National Cancer Institute

Support For People With Cancer

Pain Control

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

National Institutes of Health
For more information . . .

This booklet is only one of many free booklets for people with cancer.
Here are some others you and your loved ones may find useful:

• Biological Therapy: Treatments That Use Your Immune System

To Fight Cancer
• Chemotherapy and You
• Coping With Advanced Cancer
• Eating Hints for Cancer Patients
• If You Have Cancer: What You Should Know About Clinical Trials
• Radiation Therapy and You
• Taking Time
• Thinking About Complementary and Alternative Medicine
• When Cancer Returns

• When Someone You Love Is Being Treated for Cancer

• When Someone You Love Has Advanced Cancer

• When Your Parent Has Cancer

These free booklets are available from the National Cancer Institute
(NCI). NCI is a Federal agency that is part of the National Institutes of
Health. To order or download, call 1-800-4-CANCER (1-800-422-6237)
or visit www.cancer.gov. (See page 34 of this booklet for more resources.)

For information about your specific type of cancer, see NCI’s Physican
Data Query (PDQ®) database at www.cancer.gov. From the home page,
it is listed under “Cancer Topics.”

Product or brand names that appear in this booklet are for example
only. The U.S. Government does not endorse any specific product
or brand. If products or brands are not mentioned, it does not
mean or imply that they are not satisfactory.
 Pain Control
Support for People With Cancer

Cancer pain can be managed.

Having cancer doesn’t mean that you’ll have pain. But if you do, you can manage
most of your pain with medicine and other treatments.

This booklet will show you how to work with your doctors, nurses, and others to
find the best way to control your pain. It will discuss causes of pain, medicines,
how to talk to your doctor, and other topics that may help you.

Your “health care team” can help you manage

cancer pain.
In this booklet, your “health care team” can mean any of the professionals you see as
part of your medical care. These may include your oncologist, your family doctor,
nurses, physical therapists, pharmacists, oncology social workers, clergy members,
and others.

Read what you need.

Use this booklet in the way that works best for you. You may read it from
front to back. Or you may want to read different parts as you need them.

There is a list of resources toward the end of the booklet. There is also a page where
you can write down notes and keep track of the medicines you’re taking. This
section also includes a sample pain control record.

Words in bold are explained at the end of the booklet in “Words To Know.” They
include terms you might hear in doctors’ offices or hospitals.
 Table of Contents

1. What You Should Know About Treating Cancer Pain .....................1

2. Types and Causes of Cancer Pain ......................................................3

3. Talking About Your Pain....................................................................5

4. Your Pain Control Plan ......................................................................9

5. Medicines To Treat Cancer Pain ......................................................11

Questions to ask your health care team
about your pain medicine ..........................................................18

6. Medicine Tolerance and Addiction .................................................20

7. Other Ways To Control Pain ............................................................22

8. Your Feelings and Pain.....................................................................27

9. Financial Issues .................................................................................30

Reflection ...............................................................................................33

Resources ................................................................................................34

Pain Control Record ..............................................................................37

How to Use Imagery ..............................................................................39

Words To Know......................................................................................41

Before You Go to the Pharmacy ...........................................................44

“I thought that I had to live with the pain, but it got
to the point where I just couldn’t handle it anymore.
My doctor changed my medicines, which seems to be
working for me. I’m not saying that I’m always pain
free, but it’s a lot better now.” —John
CHAPTER 1

What You Should Know About

Treating Cancer Pain

You don’t have to accept pain.

People who have cancer don’t always have pain. Everyone is different. But if you do
have cancer pain, you should know that you don’t have to accept it. Cancer pain
can almost always be relieved.

The key messages we want you to learn from this booklet are:
■ Your pain can be managed.

■ Controlling pain is part of your cancer treatment.

■ Talking openly with your doctor and health care team will help them manage
your pain.

■ The best way to control pain is to stop it from starting or keep it from
getting worse.

■ There are many different medicines to control pain. Everyone’s pain control
plan is different.

■ Keeping a record of your pain will help create the best pain control plan
for you.

■ People who take cancer pain medicines as prescribed rarely become addicted
to them.

■ Your body does not become immune to pain medicine. Stronger medicines
should not be saved for “later.”

1
 Pain specialists can help.
Cancer pain can be reduced so that you can enjoy your normal routines and sleep
better. It may help to talk with a pain specialist. These may be oncologists,
anesthesiologists, neurologists, surgeons, other doctors, nurses, or pharmacists.
If you have a pain control team, it may also include psychologists and social workers.

Pain and palliative care specialists are experts in pain control. Palliative care
specialists treat the symptoms, side effects, and emotional problems of both cancer
and its treatment. They will work with you to find the best way to manage your
pain. Ask your doctor or nurse to suggest someone. Or contact one of the following
for help finding a pain specialist in your area:

■ Cancer center

■ Your local hospital or medical center

■ Your primary care provider

■ People who belong to pain support groups in your area

■ The Center to Advance Palliative Care, www.getpalliativecare.org

(for lists of providers in each state)

When cancer pain is not treated

properly, you may be:

■ Tired

■ Depressed

■ Angry When cancer pain is managed

■ Worried properly, you can:
■ Lonely
■ Enjoy being active
■ Stressed
■ Sleep better

■ Enjoy family and friends

■ Improve your appetite

■ Enjoy sexual intimacy

■ Prevent depression

2
CHAPTER 2

Types and Causes of Cancer Pain

Cancer pain can range from mild to very severe. Some days it can be worse than
others. It can be caused by the cancer itself, the treatment, or both.

You may also have pain that has nothing to do with your cancer. Some people
have other health issues or headaches and muscle strains. But always check with
your doctor before taking any over-the-counter medicine to relieve everyday aches
and pains.

Different types of pain

Here are the common terms used to describe different types of pain:

■ Acute pain ranges from mild to severe. It comes on quickly and lasts a
short time.

■ Chronic pain ranges from mild to severe. It either won’t go away or comes
back often.

■ Breakthrough pain is an intense rise in pain that occurs suddenly or is felt

for a short time. It can occur by itself or in relation to a certain activity. It
may happen several times a day, even when you’re taking the right dose of
medicine. For example, it may happen as the current dose of your medicine is
wearing off.

What causes cancer pain?

Cancer and its treatment cause most cancer pain. Major causes of pain include:

■ Pain from medical tests. Some methods used to diagnose cancer or see
how well treatment is working are painful. Examples may be a biopsy, spinal
tap, or bone marrow test. If you are told you need the procedure, don’t let
concerns about pain stop you from having it done. Talk with your doctor
ahead of time about what will be done to lessen any pain you may have.

■ Pain from a tumor. If the cancer grows bigger or spreads, it can cause pain
by pressing on the tissues around it. For example, a tumor can cause pain if it
presses on bones, nerves, the spinal cord, or body organs.

3
 ■ Spinal cord compression. When a tumor spreads to the spine, it can press
on the spinal cord and cause spinal cord compression. The first sign of this is
often back or neck pain, or both. Coughing, sneezing, or other motions may
make it worse.

■ Pain from treatment. Chemotherapy, radiation therapy, surgery, and

other treatments may cause pain for some people. Some examples of pain
from treatment are:
• Neuropathic pain. This is pain that may occur if treatment damages the
nerves. The pain is often burning, sharp, or shooting. The cancer itself can
also cause this kind of pain.
• Phantom pain. You may still feel pain or other discomfort coming from
a body part that has been removed by surgery. Doctors aren’t sure why
this happens, but it’s real.

How much pain you feel depends on different things. These include where the
cancer is in your body, what kind of damage it is causing, and how you experience
the pain in your body. Everyone is different.

Listen to your body

If you notice that everyday actions, such as coughing, sneezing, or moving, cause
new pain or your pain to get worse, tell your doctors right away. Also let them know
if you have unusual rashes or bowel or bladder changes.

4
CHAPTER 3

Talking About Your Pain

Pain control is part of treatment. Talking openly is key.

“At first I tried to be brave. Now I realize that the only way to handle my
pain is to be open and honest about it with my health care team. It’s the
only way I can stay on top of it and keep it under control.” —Janie

Controlling pain is a key part of your overall cancer treatment. The most
important member of the team is you. You’re the only one who knows what your
pain feels like. Talking about pain is important. It gives your health care team the
feedback they need to make you feel better.

Some people with cancer don’t want to talk about their pain. They think that they’ll
distract their doctors from working on ways to help treat their cancer. Or they worry
that they won’t be seen as “good” patients. They also worry that they won’t be able
to afford pain medicine. As a result, people sometimes get so used to living with
their pain that they forget what it’s like to live without it.

But your health care team needs to know details about your pain and whether it’s
getting worse. This helps them understand how the cancer and its treatment are
affecting your body. And it helps them figure out how to best control the pain.

Try to talk openly about any other medical problems and fears you have. And if money
worries are stopping you, be sure to read the Financial Issues section starting on page 30
of this booklet. There may be ways to help you get the medicine you need.

Tell your health care team if you’re:

■ Taking any medicine to treat other health problems

■ Taking more or less of the pain medicine than prescribed

■ Allergic to certain drugs

■ Using any over-the-counter medicines, home remedies, or herbal or

alternative therapies

This information could affect the pain control plan your doctor suggests for you.
If you feel uneasy talking about your pain, bring a family member or friend to speak
for you. Or let your loved one take notes and ask questions. Remember, open
communication between you, your loved ones, and your health care team will lead
to better pain control.

5
 Talking about your pain.
The first step in getting your pain under control is talking honestly about it. Try to
talk with your health care team and your loved ones about what you are feeling.
This means telling them:
■ Where you have pain
■ What it feels like (sharp, dull, throbbing, constant, burning, or shooting)
■ How strong your pain is
■ How long it lasts
■ What lessens your pain or makes it worse
■ When it happens (what time of day, what you’re doing, and what’s going on)
■ If it gets in the way of daily activities

Describe and rate your pain.

You will be asked to describe and rate your pain. This provides a way to assess your
pain threshold and measure how well your pain control plan is working.

Your doctor may ask you to describe your pain in a number of ways. A pain scale is
the most common way. The scale uses the numbers 0 to 10, where 0 is no pain, and
10 is the worst. You can also use words to describe pain, like pinching, stinging, or
aching. Some doctors show their patients a series of faces and ask them to point to
the face that best describes how they feel.

No matter how you or your doctor keep track of your pain, make sure that you do it
the same way each time. You also need to talk about any new pain you feel.

It may help to keep a record of your pain. See the chart on page 37 for an example.
Some people use a pain diary or journal. Others create a list or a computer
spreadsheet. Choose the way that works best for you.

Your record could list:

■ When you take pain medicine
■ Name and dose of the medicine you’re taking
■ Any side effects you have
■ How long the pain medicine works
■ Other pain relief methods you use to control
your pain
■ Any activity that is affected by pain, or
makes it better or worse
■ Things that you can’t do at all because of
the pain

6
Share your record with your health care team. It can help them figure out how
helpful your pain medicines are, or if they need to change your pain control plan.

Here are some ways your health care team may ask you
to describe or rate your pain:

0 1 2 3 4 5 6 7 8 9 10

No Moderate Worst
Pain Pain Possible Pain

No Mild Moderate Severe Very Worst

Pain Pain Pain Pain Severe Possible
Pain Pain

No Pain As Bad As It
Pain Could Possibly Be

0 2 4 6 8 10
No hurt Hurts a Hurts a Hurts Hurts a Hurts
little bit little more even more whole lot worst

0–10 Numeric Pain Intensity Scale, Simple Descriptive Pain Intensity Scale, and Visual Analog Scale
(VAS): Acute Pain Management Guideline Panel. Acute Pain Management in Adults: Operative
Procedures. Quick Reference Guide for Clinicians AHCPR Pub. No. 92-0019. Rockville, MD:
Agency for Health Care Policy and Research, Public Health Service, U.S. Department of Health
and Human Services.
“Faces” Pain Scale adapted with permission from Hockenberry MJ, Wilson D, Winkelstein ML:
Wong’s Essentials of Pediatric Nursing, ed. 7, St. Louis, 2005, p. 1259. Used with permission.
Copyright, Mosby.

7
 Share your beliefs.
Some people don’t want to take medicine, even when it’s prescribed by the doctor.
Taking it may be against religious or cultural beliefs. Or there may be other personal
reasons why someone won’t take medicine. If you feel any of these ways about pain
medicine, it’s important to share your views with your health care team. If you
prefer, ask a friend or family member to share them for you. Talking openly about
your beliefs will help your health care team find a plan that works best for you.

“It makes sense. If you don’t tell someone about your pain, then no one can
help you! And the pain won’t go away by itself.” — Joe

8
CHAPTER 4

Your Pain Control Plan

“It took a few visits to my health care team to get my pain under
control. But by trying different medicines and doses, I now have a
pain plan that works for me.” —Michelle

Make your pain control plan work for you.

Your pain control plan will be designed for you and your body. Everyone has a
different pain control plan. Even if you have the same type of cancer as someone
else, your plan may be different.

Take your pain medicine dose on schedule to keep the pain from starting or getting
worse. This is one of the best ways to stay on top of your pain. Don’t skip doses.
Once you feel pain, it’s harder to control and may take longer to get better.

Here are some other things you can do:

■ Bring your list of medicines to each visit.
■ If you are seeing more than one doctor, make sure each one sees your list of
medicines, especially if he or she is going to change or prescribe medicine.
■ Never take someone else’s medicine. What helped a friend or relative may not
help you. Do not get medicine from other countries or the Internet without
telling your doctor.
■ Don’t wait for the pain to get worse.
■ Ask your doctor to change your pain control plan if it isn’t working.

The best way to control pain is to stop it before it starts

or prevent it from getting worse.
Don’t wait until the pain gets bad or unbearable before taking your medicine. Pain is
easier to control when it’s mild. And you need to take pain medicine often enough
to stay ahead of your pain. Follow the dose schedule your doctor gives you. Don’t try
to “hold off” between doses. If you wait:

■ Your pain could get worse.

■ It may take longer for the pain to get better or go away.

■ You may need larger doses to bring the pain under control.

9
 Keep a list of all your medicines.
Make a list of all the medicines you are taking. If you need to, ask a member of your
family or health care team to help you. Bring this list of medicines to each
visit. You can take most pain medicines with other prescription drugs. But your
health care team needs to know what you take and when. Tell them each drug you
are taking, no matter how harmless you think it might be. Even over-the-counter
medicines, herbs, and supplements can interfere with cancer treatment.

How to tell when you need a new pain control plan

Here are a few things to watch out for and tell your health care team about:

■ Your pain isn’t getting better or going away.

■ Your pain medicine doesn’t work as fast as your doctor said it would.

■ Your pain medicine doesn’t work as long as your doctor said it would.

■ You have breakthrough pain.

■ You have side effects that don’t go away.

■ Pain interferes with things like eating, sleeping, or working.

■ The schedule or the way you take the medicine doesn’t work for you.

If you have trouble breathing, dizziness, or rashes, call your doctor right
away. You may be having an allergic reaction to the pain medicine.

Don’t give up hope. Your pain can be managed.

If you are still having pain that is hard to control, you may want to talk with your
health care team about seeing a pain or palliative care specialist (see page 2).
Whatever you do, don’t give up. If one medicine doesn’t work, there is almost
always another one to try. Also, new medicines are created all the time. And unlike
other medicines, there is no “right” dose for many pain medicines. Your dose may be
more or less than someone else’s. The right dose is the one that relieves your pain
and makes you feel better.

10
CHAPTER 5

Medicines To Treat Cancer Pain

There is more than one way to treat pain.

Your doctor prescribes medicine based on the kind of pain you have and how severe
it is. In studies, these medicines have been shown to help control cancer pain.
Doctors use three main groups of drugs for pain: nonopioids, opioids,
and other types. You may also hear the term analgesics used for these pain
relievers. Some are stronger than others. It helps to know the different kinds of
medicines, why and how they’re used, how you take them, and what side effects you
might expect.

1. Nonopioids—for mild to moderate pain

Nonopioids are drugs used to treat mild to moderate pain, fever, and swelling. On a
scale of 0 to 10, a nonopioid may be used if you rate your pain from 1 to 4. These
medicines are stronger than most people realize. In many cases, they are all you’ll
need to relieve your pain. You just need to be sure to take them regularly.

You can buy most nonopioids without a prescription. But you still need to talk
with your doctor before taking them. Some of them may have things added
to them that you need to know about. And they do have side effects. Common ones,
such as nausea, itching, or drowsiness, usually go away after a few days. Do not take
more than the label says unless your doctor tells you to do so.

Nonopioids include:
■ Acetaminophen, which you may know as Tylenol®
Acetaminophen reduces pain. It is not helpful with inflammation. Most of the time,
people don’t have side effects from a normal dose of acetaminophen. But taking large
doses of this medicine every day for a long time can damage your liver. Drinking
alcohol with the typical dose can also damage the liver.
Make sure you tell the doctor that you’re taking acetaminophen. Sometimes it
is used in other pain medicines, so you may not realize that you’re taking more
than you should. Also, your doctor may not want you to take acetaminophen
too often if you’re getting chemotherapy. The medicine can cover up a fever,
hiding the fact that you might have an infection.
■ Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen
(which you may know as Advil® or Motrin®) and aspirin
NSAIDs help control pain and inflammation. With NSAIDs, the most common
side effect is stomach upset or indigestion, especially in older people. Eating food
or drinking milk when you take these drugs may stop this from happening.

11
 NSAIDs may also keep blood from clotting the way it should. This means that it’s
harder to stop bleeding after you’ve hurt yourself. NSAIDs can also sometimes
cause bleeding in the stomach.
Tell your doctor if:
■ Your stools become darker than normal

■ You notice bleeding from your rectum

■ You have an upset stomach

■ You have heartburn symptoms

■ You cough up blood

Acetaminophen and NSAIDs at a Glance

Type Other Names Action Side Effects

Acetaminophen Tylenol® Reduces pain Large doses can damage the liver.
and fever
May cause liver damage if you
drink three or more alcoholic drinks
a day.
Lowers fever. Talk to your doctor
if your body temperature is above
normal (98.6˚) and you are taking
this medicine.

NSAIDs (aspirin, Bayer® Reduces Can upset the stomach.

ibuprofen, (aspirin) pain,
Can cause bleeding of the stomach
naproxen) inflammation
Ecotrin® lining, especially if you drink
(swelling),
(aspirin) alcohol (wine, beer, etc.).
and fever
Advil® Can cause kidney problems,
(ibuprofen) especially in the elderly or those
with existing kidney problems.
Motrin®
(ibuprofen) Can cause heart problems,
especially in those who already
Nuprin®
have heart disease. However,
(ibuprofen)
aspirin does not cause heart
Aleve® problems.
(naproxen)
Avoid these medicines if you are on
anticancer drugs that may cause
bleeding.
Lowers fever. Talk to your doctor
if your body temperature is above
normal (98.6˚) and you are taking
this medicine.

12
 What to avoid when taking NSAIDs
Some people have conditions that NSAIDs can make worse. In general, you
should avoid these drugs if you:
■ Are allergic to aspirin
■ Are getting chemotherapy
■ Are on steroid medicines
■ Have stomach ulcers or a history of ulcers, gout, or bleeding disorders
■ Are taking prescription medicines for arthritis
■ Have kidney problems
■ Have heart problems
■ Are planning surgery within a week
■ Are taking blood-thinning medicine (such as Coumadin®)

2. Opioids—for moderate to severe pain

If you’re having moderate to severe pain, your doctor may recommend that you take
stronger drugs called opioids. Opioids are also known as narcotics. You must have a
doctor’s prescription to take them. They are often taken with aspirin, ibuprofen, and
acetaminophen.

Common opioids include:

■ Codeine ■ Methadone

■ Fentanyl ■ Morphine

■ Hydromorphone ■ Oxycodone

■ Levorphanol ■ Oxymorphone

■ Meperidine

Getting relief with opioids

Over time, people who take opioids for pain sometimes find that they need to take
larger doses to get relief. This is caused by more pain, the cancer getting worse, or
medicine tolerance (see pages 20 and 21). When a medicine doesn’t give you
enough pain relief, your doctor may increase the dose and how often you take it. He
or she can also prescribe a stronger drug. Both methods are safe and effective under
your doctor’s care. Do not increase the dose of medicine on your own.

13
 Managing and preventing side effects
Some pain medicines may cause:
■ Constipation (trouble passing stools)
■ Drowsiness (feeling sleepy)
■ Nausea (upset stomach)
■ Vomiting (throwing up)

Usually these side effects last only a few days. But if they last longer, your doctors can
change the medicine or dose you’re taking. Or they may also add another medicine to
your pain control plan to control the side effects. Keep in mind that constipation will
only go away if it’s treated. Your health care team can talk with you about other ways to
relieve side effects. Don’t let side effects stop you from getting your pain under control.

Other less common side effects include:

■ Dizziness
■ Confusion
■ Breathing problems
■ Itching
■ Trouble urinating

Constipation

Almost everyone taking opioids has some constipation. This happens because
opioids cause the stool to move more slowly through your system, so your body
takes more time to absorb water from the stool. The stool then becomes hard.

You can control or prevent constipation by taking these steps:

■ Ask your doctor about giving you laxatives and stool softeners when you
first start taking opioids. Taking these right when you start taking pain
medicine may prevent the problem.
■ Drink plenty of liquids. Drinking 8 to 10 glasses of liquid each day will help
keep stools soft.
■ Eat foods high in fiber, including raw fruits with the skin left on, vegetables,
and whole grain breads and cereals.
■ Add 1 to 2 tablespoons of bran to your food or sprinkle it on your food.
Remember to drink a glass of water when you eat bran, or it will make the
problem worse.
■ Exercise as much as you are able. Any movement, such as light walking,
will help.
■ Call your doctor if you have not had a bowel movement in 2 days or more.

14
Drowsiness

If your pain has kept you from sleeping, you may sleep more at first when you begin
taking opioids. The drowsiness usually goes away after a few days.

If you are tired or drowsy:

■ Don’t walk up and down stairs alone.
■ Don’t do anything where you need to be alert—driving, using machines or
equipment, or anything else that requires focus.

Call your doctor if the drowsiness is severe or doesn’t go away after a week.
■ You may have to take a smaller dose more often or change medicines.
■ It may be that the medicine isn’t relieving your pain, and the pain is keeping
you awake at night.
■ Your other medicines may be causing the drowsiness.
■ Your doctor may decide to add a new drug that will help you stay awake.

Nausea and vomiting

Nausea and vomiting usually go away after a few days of taking opioids.

These tips may help:

■ Stay in bed for an hour or so after taking your medicine if you feel sick when
walking around. This kind of nausea is like feeling seasick. Some over-the-
counter drugs may help, too. But be sure to check with your doctor before
taking any other medicines.
■ You may want to ask your doctor to prescribe antinausea drugs.
■ Ask your doctor if something else could be making you feel sick. It might
be related to your cancer or another medicine you’re taking. Constipation
can also add to nausea.

15
 Starting a new pain medicine
Some pain medicines can make you feel sleepy when you first take them. This
usually goes away within a few days. Also, some people get dizzy or feel confused.
Tell your doctor if any of these symptoms persist. Changing your dose or the type of
medicine can usually solve the problem.

What to watch out for when taking pain medicine

All drugs must be taken carefully. Here are a few things to remember when you are
taking opioids:

■ Take your medicines as directed. Also, don’t split, chew, or crush them,
unless suggested by your doctor.

■ Doctors will adjust the pain medicine dose so that you get the right
amount for your body. That’s why it’s important that only one doctor
prescribes your opioids. Make sure that you bring your list of medicines to
each visit. That way, your health care team is aware of your pain control plan.

■ Combining pain medicine with alcohol or tranquilizers can be

dangerous. You could have trouble breathing or feel confused, anxious,
or dizzy.
Tell your doctor how much and how often you:
• Drink alcohol
• Take tranquilizers, sleeping pills, or antidepressants
• Take any other medicines that make you sleepy

How to stop taking opioids

You may be able to take less medicine when the pain gets better. You may even be
able to stop taking opioids. But it’s important to stop taking opioids slowly, with your
doctor’s advice. When pain medicines are taken for long periods of time, your body
gets used to them. If the medicines are stopped or suddenly reduced, a condition
called withdrawal may occur. This is why the doses should be lowered slowly.
This has no relation to being addicted (see Chapter 6).

Stopping your pain medicines slowly makes withdrawal symptoms mild. But if you
stop taking opioids suddenly, you may start feeling like you have the flu. You may
sweat and have diarrhea or other symptoms. If this happens, tell your doctor or
nurse. He or she can treat these symptoms. Any symptoms from withdrawal may
take a few days to a few weeks to go away.

16
3. Other types of pain medicine
Doctors also prescribe other types of medicine to relieve cancer pain. They can be
used along with nonopioids and opioids. Some include:

■ Antidepressants. Some drugs can be used for more than one purpose. For
example, antidepressants are used to treat depression, but they may also help
relieve tingling and burning pain. Nerve damage from radiation, surgery, or
chemotherapy can cause this type of pain.

■ Antiseizure medicines (anticonvulsants). Like antidepressants,

anticonvulsants or antiseizure drugs can also be used to help control tingling
or burning from nerve injury.

■ Steroids. Steroids are mainly used to treat pain caused by swelling.

Be sure to ask your health care team about the common side effects
of these medicines.

How medicine is given

To relieve cancer pain, doctors often prescribe pills or liquids. But there are also
other ways to take medicines, such as:

■ Mouth: Some pain medicine can be put inside the cheek or under the tongue.

■ Injections (shots): There are two different kinds of shots:

• Under the skin: Medicine is placed just under the skin using a small
needle. These are called subcutaneous injections.
• In the vein: Medicine goes directly into the vein
through a needle. These are called intravenous (IV)
injections. Patient-controlled analgesia (PCA)
pumps are often used with these kinds of injections.
PCA pumps let you push a button to give yourself a
dose of pain medicine.

■ Skin patches: These bandage-like patches go on the skin.

They slowly but steadily, release medicine for 2 to 3 days.
Patient-controlled
analgesia pump (PCA)
■ Rectal suppositories: These are capsules or pills that
you put inside your rectum. The medicine dissolves and
is absorbed by the body.

■ Around the spinal cord: Medicine is placed between the wall of the spinal
canal and the covering of the spinal cord (called an epidural).

17
 Questions to ask your health care team
about your pain medicine:

■ How much medicine should I take? _________________________________________

How often? ________________________________________________________________

■ If my pain doesn’t go away, can I take more medicine? _______________________

How much should I increase the dose?_______________________________________

■ Should I call you before taking more medicine? ______________________________

■ How long does the medicine last? ___________________________________________

■ What if I forget to take my medicine or take it later than I was supposed to?
___________________________________________________________________________

■ Should I take my medicine with food? _______________________________________

■ How much liquid should I drink with the medicine?__________________________

■ How long does it take for the medicine to start working?______________________

■ Is it safe to drink alcohol (wine, beer, etc.), drive, or run machinery after I’ve
taken the medicine? ________________________________________________________

■ What other medicines can I take with the pain medicine?_____________________

___________________________________________________________________________
___________________________________________________________________________

■ What are the side effects? How can I prevent them? __________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________

■ What should I call you about right away? ____________________________________

___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________
___________________________________________________________________________

18
Other ways to relieve pain
Medicine doesn’t always relieve pain in some people. In these cases, doctors use
other treatments to reduce pain:

■ Radiation therapy. Different forms of radiation energy are used to

shrink the tumor and reduce pain. Often one treatment is enough to help
with the pain. But sometimes several treatments are needed.

■ Neurosurgery. A surgeon cuts the nerves that carry pain messages to

your brain.

■ Nerve blocks. Anesthesiologists inject pain medicine into or around the

nerve or into the spine to relieve pain.

■ Surgery. A surgeon removes all or part of a tumor to relieve pain.

This is especially helpful when a tumor presses on nerves or other parts
of the body.

■ Chemotherapy. Anticancer drugs are used to reduce the size of a tumor,

which may help with the pain.

■ Transcutaneous Electric Nerve Stimulation (TENS). TENS uses a

gentle electric current to relieve pain. The current comes from a small
power pack that you can hold or attach to yourself.

19
 CHAPTER 6

Medicine Tolerance and Addiction

When treating cancer pain, addiction is rarely a problem.

Addiction is when people can’t control their seeking or craving for something.
They continue to do something even when it causes them harm. People with cancer
often need strong medicine to help control their pain. Yet some people are so afraid
of becoming addicted to pain medicine that they won’t take it. Family members may
also worry that their loved ones will get addicted to pain medicine. Therefore, they
sometimes encourage loved ones to “hold off” between doses But even though they
may mean well, it’s best to take your medicine as prescribed.

People in pain get the most relief when they take their medicines on schedule.
And don’t be afraid to ask for larger doses if you need them. As mentioned on
page 13, developing a tolerance to pain medicine is common. But taking cancer
pain medicine is not likely to cause addiction. If you’re not a drug addict, you
won’t become one. Even if you have had an addiction problem before, you still
deserve good pain management. Talk with your doctor or nurse about your concerns.

“If you’re worried about addiction, ask yourself one

question. If you didn’t have this pain, would you
want this medicine? The answer is usually no.”
—Robin

20
Tolerance to pain medicine sometimes happens.
Some people think that they have to save stronger medicines for later. They’re afraid
that their bodies will get used to the medicine and that it won’t work anymore. But
medicine doesn’t stop working—it just doesn’t work as well as it once did. As you
keep taking a medicine over time, you may need a change in your pain control plan
to get the same amount of relief.

This is called tolerance. Tolerance is a common issue in cancer pain treatment.

Medicine tolerance is not the same as addiction.

As mentioned, medicine tolerance happens when your body gets used to the
medicine you’re taking. Each person’s body is different. Many people don’t develop a
tolerance to opioids. But if tolerance happens to you, don’t worry.

Under your doctor’s care, you can:

■ Increase your dose in small amounts

■ Add a new kind of medicine

■ Change the kind of medicine that you’re taking for pain

The goal is to relieve your pain. Increasing the dose to overcome tolerance does not
lead to addiction.

Taking pain medicine will not cause you to “get high.”

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. 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 this problem.

21
 CHAPTER 7

Other Ways To Control Pain

Along with your pain medicine, your health care team may suggest you try other
methods to control your pain. However, unlike pain medicine, some of these methods
have not been tested in cancer pain studies. But they may help improve your quality
of life by helping you with your pain, as well as stress, anxiety, and coping with cancer.
Some of these methods are called complementary or integrative.

These treatments include everything from cold packs, massage, acupuncture,

hypnosis, and imagery to biofeedback, meditation, and therapeutic touch.
Once you learn how, you can do some of them by yourself. For others, you may
have to see a specialist to receive these treatments. If you do, ask if they are
licensed experts.

Acupuncture
Acupuncture is a form of Chinese medicine. It involves inserting very thin, metal
needles into the skin at certain points of the body. (Applying pressure to these points
with just the thumbs or fingertips is called acupressure.) The goal is to change the body’s
energy flow so it can heal itself.

When receiving this treatment, you may have a slight ache, dull pain, tingling, or
electrical-feeling sensation for a few seconds after the needles are inserted. Once the
needles are in place, though, you shouldn’t feel any discomfort. They remain in
place for 15 to 30 minutes. However, it may be more or less, depending on what the
practitioner suggests.

Acupuncture has been shown to help with nausea and vomiting related to cancer
treatment. And some studies have shown it may help with cancer pain. Before
getting acupuncture, talk with your health care team to make sure it’s safe for your
type of cancer. If it is, your health care team can suggest a licensed acupuncturist.
Many hospitals and cancer centers have one on staff.

Biofeedback
Biofeedback uses machines to teach you how to control certain body functions,
such as heart rate, breathing, and muscle tension. You probably never think of
these body functions because they happen on their own. But learning how to
control them may help you relax and cope with pain. Biofeedback is often used
with other pain relief methods. If you’re interested in trying this method, you
must see a licensed biofeedback technician.

22
Distraction
Distraction is simply turning your
focus to something other than the
pain. It may be used alone to manage
mild pain, or used with medicines to
help with acute pain, such as pain
related to procedures or tests. Or you
may try it while waiting for your
pain medicine to start working.

More than likely, you’ve done this

method without realizing it. For
example, watching television and
listening to music are good ways to
distract your mind. In fact, any
activity that can focus your attention can be used for distraction. You can count,
sing, or pray. You could try slow rhythmic breathing or repeat certain phrases over
and over again, such as “I can cope.”

You could do certain activities that take your mind from the pain. Some of these
may be crafts or hobbies, reading, going to a movie, or visiting friends.

Heat and Cold

Heat may relieve sore muscles, while cold may numb the pain. However, ask your
doctor if it is safe to use either during treatment. Do not use them for more than 10
minutes at a time. And do not use heat or cold over any area where circulation is poor.

For cold, try plastic gel packs that remain soft even when frozen. You can find them
in drug and medical-supply stores. Of course, you always can use ice cubes wrapped
in a towel or frozen water in a paper cup.

For heat, you can use a heating pad. But you also can try gel packs heated in hot
water, hot-water bottles, a hot, moist towel, and hot baths and showers. Be careful
not to leave heat on too long to avoid burns.

Hypnosis
Hypnosis is a trance-like state of relaxed and focused attention. People describe it as
a lot like the way they feel when they first wake up in the morning. Their eyes are
closed, but they’re aware of what’s going on around them. In this relaxed state,
people’s minds are usually more receptive or open to suggestion. As a result,
hypnosis can be used to block the awareness of pain or to help you change the
sensation of pain to a more pleasant one.

You’ll need to see a person who is trained in hypnosis, often a psychologist or

psychiatrist. He or she may also be able to teach you how to place yourself in a
trance-like state, by making positive suggestions to yourself.
23
 Imagery
Imagery is like a daydream. You close your eyes and create images in your mind to
help you relax, feel less anxious, and sleep. You daydream using all of your senses –
sight, touch, hearing, smell, and taste. For example, you may want to think of a
place or activity that made you happy in the past. You could explore this scene,
which could help reduce your pain both during and after you try it.

If you have to stay in bed or can’t leave the house, imagery may help. It may lessen
the closed-in feelings you have after being indoors for a long time. See page 39 for
an exercise on how to use imagery.

Massage
Massage may help reduce pain and anxiety. It may also help with fatigue and stress.
It is pressing, rubbing, and kneading parts of the body with hands or special tools.
For pain, a steady, circular motion near the pain site may work best. Massage may
also help relieve tension and increase blood flow. Deep or intense pressure should
not be used with cancer patients unless their healthcare team says it’s okay to do so.

Meditation
Meditation is a form of mind-body medicine used to help relax the body and quiet
the mind. It may help with pain, as well as with worry, stress, or depression.

People who are meditating use certain techniques such as focusing attention on
something, like a word or phrase, an object, or the breath. They may sit, lie down,
walk, or be in any other position that makes them feel comfortable. A goal while
meditating is to try to have an open attitude toward distracting thoughts or
emotions. When they occur, attention is gently brought back to breathing or the
silent repeating of phrases.

“I began meditating as a way to help relieve my

pain and calm myself. I can’t avoid medicine,
but I feel like I don’t have to take as much.”
—Anna

24
Relaxation
Relaxation reduces pain or keeps it from getting worse by getting rid of tension in
your muscles. It may help you sleep and give you more energy. Relaxation may also
reduce anxiety and help you cope with stress.

The most common methods of relaxation are:

■ Visual concentration. When you stare at an object.
■ Breathing and muscle tensing. This is breathing in and tensing the
muscles, then breathing out while letting your muscles go. See page 40 for
an exercise on how to use breathing and muscle tensing.
■ Slow rhythmic breathing. To do this, you breathe slowly in and out while
concentrating on an object. You can add imagery to slow rhythmic breathing
or listen to music too. See page 40 for an exercise on how to use slow
rhythmic breathing.

Sometimes, relaxation is hard if you’re in severe pain. You could try using some of the
methods that are quick and easy. These may be rhythmic massage or breathing and
muscle tensing. Some people use music or other types of art therapy to help them relax.

Sometimes breathing too deeply can cause shortness of breath. If this happens, take
shallow breaths or breathe more slowly. Also, as you start to relax, you may fall
asleep. If you don’t want to sleep, sit in a hard chair or set a timer or alarm before
you start the exercise.

Other Methods
Here are some other ways people have tried to find relief from cancer pain.

■ Physical Therapy. Exercises or methods used to help restore strength,

increase movement to muscles, and relieve pain.

■ Reiki. A form of energy medicine in which the provider places his or her
hands on or near the patient. The intent is to transmit what is believed to be
a life force energy called qi (or chi).

■ Tai Chi. A mind-body practice that is a series of slow, gentle movements

with a focus on breathing and concentration. The thought is that it helps
what is believed to be a life force energy (called qi) flow through the body.

■ Yoga. Systems of stretches and poses with special focus given to breathing.
It is meant to calm the nervous system and balance the body, mind, and
spirit. There are different types of yoga, so ask about which ones would be
best for you.

Make sure that you see a licensed expert when trying physical therapy,
massage, hypnosis, or acupuncture.
25
 To learn more about complementary treatments for pain:
■ Talk with your doctor, nurse, or oncology social worker.

■ See the NCI booklet Thinking About Complementary & Alternative Medicine:
A Guide for People With Cancer. See page 34 on how to order.

■ Contact the National Center for Complementary and Alternative Medicine at

1-888-644-6226 or online at http://nccam.nih.gov.

■ See the web site for the NCI Office of Cancer Complementary and Alternative
Medicine at www.cancer.gov/cam.

Remember: Always talk with your doctor before using any complementary
pain treatments. Some may interfere with your cancer treatment.

26
CHAPTER 8

Your Feelings and Pain

“At first I wasn't able to do the things I used to do.

I couldn't mow my lawn or work in my garden.
It was very frustrating.” —Juan

Having pain and cancer affects every part of your life.

It can affect not only your body, but your thoughts and feelings as well. Whether you
have a lot of pain or a little, if it’s constant, you may feel like you aren’t able to focus
on anything else. It may keep you from doing things and seeing people that you
normally do. This can be upsetting and may feel like a cycle that never seems to end.

Sometimes things that people used to take for granted aren’t as easy anymore. These
may include cooking, getting dressed, or just moving around. Some people can’t work
because of the pain or have to cut back on their hours. They may worry about money.
Limits on work and everyday life may also make people less social, wanting to see
others less often.

Research shows that people in pain may feel sad or anxious and may get depressed
more often. At other times they may feel angry and frustrated. And they can feel
lonely, even if they have others around them.

A common result of having cancer and being in pain is fear. For many, pain and fear
together feel like suffering. People get upset worrying about the future. They focus
their thoughts on things that may or may not happen. You may feel fear about many
things, such as fear of:

■ The cancer getting worse

■ The pain being too much to handle

■ Your job or daily tasks becoming too hard to do

■ Not being able to attend special trips or events

■ Loss of control

This rollercoaster of feelings often makes people look for the meaning that cancer
and pain have in their life. Some question why this could happen to them. They
wonder what they did to deserve it. Others may turn to religion or explore their
spirituality more, asking for guidance and strength.

27
 Don’t lose hope.
If you have feelings like these, know that you’re not alone. Many people with cancer
pain have had these kinds of feelings. Having negative thoughts is normal. And
some people have positive thoughts, too, finding benefits in facing cancer. But if
your negative thoughts overwhelm you, don’t ignore your feelings. Help is there for
you if you’re distressed or unsure about your future.

Finding support
There are many people who can help you. You can talk with oncology social
workers, health psychologists, or other mental health experts at your hospital or
clinic. Your health care team can help you find a counselor who is trained to help
people with long-term illnesses. These people can help you talk about what you are
going through and find answers to your concerns. They may suggest medicine that
will help you feel better if you need it.

Many people say that they regain a sense of control and well-being after talking with
people in their spiritual or religious community. A leader from one of these groups
may be able to offer support, too. Many are trained to help people cope with illness.
Also, many hospitals have a staff chaplain who can counsel people of all faiths.

You can also talk with friends or others in your community. Some join a support
group. Cancer support groups are made up of people who share their feelings about
coping with cancer. They can meet in person, by phone, or over the Internet. They
may help you gain new insights and ideas on how to cope. To find a support group
for you, talk with your doctor, nurse, or oncology social worker.

“I can’t help feeling frustrated with

all that’s going on in my life.
Between my cancer treatments and
the pain, I get upset and angry.
Sometimes I really need someone to
talk to—someone who understands
what I’m going through.” —Carlos

28
 How your pain affects your loved ones

Chronic or severe pain affects everyone who loves and takes care of you. It can be
hard for family members and friends to watch someone close to them be in pain.
Like you, your loved ones may feel angry, anxious, and lonely. They may feel
helpless because they can’t make you feel better. They may even feel guilty that you
have pain while they don’t. Or they may feel loss, because your pain keeps you from
doing things you like to do.
It’s natural for family members and friends to have these emotions. It may help if
everyone understands that these emotions exist and that no one needs to face
them alone.
Let your family members know it’s okay for them to get help. Like you, they can talk
to a counselor or join a support group. Encourage them to ask the oncology social
worker about the options that are available for them.
Also, they can read the NCI booklets for caregivers listed on the inside front cover
of this booklet.

Talking with family members

You may want to let family members and friends know how you’re feeling. For some,
this can be hard or awkward. Some people say that they want to avoid upsetting those
closest to them. Others say that they don’t want to seem negative. But open and honest
communication can help everyone. Letting others know about your pain may help
them understand what you are going through. They can then look for ways to help
you. Your loved ones may also feel better knowing that they’re helping to make you
feel more comfortable.

Family problems before your cancer

Any problems your family had before you got cancer are likely to be more intense
now. Or maybe your family just doesn’t communicate very well. If this is the case,
you can ask a social worker to set up a family meeting for you. During these
meetings, the doctor can explain treatment goals and issues. And you and your
family members can state your wishes for care. These meetings can also give
everyone a chance to express their feelings in the open. Remember, there are many
people you can turn to at this time.

For more about coping with your feelings, see the NCI brochure, Taking Time:
Support for People With Cancer. See page 34 on how to order or download.

29
 CHAPTER 9

Financial Issues

“My doctor told me about a pain control technique that he thought

would help me. I was a little worried about how I would
pay for it. It took one phone call to my insurance
company, and my questions were answered.” —Terry

When you’re in pain, the last thing you want to think

about is paying for your medicine. Yet money worries
have stopped many people from getting the pain
treatment they need. Talk with your oncology social
worker if you have questions. He or she should be able
to direct you to resources in your area. Here are some general tips:

Insurance
When dealing with health insurance, you might want to:

■ Call your insurance company and find out what treatments are covered.
Sometimes insurance companies pay for only certain types of medicines. If
the medicine you need isn’t covered, your doctor may need to write a special
appeal letter. Or your doctor may need to prescribe a different treatment.

■ Ask if your insurance company can give you a case manager to help you with
your coverage.

■ Check to make sure that your plan will cover any specialists your doctor
refers you to. If it does not, check with your insurance company to see which
doctors are included in your plan. Ask your doctor to refer you to someone
on your plan’s list.

■ Find out whether you have to pay copayments up front and how much
they cost.

■ Find out how you should pay your balance. For example, do you file a claim?
Does the insurance company pay first? Or do you pay and get reimbursed?

■ Tell the insurance company if you believe you’ve received an incorrect bill.
You should also tell your doctor or the hospital or clinic that sent the bill.
Don’t be afraid to ask questions.

30
Government health insurance
Medicare
Medicare is health insurance for people age 65 or older. However, people under 65
who are on kidney dialysis or have certain disabilities may also qualify.

Medicare Part B only pays for outpatient medicine given by a pump or by vein.
It doesn’t pay for pills, patches, or liquids.

Medicare Part D is a benefit that covers outpatient prescription medicines. It comes

from private insurance plans that have a contract with Medicare. These plans vary in
what they cost and the medicines they cover. Find out which medicines a plan
covers before you join to make sure that it meets your needs. You should also know
how much your copays and deductible will be.

Medicaid
Medicaid gives health benefits to low income people and their families. Some may
have no health insurance or not enough, and therefore need this help.

If you have Medicaid, you should know that it pays for medicine given by mouth
(orally) or by vein (intravenous). Each state has its own rules about who is eligible
for Medicaid.

To learn more about Medicare and Medicaid talk with your oncology social worker.
You can also go to the Medicare and Medicaid Web site, www.cms.hhs.gov,
or call the helpline at 1-800-MEDICARE (1-800-633-4227). Specialists can
answer your questions or direct you to free counseling in your area.

Other advice
Don’t be embarrassed to tell your health care team if you’re having trouble paying
for your medicine. They may be able to prescribe other medicine that better fits
your budget.

If you feel that you’re overwhelmed, the stress may seem like too much to handle.
You might try getting help with financial planning. Talk with the business office
where you get treatment. There are many free consumer credit counseling agencies
and groups. Talk with your oncology social worker about your choices.

You can also contact the NCI’s Cancer Information Service (CIS) and ask for the
Financial Assistance and Other Resources for People With Cancer fact
sheet. See the Resources section on page 34 for ways to contact NCI.

31
 Tips for saving money on pain medicine

If the cost of pain medicine is an issue for you, consider the following tips:
■ Ask your doctor if there are
generic brands of your
medicine available. These
usually cost less than brand-
name medicines.
■ Ask your doctor for medicine
samples before paying for a
prescription. You can’t get
samples of opioids. But you can
ask your doctor to write only
part of the prescription. This
way you can make sure that
the medicine works for you
before buying the rest of it. This
will only help if you pay by the
amount you buy. For some insurance plans, you pay the same amount for
part of or the whole prescription. Find out what will work best for you.
■ Ask about drug companies that have special programs to give free drugs to
patients in financial need. Your doctor should know about these programs.
■ Remember that pills may cost less than other forms of medicine.

■ Use a bulk-order mail pharmacy. But first make sure that the medicine
works for you. Also, be aware that you can’t order opioids in bulk or through
the mail. Ask your oncology social worker or pharmacist about bulk-order
mail pharmacies.
■ Contact NeedyMeds.
They are a nonprofit organization that helps people who cannot afford
medicine or health care costs. Go to www.needymeds.com, or ask someone
to do it for you.

32
 Reflection

You can take control of your pain. Work with your doctor and the other members
of your health care team to find the best plan for you. Read the tips in this
booklet and make them work for you. Don’t lose hope. You don’t have to accept
pain as a normal part of cancer or treatment. You deserve to have the best care
and support there is.

When the world says, “Give up,”

Hope whispers,
“Try it one more time.”
(author unknown)

33
 For more resources:
Resources Go to the NCI web site
at www.cancer.gov.
In the search box, type
You can get information about cancer from many
in the words “national
sources. Some are listed here. You may also want to
organizations.”
check for more information from support groups in
Or call 1-800-4-CANCER
your community.
(1-800-422-6237) to seek
more help.
Federal Agencies

■ National Cancer Institute

Has current information on cancer prevention, screening, diagnosis, treatment,
genetics, and supportive care. NCI’s web site (www.cancer.gov) lists clinical trials
and specific cancer topics in NCI’s Physician Data Query (PDQ®) database.
Cancer Information Service
Gives clear, up-to-date information on cancer to patients, families, health
professionals, and the general public. It translates the latest scientific
information into plain language in English, in Spanish, or on TTY equipment.
Toll-free: 1-800-4-CANCER (1-800-422-6237)
TTY: 1-800-332-8615
Online: www.cancer.gov/cis
Chat online: www.cancer.gov/help

■ Centers for Medicare & Medicaid Services (CMS)

Has information about patient rights, prescription drugs, and health insurance
issues, including Medicare and Medicaid.
Toll-free: 1-800-MEDICARE (1-800-633-4227)
Online: www.medicare.gov (for Medicare information) or
www.cms.hhs.gov (for other information)

■ National Center for Complementary and Alternative Medicine (NCCAM)

Part of the National Institutes of Health. It funds and studies medical practices
that are not commonly used as standard care. It rates how well these different
practices work and shares this information with the public.
Toll-free: 1-888-644-6226
TTY: 1-888-644-6226
Online: nccam.nih.gov

34
Private/Nonprofit Organizations

■ American Cancer Society (ACS)

Mission is to end cancer as a major health problem through prevention, saving
lives, and relieving suffering. ACS works toward these goals through research,
education, advocacy, and service. The organization’s National Cancer
Information Center answers questions 24 hours a day, 7 days a week.
Toll-free: 1-800-ACS-2345 (1-800-227-2345)
TTY: 1-866-228-4327
Online: www.cancer.org

■ American Pain Foundation

Serves people with pain through information, advocacy, and support; pain and
resource information, practical help and publications are available through toll-
free telephone service and website.
Toll-free: 1-888-615-PAIN (1-888-615-7246)
Online: www.painfoundation.org

■ CancerCare
Offers free support, information, and financial and practical help to people with
cancer and their loved ones.
Toll-free: 1-800-813-HOPE (1-800-813-4673)
Online: www.cancercare.org

■ Center to Advance Palliative Care

Goal is to increase the availability of quality palliative care services for people
facing serious illness. Offers training and assistance to health care professionals.
Phone: 1-212-201-2670
Online: www.capc.org
For patients
and families: www.getpalliativecare.org

■ National Coalition for Cancer Survivorship (NCCS)

Gives out information on cancer support, employment, financial and legal issues,
advocacy, and related issues.
Toll-free: 1-877-NCCS-YES (1-877-622-7937)
Online: www.canceradvocacy.org

35
 ■ National Hospice and Palliative Care Organization (NHPCO)
Has information on hospice care, local hospice programs, advance directives in
different states, and finding a local health care provider. It offers education and
materials on palliative and end-of-life issues through its Caring Connections
program, as well as links to other organizations and resources.
Toll-free: 1-800-658-8898
Online: www.nhpco.org
Caring Connections
Toll-free: 1-800-658-8898
Online: www.caringinfo.org

■ NeedyMeds
Lists medicine assistance programs available from drug companies.
NOTE: Usually patients cannot apply directly to these programs.
Ask your doctor, nurse, or social worker to contact them.
Online: www.needymeds.com

■ Patient Advocate Foundation

Offers education, legal counseling, and referrals concerning managed care,
insurance, financial issues, job discrimination, and debt crisis matters.
Toll-free: 1-800-532-5274
Online: www.patientadvocate.org

■ The Wellness Community

Provides free psychological and emotional support to cancer patients and
their families.
Toll-free: 1-888-793-WELL (1-888-793-9355)
Online: www.thewellnesscommunity.org

36
 Pain Control Record

You can use a chart like this to keep a record of how well your medicine is working.
Some people call it a pain diary. Write the information in the chart below. Describe
the amount of pain you feel using the way that works best for you. You can use
words, numbers on a scale from 0 to 10, or even draw a face (see page 7 for
examples). Take the chart with you when you visit your doctor.

Date Time Describe the pain you feel Level of

pain

6/8 8 a.m. stabbing pain in side 9

(example)

6/10 all day dull ache in legs 5

(example)

37
 Medicines you are taking now
Use this form to record all medicines—not just pain medicines—that you are taking.
This information will help your doctor keep track of all your medicines.

Date Medicine Dose How often How well is it Prescribing

taken working? doctor

Pain medicines you have taken in the past

Use this form to record the pain medicines you have taken in the past. It will help
your doctor understand what has and hasn’t worked.

Date Medicine Dose How often Side Reason

taken effects for stopping

38
 How to Use Imagery

Imagery usually works best with your

eyes closed. To begin, create an
image in your mind. For example,
you may want to think of a
place or activity that made
you happy in the past.
Explore this place or activity.
Notice how calm you feel.

If you have severe pain, you

may imagine yourself as a
person without pain. In
your image, cut the wires
that send pain signals from
one part of your body to
another. Or you may want to
imagine a ball of healing energy.
Others have found this exercise to
be very helpful:

■ Close your eyes and breathe slowly. As you breathe in, say silently and slowly
to yourself, “In, one, two,” and as you breathe out, say “Out, one, two.” Do
this for a few minutes.

■ Imagine a ball of healing energy forming in your lungs or on your chest.

Imagine it forming and taking shape.

■ When you’re ready, imagine that the air you breathe in blows this ball of
energy to the area where you feel pain. Once there, the ball heals and relaxes
you. You may imagine that the ball gets bigger and bigger as it takes away
more of your discomfort.

■ When you breathe out, imagine the air blowing the ball away from your
body. As it goes, all your pain goes with it.

■ Repeat the last two steps each time you breathe in and out.

■ To end the imagery, count slowly to three, breathe in deeply, open your eyes,
and say silently to yourself, “I feel alert and relaxed.”

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 Relaxation Exercises
You may relax either sitting up or lying down, preferably in a quiet place. Make sure
you’re comfortable. Don’t cross your arms or legs because you could cut off
circulation. If you’re lying down, you may want to put a small pillow under your
neck and knees.

Once you’re comfortable and your eyes are closed, you could try any of the
following relaxation methods:

Breathing and muscle tensing

■ Breathe in deeply.
■ At the same time, tense your muscles or group of muscles. For example, you
can squeeze your eyes shut, frown, or clench your teeth. Or, you could make
a fist, stiffen your arms and legs, or draw your legs and arms up into a ball
and hold as tightly as you can.
■ Hold your breath and keep your muscles tense for a second or two.
■ Let go. Breathe out and let your body go limp.

Slow rhythmic breathing

■ Stare at an object or shut your eyes and think of a peaceful scene. Take a slow,
deep breath.
■ As you breathe in, tense your muscles. As you breathe out, relax your muscles
and feel the tension leaving.
■ Remain relaxed and begin breathing slowly and comfortably, taking about
nine or 12 breaths a minute. To maintain a slow, even rhythm, you can
silently say to yourself, “in, one, two; out, one, two.”
■ If you ever feel out of breath, take a deep breath, and continue the slow
breathing.
■ Each time you breathe out, feel yourself relaxing and going limp. Continue
the slow, rhythmic breathing for up to 10 minutes, if you need it.
■ To end the session, count silently and slowly from one to three. Open your
eyes. Say to yourself, “I feel alert and relaxed.” Begin moving slowly.

If you decide to use slow rhythmic breathing as a way to relax and reduce pain, you
may want to try these tips. They can add to the experience.
■ Listen to slow, familiar music through earphones.
■ Once you’re breathing slowly, slowly relax different parts of your body, one
after the other. Start with your feet and work up to your head.
■ Each time you breathe out, you can focus on a particular area of the body and
feel it relaxing. Try to imagine the tension draining from the area.
■ Consider using relaxation tapes. They often include each step on how to relax.

40
 Words To Know

Acupuncture (ACK-yu-punk-chur): Small needles are inserted into the skin at

certain points of the body to relieve pain.

Acute pain: Pain that is very bad but lasts a fairly short time.

Addiction (uh-DIK-shin): Drug craving, seeking, and use that you can’t control.

Analgesic: A drug that reduces pain.

Anesthesiologist (an-uh-steez-ee-YAH-luh-jist): A doctor who specializes in giving

medicines or other drugs that prevent or relieve pain.

Anticonvulsant (an-tee-kuhn-VUHL-sint): Medicine used to treat seizures that can

also be used to control burning, stabbing, and tingling pain.

Antidepressant (an-tee-duh-PRES-int): Medicine used to treat depression that can

also be used to relieve tingling, stabbing, or burning pain from damaged nerves.

Biofeedback: A way of learning to control some body functions such as heartbeat,

blood pressure, and muscle tension with the help of special machines. This method
may help control pain.

Breakthrough pain: An intense rise in pain that occurs suddenly or is felt for a
short time. It can occur by itself or in relation to a certain activity. It may happen
several times a day, even when you’re taking the right dose of medicine.

Chemotherapy (kee-moh-THAIR-uh-pee): Treatment with anticancer medicines.

Chronic (KRAH-nik) pain: Pain that can range from mild to severe and is present
for a long time.

Complementary treatment: Treatment used along with standard medical care.

Deductible: The amount you must pay for health care before insurance begins to pay.

Distraction: A pain relief method that takes the attention away from the pain.

Dose: The amount of medicine taken.

Epidural (ep-uh-DUR-ul): An injection into the spinal column but outside of the
spinal cord. Having to do with the space between the wall of the spinal canal and
the covering of the spinal cord.

Generic: The scientific name of a drug, as opposed to the brand name. Also, drugs
not protected by trademark.

Hypnosis (hip-NOH-sis): A person enters into a trance-like state, becomes more

aware and focused, and is more open to suggestion.

Imagery: People think of pleasant images or scenes, such as waves hitting a beach,
to help them relax.
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 Integrative medicine: Combines standard medical care and complementary
and alternative medicine, for which there is some high-quality evidence of safety
and effectiveness.

Intravenous (in-tra-VEE-nus): Within a blood vessel. Also called IV.

Intravenous infusion: A way of giving pain medicine into a vein or under the
skin. An infusion flows in by gravity or a mechanical pump. It is different from an
injection, which is pushed in by a syringe.

Laxative: Something you take to help you pass solid waste, or stool, from your
body. There are many different kinds of laxatives.

Narcotics (nahr-KAH-tiks): See opioids.

Nerve block: Pain medicine is injected directly into or around a nerve or into the
spine to block pain.

Neurologist: A doctor who specializes in the treatment of nervous system disorders.

Neuropathic (noor-AH-path-ik) pain: Pain that occurs when treatment damages

the nerves.

Nonopioids (nahn-OH-pee-yoidz) : Acetaminophen and nonsteroidal anti-

inflammatory drugs (NSAIDs), such as aspirin, ibuprofen, and naproxen.

Nonprescription: Over-the-counter drugs that you can buy without a doctor’s order.

NSAIDs (Nonsteroidal anti-inflammatory drugs): Medicines that control mild

to moderate pain and inflammation and reduce fever. Can be used either alone or
together with other medicines.

Oncologist (ahn-KAH-luh-jist): A doctor who specializes in the treatment of cancer.

Oncology (ahn-KAH-luh-jee): The study and treatment of cancer.

Onset of action: The length of time it takes for a medicine to start to work.

Opioids (OH-pee-yoidz): Also known as narcotics. They are used to treat moderate
to severe pain. A prescription is needed for these medicines.

Oral: By mouth.

Pain threshold: The point at which a person becomes aware of pain.

Palliative (PAL-ee-yuh-tiv) care: Care given to improve quality of life and/or slow
cancer’s growth. The goal is to prevent or treat the symptoms, side effects, and
psychological and emotional problems of the disease. Not meant to be a cure.

Patient-controlled analgesia (an-ull-JEEZ-ya) (PCA): A way for a person with

pain to control the amount of pain medicine he or she receives. When pain relief is
needed, the person can press a button on a computerized pump connected to a small
tube inserted into the vein or under the skin. Pushing the button delivers a preset
dose of pain medicine.

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Phantom pain: When pain or other unpleasant feelings are felt from a missing
(phantom) body part that has been removed by surgery.

Physical therapy: Treatment for pain in muscles, nerves, joints, and bones. This
treatment uses exercise, electrical stimulation, and hydrotherapy, as well as massage,
heat, cold, and electrical devices.

Prescription: A doctor’s order.

Qi (chee): What is believed to be a life force energy.

Radiation therapy: Treatment with high-energy x-rays to kill or control cancer

cells.

Relaxation techniques: Methods used to lessen tension, reduce anxiety, and

manage pain.

Side effects: Problems caused by a medicine or other treatment. Examples are

constipation and drowsiness.

Skin patch: A bandage-like patch that releases medicine through the skin and then
into the bloodstream. The medicine enters the blood slowly and steadily.

Standard treatment: The treatment that is accepted and most often used.

Stage: The extent of disease. It can also be a phase of a clinical trial.

Steroids: Medicines that reduces swelling and inflammation.

Stool softeners: Medicine that softens the solid waste in your body, making it
easier to pass.

Subcutaneous (sub-kyu-TAY-nee-yus) injection: A shot under the skin.

Sublingual: Under the tongue.

Supplements: Vitamins, minerals, herbs, and other things you can take besides
medicines.

Tolerance: Occurs when the body gets used to a medicine. The result is that the
dose no longer works well. Either more medicine is needed to control the pain or
different medicine is needed.

Transcutaneous (tranz-kyu-TAY-nee-yus) Electrical Nerve Stimulation

(TENS): A method in which mild electric currents are applied to some areas of the
skin by a small power pack connected to two electrodes.

Transmucosal (tranz-myu-KO-sol): Absorbed through the lining of the mouth.

Withdrawal: Signs and symptoms that can appear when long-term use of opioids
is stopped or suddenly reduced a lot.

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 Important Names and Phone Numbers

Doctor ________________________________________ ________________________

Doctor ________________________________________ ________________________

Nurse_________________________________________ ________________________

Clinic _________________________________________ ________________________

Pharmacist ____________________________________ ________________________

Other _________________________________________ ________________________

Appointments

_____________________________________________ ________________________

_____________________________________________ ________________________

_____________________________________________ ________________________

Before you go to the pharmacy—know what you’re getting!

Sometimes people get new prescriptions and are confused about how to take them and when.
If your doctor prescribes a new medicine, it’s important for you to understand what you will be taking.
Before you leave your visit, ask your health care team:
■ How do you spell the name of the drug?
■ What does the medicine look like? If there is a generic version, does it look the same?
■ How many pills (or how much liquid) are in each dose?
■ How many times a day do I take the dose?
■ Should I take this medicine with food?
■ Can I take it with my other medicine or supplements?
Be sure to read the printed information that comes with your medicine. If you have trouble reading it,
ask a friend or family member to read it for you. For other questions about your medicines, see
page 18 of this booklet.

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NIH Publication No. 07-6287
Revised January 2008
Printed March 2008