Survivors sometimes experience ongoing pain after cancer treatment. Knowing what the causes are and being able to describe your symptoms to your health care team can help you manage chronic pain.
Chronic Pain: Detailed Information
This information is meant to be a general introduction to this topic. The purpose is to provide a starting point for you to become more informed about important matters that may be affecting your life as a survivor and to provide ideas about steps you can take to learn more. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Suggestions and Additional Resources sections for questions to ask and for more resources.
Many cancer survivors experience pain during their treatment. Most find ways to manage their pain with the help of their health care team. However, there are some who may continue to have pain even after their treatments have ended. Their chronic (also called persistent) pain may be mild or severe, and may affect quality of life. The good news is that there are now many methods of treatment that can greatly reduce, or even eliminate, most pain.
Be sure to tell your health care team if you are having pain—even if they do not ask about it. Pain should not prevent you from going about your daily routine and doing the things in life that are important to you. There are many ways to manage pain and lessen the effect it has your life. Work with the members of your health care team to set goals for pain control. You do not have to live your life in pain.
Why do some survivors experience chronic pain?
Not every survivor will experience chronic pain. However, some do, and the causes may vary. For example, chronic pain can result from the treatment of cancer or because the cancer has metastasized or spread to other parts of the body. Survivors who have had breast, prostate, lung, kidney or colorectal cancer may have pain because cancer has spread (metastasized) to the bones. Bony metastases are the most common cause of pain in advanced cancer.
Peripheral neuropathy, due to injury to nerves, may result from treatment with chemotherapeutic agents or from surgery or radiation treatments. Peripheral neuropathy can cause pain, tingling, burning, numbness or weakness that often begins in the hands or feet. In many cases, the symptoms caused by this condition will go away when cancer treatment stops. However, if the nerves become permanently damaged, the symptoms of peripheral neuropathy may persist. Chemotherapy medications may cause peripheral neuropathy, such as Taxol, Vincristine, Taxotere, Oxaliplatin and Cisplatin. Talk with your health care provider if you have concerns about possible side effects with your medication.
Steroids taken as part of cancer treatment may lead to chronic (persistent or long-term) bone pain. Steroids can cause the bones to grow weaker, leading to thinning of the bones (osteoporosis), and even painful bones. Talk with your health care team if you took steroids during your cancer treatment to find out if you might be at risk for chronic pain that can be caused by these medications.
Radiation therapy and surgery can also lead to a variety of acute (rapid onset, severe and short term) and chronic pain problems. Studies have shown that inadequately treated pain immediately following surgery is a major risk factor for delayed recovery and may result in the development of chronic pain problems.
What do the members of the health care team need to know?
Be sure to tell your health care provider if you experience a new pain or if your pain changes and feels different to you. Also, let them know as soon as possible if you develop painful swelling (lymphedema) in an arm or leg. Contact your health care team right away if you have new or worsening pain, numbness, tingling or a burning sensation in your hands or feet. In addition, let your provider know if your current pain medications stop working or are not working as well as they once did.
If you have pain problems, contact your doctor or other members of your health care team right away. It is important to get the best treatment possible. If your pain becomes severe, it can become more difficult to manage.
Keep a record of pain symptoms
Write down important information about your pain. Take this information to your appointments with your health care provider Include information about:
- New or different pain
- Long-term or constant pain
- Pain that continues after treatment
- Pain that feels different than what you have had before
- Pain and swelling in an arm or leg
- Pain, numbness, tingling or a burning sensation in your hands or feet
Your provider needs enough information to correctly assess your pain situation. Many providers ask patients to rate their level of pain using a pain scale. A rating of zero means no pain, and a rating of 10 stands for the highest level of pain. This rating method of keeping track of your pain gives the health care provider a better idea of the level of discomfort.
Pain can affect your ability to sleep, eat, work and spend time with loved ones and friends. Tell your health care provider how the pain is affecting your life. Describe how it interferes with your activities. Relief from pain can positively affect your overall health, strength and ability to heal properly. A provider may try several methods to find what works best to relieve your pain.
When you talk with your provider about pain symptoms, he or she should ask questions about the nature and frequency of your pain. Tests may need to be done to identify the cause of the problem. It is important that the members of your health care team listen to you.
You deserve to receive good pain care. Be certain that your health care provider has the experience and skills to treat your specific conditionSome nurses and doctors specialize in managing pain, such as physiatrists and anesthesiologists. If you think your provider is not able to effectively manage your pain, ask for a referral to a pain specialist.
The American Pain Foundation provides important information about pain care and support. They have also developed a Pain Care Bill of Rights as a patient guide. Call their toll-free number (1-888-615-7246) or go online www.painfoundation.org.
What can be done to manage pain?
There are things your health care team can do to help reduce or eliminate pain. Good pain management requires that you work together with your health care team.
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Cancer pain is often treated with one or more medications. If you have concerns about taking certain treatments, discuss these with your health care provider and pharmacist. Your health care team will want to address your concerns while effectively treating your pain.
There are many medications available to treat pain. Work with your health care provider to find the best treatment for your symptoms. Ask about long-term medication usage and side effects, such as allergies, constipation, sedation, memory impairment, or other reactions. Also, ask your provider about possible side effects of long-term use of even over-the-counter medications.
- For mild pain, medications such as acetaminophen or non-steroidal anti-inflammatory drugs (NSAIDs) may provide relief. Some of these drugs such as ibuprofen or naproxen can be purchased without a prescription.
- For moderate pain, medications that combine an opioid (sometimes called a narcotic) such as hydrocodone or oxycodone with acetaminophen or aspirin may be needed. Vicodin and Percocet are examples of these combination drugs. The dose of these combination drugs is limited by the toxicity of the acetaminophen or aspirin.
- For severe pain, medications that contain an opioid only (sometimes called a narcotic) such as morphine, oxycodone, fentanyl or methadone are usually needed. These narcotic medications may be given by either oral or intravenous routes (or sometimes by both routes).
- Other types of medications may be important for the treatment or management of neuropathic pain, which can be caused by damage to your body’s nerves. These are medications with primary uses for other conditions, but they are sometimes effective for certain kinds of pain. Always talk with your health care provider about the possible side effects of medications.
- Antidepressants medications, including amitriptyline and duloxetine, can be very helpful in managing chronic pain.
- Antidepressants medications, including amitriptyline and duloxetine, can be very helpful in managing chronic pain.
- Gabapentin and pregabalin are chemically related drugs that were originally developed for the treatment of epilepsy, but can also be prescribed for chronic pain symptoms, including, especially, neuropathic pain caused by nerve injury.
- Topical anesthetics, such as lidocaine pain patches, may also be helpful in some cases.
- Bone pain associated with metastatic cancer can often be effectively treated with the bone-strengthening drugs known as bisphosphonates, with steroid medications, and with hormone blocking medications (in addition to radiation therapy, and in some cases, surgery, or a combination of these approaches).
- Complementary and Alternative Pain Relief Treatment Options
Stress can make pain worse. It can also lessen the effect of pain management medications. Sometimes a health care provider may recommend counseling to help a patient cope with their pain or other distressing symptoms. This may lessen the pain. It may also help improve the effectiveness of the pain medication.
Other types of treatment may be used along with pain medications to provide relief. These approaches are often referred to as complementary, alternative or holistic medicine. Some examples of these types of treatments are massage, acupuncture, meditation, biofeedback or hypnosis.
Talk with your health care team if you are interested in adding another method of treatment. Some health care professionals are not aware of many types of complementary and alternative (CAM) therapies. Others might think that these methods do not work. To learn more about these types of therapies, contact the National Cancer Institute at their toll-free number (1-800-422-6237) or go online to read about them at www.cancer.gov/cancertopics/factsheet/therapy/CAM
Your health care team also needs to know about supplements and herbs that you want to try. Some types of complementary therapies and alternative treatments can interfere with the cancer treatment that has been prescribed by your provider.
- Other Treatment Options
Pain medications are almost always needed when pain levels are moderate or severe. However, other treatments can bring added comfort, and reduce the stress that can actually make the pain experience worse.
For some types of pain, heating pads, hot or cold packs, and massage may be soothing, and can help to reduce the level of pain. Biofeedback is a method that uses the mind to help with pain. Breathing exercises, relaxation techniques, yoga, tai chi, qigong, visualization, meditation, or guided imagery exercises may also be effective. Sometimes, talking with friends, laughing, or listening to music can offer a helpful distraction from pain.
For severe pain, a technique called a nerve block is sometimes considered. This procedure may involve injecting a substance, such as alcohol, directly into or around a nerve, or around the spinal cord. These procedures block damaged nerves from sending pain signals to the brain, so that the pain will not be felt. Extreme cold or heat is now sometimes used in nerve blocks instead of drugs or chemicals. A nerve block can cause temporary muscle paralysis or numbness in the affected or surrounding area.
Nerve blocks may work to control pain for people who have advanced cancer or very painful nerve conditions. However, there may sometimes be serious complications associated with these procedures. Nerve blocks are not recommended for people with certain medical conditions. Talk with your health care provider about the benefits and risks before any treatment to decide what is best for your situation.
In patients who have bone pain or nerve pain caused by metastatic cancer, radiation therapy, surgery and steroid medications may also be very effective in relieving symptoms.
Every survivor is different and each responds differently to pain management strategies. Open communication with your health care team can help you decide together what will work best to manage your pain.
Peggy Flood, RN, MS, AOCN
NCCN. Clinical Practice Guidelines in Oncology. Adult Cancer Pain.V.2.2011. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp
American Cancer Society. A Guide to Pain Control. Atlanta: American Cancer Society, 2001.
Cherny, Nathan. "Cancer Pain: Principles of Assessment and Syndromes". Principles & Practice of Palliative Care & Supportive Oncology 2nd Edition. Ed. Ann M. Burger, Russell K. Portenoy, David E. Weissman. Philadelphia: Lippincott Williams & Wilkins, 2002.
Dillard, J., N., The Chronic Pain Solution, Your Personal Path to Pain Relief. New York: Bantam, 2002.
McCaffery, Margo, Pasero, Chris. Pain: Clinical Manual 2nd Edition. St. Louis: Mosby, 1999.
Rosenfeld, A. The Truth about Chronic Pain, Patients and Professionals on How to Face it, Understand It, Overcome It. New York: Basic Books, 2003.
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Chronic Pain: Suggestions
The suggestions that follow are based on the information presented in the Detailed Information document. They are meant to help you take what you learn and apply the information to your own needs. This information is not intended nor should it be interpreted as providing professional medical, legal and financial advice. You should consult a trained professional for more information. Please read the Additional Resources document for links to more resources.
- Always prepare for appointments with members of your health care team.
- Use a notebook or journal, such as the LIVESTRONG Guidebook Planner and Journal or the LIVESTRONG Cancer Guide iPad app, to keep track of information about your pain.
- Write down pain information such as a description of the pain level, when the pain occurred, how long it lasted, and what worked (and did not) to provide pain relief.
- Talk to your health care team about the benefits and risks of medications and other treatments prescribed for pain.
- Keep track of any medication you take for pain including the name, dosage and any reactions you may have.
- Ask your health care team about alternative or complementary therapies.
- Bring pain information to your appointment along with all of your medication bottles.
- Be certain that all of your health care providers are aware of the medications you are taking, including vitamins and over-the-counter medications.
- Take notes during medical appointments, and write down your next appointment date.
- Bring extra copies of important documents with you to give to the health care team (or email, fax or mail these documents in before the appointment).
- Medications are commonly prescribed by health care providers to help control pain. It is important to understand as much as you can about the medications you are taking. Ask questions about medications such as:
- What is the name of the medication?
- How much should I take (dosage and strength)?
- When should I take this medication?
- Should I eat before I take it?
- Does this medication have any side effects?
- Will this medication interfere or react with other medications I take?
- Ask your health care provider questions about pain medications, such as:
- What pain medications are available for this type and stage of cancer?
- Are there likely to be side effects to the treatment prescribed for pain?
- Could there be interactions with other medications?
- Do you recommend any other treatments?
- Are there any concerns about trying different treatments?
- Give your health care provider specific information about your pain, including:
- Where the pain is located
- How much it hurts (mild, moderate or severe)
- When you experience the pain
- What seems to lessen or increase the pain
- How often you have pain
- How long the pain lasts
- How much any current pain medication helps
- Whether the pain affects your ability to sleep, eat or do daily activities
- Ask yourself questions to find out whether your pain is being managed well such as:
- Are your reports of pain are taken seriously by your health care team?
- Has your health care provider told you what may be causing your pain?
- Have you been told about all of the pain treatment options?
- Do you understand the benefits and risks of each treatment option?
- Are you involved in decisions about managing your pain?
- Have you been referred to a pain specialist for pain that is ongoing?
- Keep track of all medications, over-the-counter medicines, and vitamins or supplements that you take:
Some of the things that may help you include pill dispensers, lists, and asking a family member or friend to help you keep track of what you are taking. Ask your health care team about complementary or alternative therapies.
- Complementary or alternative therapies can be used along with medications to help you manage your pain. Some complementary therapies you may want to discuss with your health care team:
- Diet and nutrition
- Herbs, vitamins and minerals
- Tai Chi
- Spiritual care
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Chronic Pain: Additional Resources
The previous sections of this document provide detailed information, suggestions, and questions to ask related to this topic. This section offers a listing of additional resources that are known to provide support and quality services that may be helpful to survivors during the cancer journey.
LIVESTRONG Cancer Navigation Center
||1.855.220.7777 (English and Spanish)
||Navigators are available for calls Monday through Friday, 9 a.m. to 5 p.m. (Central Time). Voicemail is available after hours.
The Navigation Center provides free, confidential one-on-one support to anyone affected by cancer. This is not a medical facility, but rather a center that provides the following support services:
- Emotional Support—assistance coping with a cancer diagnosis, help accessing support groups, as well as peer-to-peer connections
- Fertility Risks and Preservation Options—information on fertility risks and help accessing discounted rates for fertility preservation options
- Insurance, Employment and Financial Concerns—information on employment rights and benefits, financial assistance and debt management, including insurance and billing issues as well as medication co-pay assistance
In addition to professional cancer navigators on staff, LIVESTRONG
partners with specialty organizations such as Patient Advocate Foundation, Imerman Angels, Navigate Cancer Foundation and EmergingMed to provide support services.
American Cancer Society (ACS)
||Submit questions in English or Spanish from the “Contact Us” page.
||TTY for deaf or hard of hearing callers: 1-866-228-4327
The American Cancer Society (ACS) offers information about many of the challenges of cancer and survivorship. You can search for information by cancer type or by topic. ACS provides a list of support groups in your area. ACS can connect you to support and services in your area. You can join online groups and message boards. Some information on the website is available in Spanish, Chinese, Korean and Vietnamese. ACS specialists can answer questions 24 hours a day by phone or email.
The American Pain Foundation
The American Pain Foundation is an independent nonprofit 501(c)3 organization serving people with pain by providing information, advocacy, and support. The APF mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating removing barriers and increasing access to effective pain management. The APF provides information that can be used to discuss pain concerns with your health care provider.
National Cancer Institute (NCI) — National Institutes of Health
||The LiveHelp online chat service is available Monday through Friday from 8:00 a.m. to 11:00 p.m. Eastern Time.
||Send an email through the website.
||Information specialists answer calls Monday–Friday, 8:00 a.m. to 8:00 p.m. Eastern Time.
The National Cancer Institute's website provides accurate information about the challenges cancer can bring. You can search for information by cancer type or topic. You can find information about treatment and financial and insurance matters. You can also learn how treatments in development work and search for a clinical trial in your area. This site also has a good dictionary of cancer terms, drug information and other publications. Cancer information specialists can answer your questions about cancer and help you with quitting smoking. They can also help you with using the website and can tell you about NCI’s printed and electronic materials. The knowledgeable and caring specialists have access to comprehensive, accurate information on a range of cancer topics, including the most recent advances in cancer treatment. The service is confidential, and information specialists spend as much time as needed for thorough and personalized responses.
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