Unfortunately, many people have heard the stories about people suffering from untreated cancer pain…and stories about what pain medications can do…and about people whose doctors told them that nothing could be done for pain…about people "so drugged" that they couldn't communicate…and so forth. Like all such tales, there was probably a kernel of truth in them once upon a time — but in recent years, the techniques and medications available for all aspects of cancer pain have come a long way. Today patients can have their pain well-managed, improving quality of life significantly.

It's useful to dispel the myths that sometimes stand in the way of excellent pain management.

Addiction Fiction

One of the most enduring myths about pain — and a myth that has undoubtedly caused a great deal of unnecessary patient suffering — is that taking opioid medications like morphine and others, turns patients into "drug addicts."

The reality is quite different. There are many studies done by respected health care experts that show that people taking opioids for pain management do not become addicts. This is true of children and teenagers taking pain medications, as well.

By definition, an addict is a person who craves and uses a substance for non-medical reasons. An addict's motivations are not pain control, but usually pleasure of some kind. People taking pain medications don't get "high" from their medications — and the only pleasure they feel is relief from pain and an improved quality of life

What people taking pain medication develop is called physical dependence — meaning that your body has adapted over time to the medication, and that it will take time to have your body readjust to it not being present if it is no longer needed. Other medications, such as beta blockers and corticosteroids, to name a few, also create physical dependence, and require a time period of gradually reducing doses to readjust the body if the medication is no longer needed.

Physical dependence is normal and expected when you or your ill child take opioid pain medications, and if the medication is no longer needed, your health care team will work with you to gradually taper off the medications over days or weeks. This prevents side effects and discomfort. Tapering allows the body to slowly readjust, without discomfort.

People taking opioid medications sometimes develop what is called tolerance, meaning that in some cases, a given dose of an opioid may no longer be sufficient to relieve pain well. Opioid medications that don't contain NSAIDs or other medications do not have "ceilings," meaning a maximum amount beyond which no more medication can be given. Developing tolerance is not a significant factor in achieving good pain control. And tolerance has nothing at all to do with "addiction." It is a usual and expected development in people taking opioid pain medications, and means only that as time passes, you may come to need a higher dose of pain medication to get pain relief — and that's fine.

Causes

There are two basic sources of pain in people fighting cancer.

1. Pain related to the cancer itself.
   This pain can be caused by the pressure of a tumor on one's organs, nerves and bones, or from obstructed blood vessels, possibly causing circulation problems.
   
   
   • Nocioceptive [no-see-oh-SEP-tive] pain — pain caused by damage to the body's tissues, bones, joints and muscles.
     
     
   • Neuropathic pain — pain caused by damage to the nerves.
     
     
2. Pain from treatment of cancer.
   Some aspects of cancer treatment can cause some pain. The most frequent causes are cancer surgery, chemotherapy and radiation. Pain from all three causes can be successfully treated.
   
   
   • Pain from surgery. Pain relating to surgery can occur immediately afterward, shortly afterward and even months or years later. Immediate post-operative pain may include discomfort from the incision and surgery itself, and may last for several days afterward. Sometimes following surgery — months or even years later — patients experience pain from adhesions (buildup of scar tissue) that form inside the area where surgery was performed. Also, some people experience neuropathic pain following surgery, when nerves have been damaged by the surgery. To read more about managing post-surgical pain, please see Treating Pain: Surgery.
     
     
   • Pain from chemotherapy is caused by side effects like mouth sores, neuropathy, diarrhea, constipation and nausea and vomiting. Click on any of these to learn how this pain is managed. Pain and discomfort from side effects can be well-managed by you and your health care team working together. Some pain related to chemotherapy, especially neuropathy, can linger on well after chemotherapy ends.
     
     With chemo comes what many patients dread: injections. That is why some patients, especially those who will receive numerous cycles of chemotherapy, receive a catheter (or central line) — a thin tube placed in a large vein which remains in place as long as needed. Some kinds of catheters you may have include a PICC (peripherally inserted central line), a Hickman catheter or a Groshong catheter. Once in place (a procedure usually done in outpatient surgery) the catheter becomes the way to take blood samples, administer chemotherapy and give medications — ending the need for injections for these purposes. Sometimes this catheter can be attached to a port — a small disc placed under the skin, which can also be used as long as needed. Ports require a single needle stick to access for the purpose of drawing blood or giving infusions of medications. Both ports and catheters are usually placed in a large vein in the chest, but these can be placed elsewhere if needed.
     
     
   • Pain from procedures done as part of treatment can cause pain. These include procedures such as bone marrow aspirations, laser treatment, lumbar punctures and biopsies.
     
     
   • To help you understand what sensations, including pain, are an expected part of a procedure, ask the health care provider in charge of the procedure to spend a minute describing what will happen each step of the way. Understanding what is coming and to be expected can help make a procedure less difficult to endure.
     
     
   • If pain or discomfort is an expected part of a procedure, don't hesitate to ask for pre-medication, to make the procedure less uncomfortable. You have a right to as stress- and pain-free an experience as possible. "Toughing it out" is not necessary.
     
     
   • Let the doctor or nurse know if you are currently taking any pain medication (including over-the-counter kinds) before you have any procedure. This will have an effect on selection of medication and dosage for your procedure.
     
     
   • If your pain increases during the procedure, you have the right to ask for more medication to be more comfortable.
     
     
   • If you are very nervous facing a particular procedure, you should ask for medication to help you relax, before the procedure starts.
     
     
   • Local anesthetics, general anesthesia and pain medications can all be given before and after procedures, as needed.

• Radiation treatment can also cause discomfort — irritated, red skin and sometimes tissue and nerve damage. Your health care provider can recommend special creams to ease irritation from radiation; do not use the usual over-the-counter moisturizer or cream for this purpose.
  
  
  • Fatigue, while not painful, is also a common side effect of radiation. See the section on fatigue for more information.
    
    
  • Always avoid exposure to the sun while having radiation treatment. Your skin in the radiated area is very sensitive.

Communicating About Pain

Your role as partner in your care. It can't be said often enough: if you are in pain, you must be a partner with your health care team to achieve the most effective treatment for you or your ill child or family member. You know best what is being experienced — and it is your responsibility to communicate that, in as much detail as possible.

Take a moment to consider your attitudes about pain, and how they may affect your ability to communicate well with your health care team. Here are some patient views that can interfere with clear communications with the care team:

• Do you assume your health care team knows there is pain involved with your treatment and cancer and that they will provide relief if needed?
  
  
• Do you tend to understate the amount of pain you have because you fear the side affects of stronger medication?
  
  
• Are you quiet about the pain you feel, because you don't want to sound like a whiner or weakling?
  
  
• Do you worry that that pain medications will interfere with your ability to think clearly and make decisions about your care?
  
  
• Are you concerned that pain medications will interfere with your life too much, causing problems at home and at work;
  
  
• Have you taken pain medications in the past, without much success — and think they may not work on you?
  
  
• Are you afraid you may become addicted to pain medication?

These are just some of the attitudinal barriers that can arise between patients and their health care team. All of these attitudes will get in your way, keep you in pain, and as a result, interfere with your quality of life.

Kinds of pain

Some pain you may experience is acute — meaning pain that usually begins suddenly, is often sharp and demands attention. Acute pain tells you, "take action now" to get relief. Acute pain is hard on the body, sometimes causing raised blood pressure and muscle tension throughout the body. Acute pain shouts for attention, and demands immediate, aggressive relief.

Chronic pain is pain that lasts over days, weeks and longer, and is present much of the time. It can be mild, moderate or severe. If you experience continuing pain over hours and days, this pain can be called chronic. While it might not always be possible to eliminate every bit of chronic pain, it is entirely reasonable to expect that your care providers will be able to decrease the frequency and intensity of our chronic pain, so you have better control and quality of life.

Whether acute or chronic, describing your pain (or that of your ill child or loved one) as clearly as possible will help your health care team treat it by learning the cause and taking appropriate steps to relieve it.

Describing your pain. Here are some terms that may assist you in talking about the pain you are feeling:

Key information you should share with your health care team — every time you meet with them, if any pain is present — includes:

• Where your pain is located?
  
• How does the pain feel?
  
• How often does the pain occur and how long does it last? (including times of day)
  
• How bad is the pain at its worst?
  
• What appears to trigger the pain, get it started?
  
• What makes the pain worse?
  
• What seems to ease the pain?
  
• Are your present pain medications helping manage the pain? If so, how well?
  
• Are your pain medications causing any side effects, such as constipation or drowsiness?
  
• What impact does the pain have on your daily life? Does it interfere with your usual activities? Driving? Dressing? Working? Sleeping? Exercise?
  
• How is the pain affecting you emotionally?
  
• What do you believe is causing the pain?

A special note: remember that pain is best and most easily brought under control when it is treated promptly, when it begins. It is not helpful in any way to "wait and see" if pain will perhaps go away. Instead, if you experience pain, let your health care team know right away so treatment can begin.

Pain Assessment Scales. Sometimes health care providers will ask you to use a simple assessment scale to help them fully understand your pain. These assessment scales include:

1. A numerical scale, asking you to indicate how much pain you are having by number from 0 to 10:
   
   

   No Pain									Worst pain
   0	1	2	3	4	5	6	7	8	9	10

   
   
2. A categorical scale, asking you to choose one of four categories to describe your pain:

   None (0)    Mild (1-3)    Moderate (4-8)    Severe (7-10)

3. A visual analog scale is a simple line, with the far left side meaning no pain, and the far right side meaning the worst pain imaginable. You'll be asked to mark the line where your pain is.

   No pain________________________________________Worst Pain

Whatever scale is chosen by you and your health care team, the same scale should be used each time your pain is assessed, forming a clear and accurate picture of your pain and its management.

Pain Diary

To help communicate information about your pain, your health care team may ask you to keep a "pain diary" — a simple log where you note the time of day, how much pain you have — usually based on a numerical scale of 0-10, with 0 being no pain and 10 being a great deal of pain, the activity you were doing when you felt the pain, medications you take, if any, at each interval, how well the medications worked to relieve your pain, and comments. The diary approach is especially helpful when you are just beginning to take pain medication regularly.

More information your health care team will need to know in assessing your pain:

• The names, amounts of medication and frequency (how many times a day, and how much each time) of all medications you take — including
  
  
  • prescription medications for your cancer treatment
  • prescription medications for other unrelated conditions you may have
  • over-the-counter pain medications for pain
  • over-the-counter medications of any kind
  • any vitamins you take
  • any herbal preparations you take
  
  The reason for all of this information is to make sure that other things you take are not causing interactions with medications provided to help treat your cancer. Medications, including herbals, interact — and your health care team can work with you to prevent interactions that can cause harm.
  
  
• Information about other pain-relieving steps you take to ease discomfort, including the use of heat, cold, massage, imagery, meditation and so forth.
  
  
• Information about your medical history. This is important in working to assess possible causes of your pain. Include information about any recent surgeries or procedures you may have had, medications you may have received for these, and review your more distant medical history, including surgeries and chronic conditions such as arthritis, asthma and diabetes. Let your team know if you have ever had an allergic reaction to any medication or treatment, such as itching, rash, shortness of breath, wheezing and watering eyes.
  
  
• Other details about your life, such as those listed below. Please understand that your health care provider is not being nosy, but rather seeks to understand how you live and the possible impact your lifestyle may be having on your pain:
  
  
  • If you exercise, what exercises do you do? How frequently?
    
    
  • If you drink alcohol, how much do you consume a day?
    
    
  • Does your work — if you are working during treatment — require you to stand or do other significant physical activity? If so, what is that?
    
    
  • Does any aspect of your daily life require you to lift heavy objects, such as bags of groceries, small children, pets?
    
    
  • Are you getting enough sleep to feel rested? Is the pain interfering with your rest?
    
    
  • Do you have food allergies of any kind? Any other allergies which require you to avoid contact or for which you routinely take medication?
    
    
  • Do you use "street drugs," such as marijuana, heroin, cocaine, and others? This information can be kept confidential, but the information is very important to your health care team in terms of selecting medications and treating you safely.
    
    
  • Anything else your care team needs to know to treat your pain effectively.
    
    
• Your past experience with pain medications.
  
  
  • Have you been successfully medicated for pain in the past? What was used?
    
    
  • Have some pain medications not been effective in your treatment in the past? Let your care team know what those were.

Is your pain being well-assessed?

While the pain management skills of health care professionals has increased in recent years, and while a great deal of attention has been focused on the importance of effective pain management, it is still possible that some health care providers aren't doing all that they might in assessing and managing pain. Some warning signs that your pain isn't receiving sufficient attention include:

• No one mentions your pain unless you bring it up. At your regular meetings with your health care team, no one asks about your pain levels.
  
  
• You have a sense that the health care team does not entirely believe and/or understand what you tell them about your pain.
  
  
• Questions about your pain, when asked, are general and incomplete. A comprehensive assessment is not performed.
  
  
• If pain medications given to you aren't effective, you are told that little else can be done for your pain. There appears to be little interest in working with you to control your pain.
  
  
• You don't receive detailed instruction about managing your pain.

These may be signs that you must ask for additional assistance in pain management. Most hospitals can provide additional help. Some have pain specialists on staff, and you should ask for a consultation with this individual. If there is no pain specialist available at the facility you go to, ask for a referral to pain experts elsewhere. Whatever you do, you should not just "give up," and allow your pain to continue. Correct and successful management of your pain — which is your right, and which is possible — will have a direct impact on every aspect of your life.

Finding Expert Care

The first place to turn for pain relief is, of course, the health care team providing your care. The hospital where you are treated is likely to have one or more staff members who are expert in managing cancer pain, and this, with your oncologist, should be your first line of assistance.

However, if your pain is not properly treated; if you continue to be in pain despite the efforts of your immediate health care team; if they cannot or show reluctance to provide you with a referral to a cancer pain management specialist, it's time to look outside for help.

Some suggestions on ways to find expert pain management:

1. Locate the nearest major teaching hospital and/or a hospital affiliated with a medical school in your area. Almost all teaching hospitals have experts in pain. Ask your physician for a referral to the pain experts there — and if he or she is reluctant to provide a referral, many institutions today will see patients who refer themselves. If there is no facility like this available to you, your next best option will be contacting the largest area hospital near you for assistance.
   
   More and more hospitals and other health care facilities are establishing pain and palliative medicine centers. Palliative care is appropriate at any stage of an illness and specialists in this field are experts in pain and symptom management, as well as addressing emotional, social and spiritual issues that patients and families experience while coping with serious illness.
   
   What you are looking for at the teaching hospital is usually known as a multidisciplinary pain center — which generally includes patient care and a research component. Experts at such centers may include physicians, physical and occupational therapists, nurses specializing in pain management, pharmacists, psychologists, social workers and more. These people all work together to help manage patients' pain effectively. If possible, seek out a cancer pain or palliative care program, specifically. If you are seeking assistance for a child, you need to let the staff know this when you call.
   
   
2. Locate a multidisciplinary pain clinic in your area. These are similar to the multidisciplinary pain center, differing primarily in the fact that they do not conduct research. Many of these clinics are primarily focused on chronic pain of different kinds, and their emphasis may or may not include cancer pain. The best pain clinics involve a number of physicians and other experts that work together to treat pain. Before receiving treatment at this kind of facility, ask questions to determine the expertise of the staff in cancer pain; that the clinic has a wide range of experts; how the clinic works with patients; how they cooperate with your other physicians, such as your oncologist; and if they are available in emergency situations.
   
   
3. Seek referral information from local agencies, such as the American Cancer Society and state and county medical societies.
   
   
4. Contact your local hospice. Hospice physicians and nurses are experts in pain management, and can help you locate an expert in cancer pain management. You do not need to have a physician's referral or be a hospice patient to request information.
   
   
5. American Pain Foundation's website, www.painfoundation.org, has ample information for consumers on finding credible and competent pain specialists. They can be reached by phone, toll-free, at 1-888-615-PAIN (7246).

Financial Considerations

The financial burden of cancer can be heavy. Even with health insurance, there is considerable economic stress on patients and families, in the form of portions of medical expenses not reimbursed by insurers, the cost of medications, and time lost from work for both patients and caregivers.

For people with cancer who are coping with pain, the cost of medications may represent the most significant financial problem. If you are struggling financially, there are agencies — local, state and national — that can assist you.

Getting Help with Prescription Medication

• State assistance. In a small number of states (Connecticut, Delaware, Illinois, Maryland, Michigan, Missouri, New Jersey, New York, Pennsylvania, Rhode Island, Maine and Vermont) there are special pharmaceutical assistance programs that offer help in paying for medications. Each state has different eligibility requirements. Ask your area social worker or state agency in your community for assistance with these programs if you live in a state that has one.
  
  
• Pharmaceutical programs. A great many of the nation's pharmaceutical manufacturers have a program of some kind — often called "patient assistance programs" — that provide medications for people who cannot afford them any other way. All of these require your physician to apply on your behalf, and the amounts of coverage vary. Medications covered by these programs are listed on the Pharmaceutical Research and Manufacturers of America website, www.phrma.org, and the organization can be reached by phone at 800-PMA-INFO (800-762-4636). Begin to access this program by speaking with your physician.

Think Local

A good place to start for immediate information and assistance needs is with the oncology social worker in your hospital. He or she can provide information about organizations in your area and how they can assist you. Additionally, it may be worthwhile to talk with your hospital's business office to discuss options for payment.

Also, speak with your physician and your pharmacist about the possibility of taking pain medication that is relatively inexpensive. Whether or not this can be done will depend on your particular situation, but the conversation is worth having.

Do let your local pharmacy know that you will be taking opioid medications, and the details about what you will need. Some pharmacies don't regularly stock these medications and advance notice to yours will help ensure you get your medication in timely manner.

Don't fail to contact your local American Cancer Society office. While ACS does not generally provide financial support, they do offer a host of programs that might be helpful to you, if you are a low-income person, in finding ways to cover the cost of medication.

Other kinds of local volunteer agencies and service groups that may be helpful to you, in addition to area churches, synagogues, mosques and other houses of worship, include the Salvation Army, Catholic Charities, and Lions Clubs. There are others; see your Yellow Pages for more information.

Check with your local government for assistance. The right department in your community might be called something like the "Department of Social Services" or "Health and Human Services." In some communities, general assistance programs are available to help you with prescription medications, medical expenses, food and housing. Please note that in general, these services are only made available to people who do not qualify for help under Medicaid and other programs.

National Government Programs

• Medicaid is a federal-state health insurance program that offers services to people who cannot pay for them. What is offered varies from state to state, but many states do cover the cost of prescription medication. Look in your local telephone directory for the Medicaid office near you, or call nationally at 800-267-2323. You can also look online at www.cms.gov/Medicaid/ [Note: in California, this program is called Medical.]
  
  
• Medicare is the federal health insurance program for people who are 65 or older, and people of any age with certain disabilities. Medicare will pay for medications, generally, that are given in a hospital or doctor's office, or as part of the hospice benefit — but medications filled outside of these settings are not covered. Medicare may cover other kinds of treatment related to pain. Call 800-638-6833, or www.medicare.gov for information.
  
  
• The Social Security Administration is the government organization that provides Social Security and Supplemental Security Income. For information, call toll-free at 1-800-772-1213; or online at
  www.ssa.gov.
  
  
• To learn more about disability benefits available from Social Security: www.ssa.gov/dibplan
  
  
• For children, there is the State Children's Health Insurance Program (SCHIP) that offers free or inexpensive health insurance for the children of low-salary working parents with no access to insurance. Calling the main telephone number will get you referred to your state office:
  1-877-543-7669. Online: www.insurekidsnow.gov.
  
  
• Hill-Burton Program. This program provides federal dollars to approximately 1,800 hospitals nationwide, in return for which the hospitals are required to provide free or inexpensive care for people without resources to pay for it. Call 1-800-638-0742 to see if your hospital is a participant. Online: www.hrsa.gov.
  
  
• Veterans Health Benefits. Military veterans can receive a variety of health and medical care benefits. Call 1-800-827-1000 for information. Online information: www.va.gov.

Questions for Your Doctor

1. What do you think is the cause of my pain/my child's pain/my loved one's pain?
   
   
2. What medications do you think I will need for my pain?
   
   
3. How long is it likely that I will need these medications?
   
   
4. How will my medications be administered? Orally? Intravenously? Other ways?
   
   
5. How effective do you think these medications will be in managing my pain? What will be done if the medications are not very effective? Next steps?
   
   
6. Will these medications likely cause me to become constipated? If so, should I be given instructions on how to avoid constipation now, before I start the medications?
   
   
7. Will I be likely to experience any other side effects from my pain medication? How will these be managed?
   
   
8. Are any of these medications likely to cause me to become physically dependent on them? If so, how will we end my dependence on them if I no longer need them?
   
   
9. Will these medications make me drowsy? If so, for how long?
   
   
10. Are there any non-drug therapies I should try?
    
    
11. What information will you need from me to properly assess and manage my pain? How often should I be prepared to provide the information?
    
    
12. Will you use a pain assessment scale?
    
    
13. Do you want me to keep a pain diary?
    
    
14. If I don't feel that the pain management I have is working, will you provide me with a referral to pain management experts in the area?
    
    
15. Can you provide me with assistance in locating pharmaceutical company assistance programs to help pay for my medications?

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