Cancer pain: A guide for you and your family

Having cancer does not always mean having pain. For those with pain, there are many different kinds of medicines, ways to receive the medicine, and non-medicine methods that can relieve the pain you may have. You should not accept pain as a normal part of having cancer. When you are free of pain, you can sleep and eat better, enjoy the company of family and friends, and continue with your work and hobbies.

Important facts about cancer pain treatment

Cancer pain can almost always be relieved

Controlling your cancer pain is part of the overall treatment for cancer

Preventing pain from starting or getting worse is the best way to control it

Telling the doctor or nurse about pain is not a sign of weakness

You have a right to ask for pain relief. Not everyone feels pain in the same way. There is no need to be "stoic" or "brave" if you have more pain than others with the same kind of cancer. In fact, as soon as you have any pain you should speak up. Remember, it is easier to control pain when it just starts rather than waiting until after it becomes severe.

People who take cancer pain medicines, as prescribed by the doctor, rarely become addicted to them

Addiction is a common fear of people taking pain medicine. Such fear may prevent people from taking medicine. Or it may cause family members to encourage you to "hold off" as long as possible between doses. Addiction is defined by many medical societies as uncontrollable drug craving, seeking, and use. When opioids (also known as narcotics) - the strongest pain relievers available - are taken for pain, they rarely cause addiction as defined here. When you are ready to stop taking opioids, the doctor gradually lowers the amount of medicine you are taking. By the time you stop using it completely, the body has had time to adjust. Talk to your doctor, nurse, or pharmacist about how to use pain medicines safely and about any concerns you have about addiction.

Most people do not get "high" or lose control when they take cancer pain medicines as prescribed by the doctor

Some pain medicines can cause you to feel sleepy when you first take them. This feeling usually goes away within a few days. Sometimes you become drowsy because, with the relief of the pain, you are now able to catch up on the much needed sleep you missed when you were in pain. On occasion, people get dizzy or feel confused when they take pain medicines. Tell your doctor or nurse if this happens to you. Changing your dose or type of medicine can usually solve the problem.

Side effects from medicines can be managed or often prevented

Some medicines can cause constipation, nausea and vomiting, or drowsiness. Your doctor or nurse can help you manage these side effects. These problems usually go away after a few days of taking the medicine. Many side effects can be managed by changing the medicine or the dose or the times when the medicine is taken.

Your body does not become immune to pain medicine

Stronger medicines should not be saved for "later." Pain should be treated early. It is important to take whatever medicine is needed at the time. You do not need to save the stronger medicines for later. If your body gets used to the medicine you are taking, your medicine may not relieve the pain as well as it once did. This is called tolerance. Tolerance is not usually a problem with cancer pain treatment because the amount of medicine can be changed or other medicines can be added.

When pain is not treated properly, you may become:

• Tired
• Depressed
• Angry
• Worried
• Lonely
• Stressed

When cancer pain is managed properly, you can:

• Enjoy being active
• Sleep better
• Enjoy family and friends
• Improve your appetite
• Enjoy sexual intimacy
• Prevent depression

Developing a plan for pain control

The first step in developing a plan is talking with your doctor, nurse, and pharmacist about your pain. You need to be able to describe your pain to your health professionals as well as to your family or friends. You may want your family or friends to help you talk to your health professionals about your pain control, especially if you are too tired or in too much pain to talk to them yourself.

Using a pain scale is helpful in describing how much pain you are feeling. 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 pain that is getting worse. A 10 means the pain is as bad as it can be.

You may wish to use your own pain scale using numbers from 0 to 5 or even 0 to 100. Let others know what pain scale you are using and use the same scale each time, for example, "My pain is a seven on a scale of nought to 10."

You can use a 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.

Tell your doctor, nurse, pharmacist and family or friends:

• Where you feel pain.
• What it feels like - sharp, dull, throbbing, steady.
• How strong the pain feels.
• How long it lasts.
• What eases the pain, what makes the pain worse.
• What medicines you are taking for the pain and how much relief you get from them.

Your doctor, nurse, and pharmacist may also need to know:

• What medicines you are taking now and what pain medicines you have taken in the past, including what has worked and not worked.
• Any known allergies to medicines.

Questions to ask your doctor or nurse about pain medicine:

• How much medicine should I take?
• How often?
• If my pain is not relieved, can I take more?
• If the dose should be increased, by how much? Should I call you before increasing the dose?
• What if I forget to take it or take it too late?
• Should I take my medicine with food?
• How much liquid should I drink with the medicine?
• How long does it take the medicine to start working (called "onset of action")?
• Is it safe to drink alcoholic beverages, drive, or operate machinery after I have taken the pain medicine?
• What other medicines can I take with the pain medicine?
• What side effects from the medicine are possible and how can I prevent them?

Keeping track of details about the pain

You may find it helpful to keep a record or a diary to track the pain and what works best to ease it. You can share this record with those caring for you. This will help them to figure out what method of pain control works best for you. Your records can include:

• Words to describe the pain.
• Any activity that seems to be affected by the pain or that increases or decreases the pain.
• Any activity that you cannot do because of the pain.
• The name and the dose of the pain medicine you are taking.
• The times you take pain medicine or use another pain-relief method.
• The number from your rating scale that describes your pain at the time you use a pain-relief measure.
• Pain rating one to two hours after the pain-relief method.
• How long the pain medicine works for.
• Pain rating throughout the day to record your general comfort.
• How pain interferes with your normal activities, such as sleeping, eating, sexual activity, or working.
• Any pain-relief methods other than medicine you use such as rest, relaxation techniques, distraction, skin stimulation, or imagery.
• Any side effects that occur.

What if I need to change my pain medicine?

If one medicine or treatment does not work, there is almost always another one that can be tried. Also, if a schedule or way that you are taking medicine does not work for you, changes can be made. Talk to your doctor or nurse about finding the pain medicine or method that works best for you. You may need a different pain medicine, a combination of pain medicines or a change in the dose of your pain medicines if:

• Your pain is not relieved.
• Your pain medicine does not start working within the time your doctor said it would.
• Your pain medicine does not work for the length of time your doctor said it would. You have breakthrough pain, usually brief episodes of pain which occur despite sticking to your regular pain medication plan. You have side effects.
• You have serious side effects such as trouble breathing, dizziness, and rashes. Seek medical advice straight away if these occur. Side effects such as sleepiness, nausea, and itching usually go away after your body adjusts to the medication. Let your doctor know if these bother you.
• The schedule or the way you are taking the medicine does not work for you.
• Pain interferes with your normal activities, such as eating, sleeping, working, and sexual activity.

To help make the most of your pain control plan:

• Take your pain medicine on a routine (by the clock) to help prevent persistent or chronic pain.
• Do not skip doses of your scheduled medicine.
• Remember that once you feel the pain, it is harder to control.
• If you experience breakthrough pain, use your short-acting medicine as your doctor suggests.
• Don't wait for the pain to get worse - if you do, it may be harder to control.
• Make sure that only one doctor prescribes your pain medicine. If another doctor changes your medicine, the two doctors should discuss your treatment with each other.
• Never take someone else's medicine. Medicines that worked for you in the past or that helped a friend or relative may not be right for you.
• Remember that pain medicines affect different people in different ways. A very small dose may work for you, while someone else may need to take a much larger dose to obtain pain relief.
• Remember, your pain control plan can be changed at any time.