do not go away. For constipation, you can increase fiber in your diet, drink plenty of water, and use treatments suggested by your health care team. This preventive treatment should begin when the pain medicine is started. Did You Know? Addiction is when a person can no longer control their use of a drug, even if it is causing them harm. Using the drug damages their ability to work and maintain relationships. Tolerance (physical dependence) is not the same as addiction. Tolerance means your body has adjusted to a medicine and the same dose doesn t work as well as it once did. This happens with other types of medicines, not just pain medicine. Physical dependence means that if the medicine is stopped suddenly, withdrawal symptoms will set in. These symptoms can be avoided by tapering down a medicine slowly, under medical supervision, to give the body time to adjust. 10 Cancer-Related Pain
Other Types of Medicines Used in Cancer Pain Treatment Some medicines work directly to ease pain. Other types of medicines may help to relieve pain in different ways. Sometimes a combination of medicines works better than a single drug. For example, you might be given one type of pain medicine for longer relief, and a fast-acting medicine for breakthrough pain. Your health care team might also add one or more of. the following: An antidepressant or anticonvulsant if you are having. a tingling or burning-type of pain An anti-anxiety medicine if you are having muscle. spasms with your pain A steroid if you are having bone pain or pain caused. by tissue swelling A Guide for Patients and Caregivers 11
Responsible Prescription Use Being responsible about using medicines means: Being careful about where medications are used and stored (and how unused pills are disposed of) Being aware of any lost medicines Never sharing your medicines Using medicines exactly as directed Another part of responsible use is to be aware of how you react to the medicines you are taking. Contact your health care provider if you have any unusual symptoms. 12 Cancer-Related Pain
Non-Medical Treatments for Cancer Pain Many kinds of treatments that do not involve medicines may be used to help relieve cancer pain. Such techniques can be used together with pain medicine, though they can also be used alone. The following techniques may be helpful for people with pain related to cancer: Emotional support and counseling. Dealing with cancer, cancer treatments, and cancer-related pain can be stressful and exhausting. This is very normal, but it can cause you to feel anxious or depressed, or to have problems with family and friends. Talking to a counselor or other mental health professional can help you sort out your feelings and learn ways to deal with strong emotions. You can also get emotional support from talking with others who are having the same, or similar, issues. Cancer and chronic pain support groups can be found in almost every city. You can also find online support groups. Support groups allow people to share their feelings and swap tips to manage pain better. (You can find support groups through some of the organizations listed in the Resources section of this booklet.) A Guide for Patients and Caregivers 13
Skin stimulation involves a number of techniques using pressure, warmth, cold, vibrations, or menthol. Such techniques change the flow of blood to the stimulated area and may reduce pain there. Skin stimulation is something you do yourself, but you should learn how to do this from a health care professional. If you are having, or have had, radiation therapy for cancer, you should talk with your health care team before trying any skin stimulation technique. Acupuncture uses very fine needles put into the skin. Some studies show that acupuncture can relieve pain. It seems to work best for back, neck, and arthritis pain. Hypnosis is a range of techniques that can alter people s awareness of themselves or things around them. It was first used more than 100 years ago to help patients in pain. Studies of hypnosis continue, but some early results are promising. When a patient is hypnotized, his or her mind is focused and aware. For reasons that are not understood, this state can relieve many types of pain. 14 Cancer-Related Pain
Meditation is any method of focusing and calming the mind. Several medical centers now use meditation to help patients manage chronic pain. The techniques vary, but all involve calming the body, being aware of oneself, and focusing attention. Some studies have shown that patients who meditate regularly may function better. and have less pain. Biofeedback training teaches people how to recognize when they are stressed or tense. Different types of equipment are used to monitor such things as heart rate, brain activity, blood pressure, or muscle tension. By measuring and becoming aware of these physical reactions, you can learn to relax and bring the responses back to normal. Some studies have shown that biofeedback training can reduce pain in patients with advanced cancer. A Guide for Patients and Caregivers 15
Caregiver Support Strong feelings and sudden mood changes can make it challenging to support a person coping with cancerrelated pain. For people who have pain, there are many ways to relieve it. Nearly all cancer-related pain can be treated and controlled. 16 Cancer-Related Pain
Caring for a Person with Cancer Pain Cancer itself, and cancer-related pain, can cause a person. to have strong feelings and sudden mood changes. These. are normal, but they can make it challenging to help a person who is dealing with pain. Here are some suggestions for ways to help: Believe what the person says about their pain. Encourage the person to keep a pain diary, or offer to help fill it out for them. Watch for signs that the person is depressed, such.. as sleep or eating changes, lack of energy, weight gain or loss. (Note, however, that such changes can also be caused by cancer treatments themselves.) If you are concerned, talk to the person s health care provider. Take care of yourself and see to your own needs. If you burn out or develop your own problems, you won t be able to care for the person in pain. Offer to help with the paperwork involved with... cancer care. Offer to go with the person on visits to his or her health care team. Offer to keep track of medicines and prescription refills. Accept offers of help from other people. A Guide for Patients and Caregivers 17
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Moving Forward You have now learned that nearly all cancer-related pain can be treated and controlled. Nobody should suffer with pain! To get the pain relief you need: Talk openly and honestly about your pain with your health care team Raise the issue of pain management at every visit,. even if it is not brought up by anyone on your health care team Use pain medicines exactly as directed Monitor your pain, so you can talk about it with. your health care team Overcome any fears or concerns you might have. about using pain medicines by talking about them. with your health care team It may take some time to find the best treatment for you. Treating cancer-related pain is more like a marathon than a sprint! The ways that cancer pain affects you, and the way it is treated, may change over time as the disease course changes. For many people, the cancer is cured and any pain from the cancer or its treatment goes away. But no matter what course your cancer takes, you can be hopeful that any pain you feel can be treated and controlled. A Guide for Patients and Caregivers 19
20 Cancer-Related Pain
Resources American Cancer Society www.cancer.org 800-227-2345 AGS Foundation for Health in Aging www.healthinaging.org American Academy of Pain Medicine www.painmed.org 847-375-4731 American Chronic Pain Association www.theacpa.org 800-533-3231 American Geriatrics Society www.americangeriatrics.org 212-308-1414 American Pain Foundation www.painfoundation.org 888-615-7246 National Institute of Neurological Disorders and Stroke www.ninds.nih.gov 800-352-9424 www.partnersagainstpain.com A Guide for Patients and Caregivers 21
Sponsor Purdue Pharma L.P. Purdue Pharma is a privately held pharmaceutical company founded by physicians. It is focused on meeting the needs of healthcare providers and the patients in their care. Together with Purdue Products L.P. and other independent associated companies, Purdue is dedicated to finding, developing, and bringing to market new medicines and related products that improve health outcomes. We are known for our pioneering research on persistent pain, a principal cause of human suffering. Partners Against Pain Visit www.partnersagainstpain.com, a site designed to provide patients, their caregivers, and healthcare professionals information and resources to help understand, measure, and track pain, as well as suggestions about advocating for the rights of people dealing with pain, and helpful hints and resources for finding pain care. The newly enhanced PartnersAgainstPain.com website includes the Caregiver s Corner, which offers information, encouragement, and tools addressing the challenges of caring for a loved one in pain. Featured story videos highlight ways to manage pain or provide care for someone in pain on PartnersAgainstPain.com.. Check it out at: 22 Cancer-Related Pain
Partners American Cancer Society The American Cancer Society is a nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. We save lives and create more birthdays by helping you stay well, helping you get well, by finding cures, and by fighting back. AGS Foundation for Health in Aging In 1999, the American Geriatrics Society reached beyond its traditional role as a professional medical society and launched the AGS Foundation for Health in Aging (FHA). The FHA aims to build a bridge between geriatrics healthcare professionals and the public, and advocate on behalf of older adults and their special needs: wellness and preventive care, self-responsibility and independence, connections to family and community. The FHA champions initiatives in public education, clinical research, and public policy that advance the principles and practice of geriatrics medicine; educate policymakers and the public on the healthcare needs and concerns of older adults; support aging research that reduces disability and frailty, and improves quality of life and health outcomes; encourage older adults to be effective advocates for their own health care; and. help family members and caregivers take better care of their. older loved ones and themselves.. For more information, please. visit www.healthinaging.org. A Guide for Patients and Caregivers 23
Credits SPONSOR Purdue Pharma L.P. PARTNERS American Cancer Society AGS Foundation for Health in Aging Project Manager Carol Brandenburg Executive Producer Conrad Productions Guidebook Author Stephen R. Braun Medical Writer braunmedicalmedia.com Guidebook Design Design Partners dgdesignpartners.com 24 Cancer-Related Pain
DISCLAIMER: This guidebook is intended for informational purposes only, with the understanding that no one should rely upon this information as the basis for medical decisions. Anyone requiring medical or other health care should consult a medical or health care professional. Any actions based on the information provided are entirely the responsibility of the user and of any medical or other health care professionals who are involved in such actions. Purdue Pharma L.P. (PP), the American Cancer Society (ACS), and the AGS Foundation for Health in Aging (FHA), working with producer Conrad & Associates and guidebook author Stephen Braun, have used reasonable efforts to include timely and accurate information in this guidebook. Accordingly, PP, the ACS, FHA, the producer, and the writer make no representations or warranties, express or implied, regarding the accuracy or completeness of the information provided herein and specifically disclaim any liability, express or implied, in connection therewith. A Guide for Patients and Caregivers 25
Daily Pain Diary You are the best source of information about your pain. Your health care team and loved ones have no way of knowing or understanding your pain unless you tell them. It is always helpful to use words that clearly and specifically describe your pain. You should tell your doctor, nurse, pharmacist, and family or friends: Where you feel pain Be specific, for example: the lower left side of my back. What it feels like for example: Sharp like a bad cut or bee sting Dull like a sore muscle/muscle ache Throbbing like a headache Steady like a toothache or sore throat Burning like a bad sunburn How severe the pain is using the 0 to10 pain intensity scale rating tool (described next page) How long the pain lasts for example, minutes, hours, days What eases the pain for example, cold compress, heat, repositioning, medication What makes the pain worse for example, moving, changing positions, it gets worse in the evening, etc. What pain medicines you are taking and how much relief you get from them
Daily Pain Diary Date: Use this diary to record your pain and what you did to ease it each day. This will help your health care team understand your pain better. Fill in the information and bring it with you to your next appointment. If your pain is not relieved, tell your health care provider. 0-10 Pain Rating Scale 4 5 6 0 1 2 3 7 8 9 10 No Pain Mild Pain Moderate Pain Severe Pain Worst Pain Imaginable Time Where is the pain and how does it feel? (ache, sharp, throbbing, shooting, tingling, etc.) Pain What were you Did you take Rating doing when the pain medicine? pain started or (0 to 10) increased? What did you take and how much? What else How long did After an hour, Include here notes about did you do to the pain last? what is your benefits experienced ease your pain pain rating? (e.g., better able to sleep, (e.g., rest, ice, eat, be active) and/or heat)? (0 to 10) side effects causing difficulty (e.g., constipation, drowsiness, confusion) Cancer Information 1.800.ACS.2345 www.cancer.org Tools for Rating Your Pain Using a pain scale is helpful to describe how much pain you are feeling. For example, try to assign a number from 0 to 10 to your pain level. If you have no pain, use a 0. As the numbers get higher, they stand for worse pain. A 10 means it is the worst pain you have ever had. For example, My pain is a 7 on a scale of 0 to 10. 0 1 2 3 4 5 6 7 8 9 10 No Pain Mild Pain Moderate Pain Severe Pain Worst Pain Imaginable You can use a 0-10 rating scale to describe: How bad your pain is at its worst How bad your pain is most of the time How bad your pain is at its least How your pain changes with treatment
Daily Pain Diary Use this diary to record your pain and what you did to ease it each day. This will help your health care team understand your pain better. Fill in the information and bring it with you to your next appointment. If your pain is not relieved, tell your health care provider. Time Where is the pain and how does it feel? (ache, sharp, throbbing, shooting, tingling, etc.) Pain Rating (0 to 10) What were you doing when the pain started or increased? Did you take pain medicine? What did you take and how much? Cancer Information 1.800.ACS.2345 www.cancer.org
Date: 0-10 Pain Rating Scale 0 1 2 3 4 5 6 7 8 9 10 No Pain Mild Pain Moderate Pain Severe Pain Worst Pain Imaginable What else did you do to ease your pain (e.g., rest, ice, heat)? How long did the pain last? After an hour, what is your pain rating? (0 to 10) What benefits did you have (e.g., better able to sleep, eat, be active) and/or what side effects caused you difficulty (e.g., constipation, drowsiness, confusion)?
Daily Pain Diary Use this diary to record your pain and what you did to ease it each day. This will help your health care team understand your pain better. Fill in the information and bring it with you to your next appointment. If your pain is not relieved, tell your health care provider. Time Where is the pain and how does it feel? (ache, sharp, throbbing, shooting, tingling, etc.) Pain Rating (0 to 10) What were you doing when the pain started or increased? Did you take pain medicine? What did you take and how much? Cancer Information 1.800.ACS.2345 www.cancer.org
Date: 0-10 Pain Rating Scale 0 1 2 3 4 5 6 7 8 9 10 No Pain Mild Pain Moderate Pain Severe Pain Worst Pain Imaginable What else did you do to ease your pain (e.g., rest, ice, heat)? How long did the pain last? After an hour, what is your pain rating? (0 to 10) What benefits did you have (e.g., better able to sleep, eat, be active) and/or what side effects caused you difficulty (e.g., constipation, drowsiness, confusion)?
Cancer-Related Pain A Guide for Patients and Caregivers Pain is a common concern for people with cancer. But today nearly all pain related to cancer can be treated and controlled. No cancer patient should suffer with uncontrolled pain! But, many people don t get the pain relief they need. This program will help you learn about cancer-related pain so that you get the most relief possible. Reading this booklet can help you: Work with your health care team to find the best ways to control pain Understand the types of cancer-related pain Learn about different types of pain medicines and their responsible use Know about other ways to help manage pain 2011 ACS No. 0171.02