Overcoming Cancer Pain - A guide for people with cancer, their families and friends

Page created by Alice Hughes
 
CONTINUE READING
Overcoming
Cancer Pain
A guide for people with cancer,
their families and friends

                                  Practical and
                                     support
                                   information

www.cancercouncil.com.au
Overcoming Cancer Pain
A guide for people with cancer, their families and friends

First published May 2003. This edition November 2013.
© Cancer Council Australia 2013. ISBN 978 1 921041 91 4

Overcoming Cancer Pain is reviewed approximately every three years. Check the publication date
above to ensure this copy of the booklet is up to date. To obtain a more recent copy, phone the
Cancer Council Helpline on 13 11 20.

Acknowledgements
This edition has been developed by Cancer Council NSW on behalf of all other state and territory
Cancer Councils as part of a National Publications Working Group initiative.

We thank the reviewers of this booklet: Dr Melanie Lovell, Consultant Palliative Care Physician, Senior
Lecturer, Sydney Medical School, University of Sydney, NSW; Prof Frances Boyle AM, Professor of Medical
Oncology, Mater Hospital and University of Sydney, NSW; Prof Michael J Cousins AM, Professor & Head,
Pain Management & Research Centre, Royal North Shore Hospital, NSW; Carol Kanowski, Clinical Nurse
Consultant, North Queensland Persistent Pain Management Service, QLD; Brenda Kirkwood, Helpline
Operator, Cancer Council QLD; A/Prof Odette Spruyt, Director, Pain and Palliative Care, Peter MacCallum
Cancer Centre, VIC; and Sally White, Consumer.

Thank you to Natalie Marie, who contributed to the development of the pain management resources
information, particularly pages 16–17 and 54–55.

Original writers: Dr Melanie Lovell and Prof Frances Boyle AM
Editor: Laura Wuellner. Designer: Luisa Chisari. Printer: SOS Print + Media Group

Note to reader
Always consult your doctor about matters that affect your health. This booklet is intended as a general
introduction to the topic and should not be seen as a substitute for medical, legal or financial advice.
You should obtain appropriate independent professional advice relevant to your specific situation and
you may wish to discuss issues raised in this book with them.

All care is taken to ensure that the information in this booklet is accurate at the time of publication.
Please note that information on cancer, including the diagnosis, treatment and prevention of cancer,
is constantly being updated and revised by medical professionals and the research community.
Cancer Council Australia and its members exclude all liability for any injury, loss or damage incurred
by use of or reliance on the information provided in this booklet.

Cancer Council NSW
Cancer Council is the leading cancer charity in NSW. It plays a unique and important role in the fight
against cancer through undertaking high-quality research, advocating on cancer issues, providing
information and services to the public and people with cancer, and raising funds for cancer programs.
This booklet is funded through the generosity of the people of NSW. To make a donation to help
defeat cancer, visit Cancer Council’s website at www.cancercouncil.com.au or phone 1300 780 113.

Cancer Council NSW
153 Dowling Street, Woolloomooloo NSW 2011
Cancer Council Helpline 13 11 20
Telephone 02 9334 1900 Facsimile 02 9334 1741
Email feedback@nswcc.org.au Website www.cancercouncil.com.au
ABN 51 116 463 846
Introduction
People with cancer don’t always have pain. However, some people
may have pain due to the cancer, its treatment, or other conditions
that are unrelated to the cancer.

There are many ways to manage pain. Ask your health care team
to help you control your pain and discomfort.

We hope this booklet will give you useful information to help you
understand pain and manage it with different treatments. However,
it is not intended to take the place of good communication between
you and the health professionals caring for you. You need to talk to
your doctor, nurse or pharmacist about pain relief.

You may also be interested in watching the Overcoming Cancer Pain
DVD, available in some states and territories. Contact your local
Cancer Council office for details.

  If you’re reading this booklet for someone who doesn’t understand
  English, let them know that Cancer Council Helpline 13 11 20 can
  arrange telephone support in different languages.

How this booklet was developed
This information was prepared by specialists working in pain
management, oncology and palliative care. It is based on the
Cancer Pain Education project, sponsored by the Friends of the
Mater Foundation, and reflects clinical practice guidelines for the
management of pain in people with cancer. People affected by
cancer also contributed to this resource.
Contents
Key questions.................................................................... 4
What is pain?......................................................................................... 4
What is cancer pain? Does everyone with cancer have it?................... 4
What can cause cancer pain?............................................................... 5
What types of pain are there?............................................................... 6
What affects pain?................................................................................ 8
How can cancer pain be treated?......................................................... 9
When can I use pain relief?................................................................. 10
Is palliative care the same as pain management?.............................. 11
Who helps manage my pain?.............................................................. 12
Key points........................................................................................... 14

Describing pain and discomfort..................................... 15
Keeping a pain diary............................................................................ 17

Cancer treatments for pain relief................................... 18
Using pain medications....................................................................... 19
Medication safety information............................................................. 22

Treating mild pain............................................................ 24
Paracetamol........................................................................................ 24
Non-steroidal anti-inflammatory drugs (NSAIDs) ............................... 24

Treating moderate to severe pain.................................. 26
Opioids................................................................................................ 26
Common questions about opioids...................................................... 30
Non-opioid medications...................................................................... 34
Key points........................................................................................... 36
When pain won’t go away............................................... 37
Epidural or spinal medication.............................................................. 37
Nerve block......................................................................................... 38

Non-medication options................................................. 39
Allied health care................................................................................. 39
Complementary therapies................................................................... 39

Making treatment decisions........................................... 42
Talking with doctors............................................................................ 43
Taking part in a clinical trial................................................................. 44

Seeking support.............................................................. 45

Caring for someone in pain............................................ 47
Questions you may like to ask............................................................ 47

Websites and references................................................ 49
Question checklist........................................................... 50
Glossary........................................................................... 51
Pain diary.......................................................................... 54
How you can help............................................................ 56
Key questions
    Q: What is pain?
    A: Pain is not just a sensation that hurts. It is an unpleasant
          sensory and emotional experience associated with actual or
          possible tissue damage.1

          People experience pain in individual ways. The way pain is felt
          and how it affects people is influenced by physical, emotional
          and environmental factors (see page 8). These act directly or
          indirectly on the body’s nervous system (the brain, spinal cord
          and nerves). Doctors assess these factors to help treat the pain.

          You may have pain occasionally or often. It may be steady,
          throbbing, stabbing, aching or pinching. Pain can cause
          discomfort, distress or agony. If left untreated, it can also result
          in anxiety or depression. However you feel pain, it is personal
          and only you can describe or define it.

    Q: What is cancer pain? Does
       everyone with cancer have it?
    A: Cancer pain is a broad term for different kinds of pain that
          people may experience when they have cancer.

          Not everyone with cancer has pain – about one in three
          people who are treated for cancer experience pain after
          treatment.2 These people may not be in pain all the time –
          it may come and go. Pain is more common with advanced
          cancer. About six out of 10 people with advanced cancer say
          they have pain.2

4   Cancer Council
Your experience of pain
  The way you feel cancer pain       Pain can have a huge impact
  depends on several factors,        on your life, preventing you
  such as the type of cancer you     from doing the things you want
  have, its stage, the treatment     to do or normally do.
  you receive, other health
  issues, your attitudes and         Learning to control pain may
  beliefs about pain, and the        allow you to return to many of
  significance of the pain to you.   the activities you enjoy.

Q: What can cause cancer pain?
A: People with cancer have pain for a variety of reasons. It may
     be caused by the cancer itself, from treatment or another
     cause. Some reasons for pain occurring can include:
     • a tumour pressing on organs, nerves or bone
     • a bone fracture if the cancer has spread
     • side effects from chemotherapy, radiotherapy or surgery
     • poor circulation due to blocked blood vessels
     • blockage of an organ or tube in the body, such as the bowel
     • infection or swelling and redness (inflammation)
     • muscle stiffness from tension or inactivity
     • poor posture causing back pain.

     Pain can occur in more than one area of the body at once.
     Although it is more common in people with advanced cancer
     (metastatic or secondary cancer), increasing pain doesn’t
     necessarily mean that the cancer is getting worse or spreading.

                                                            Key questions   5
If your pain is getting worse, talk to your health care team about its
    causes and any fears you may have.

    Q: What types of pain are there?
    A: There are many types of pain. Pain can be described or
          categorised depending on what parts of the body are affected
          or in terms of how long-lasting your pain experience is.

          • Acute pain – Severe pain that lasts a short time only,
            possibly for days or weeks. It usually occurs because the
            body is hurt or strained in some way. The pain generally
            disappears when the body has healed.

          • Chronic pain – Pain that lasts for three months or more.
            Chronic pain may be due to an ongoing problem, but it can
            develop even after any tissue damage has healed.

          • Breakthrough pain – A flare-up of severe pain that can
            occur despite taking medication. It may happen because
            the dose of medication is not high enough or because the
            pain is worse at different times of the day or after certain
            activities. Doctors can prescribe extra doses or a different
            medication for this – see page 33 for more information.

          • Soft tissue pain – Caused by damage to or pressure on an
            organ or muscle. It may be hard to describe exactly where
            the pain is, but it tends to be sharp, aching or throbbing.

6   Cancer Council
• Nerve pain – Caused by pressure on nerves or the spinal
     cord, or damage to nerves. It is also called neuropathic
     pain. People often describe it as burning or tingling, or the
     sensation of ‘pins and needles’.

   • Bone pain – Caused by the spread of cancer into the
     bones, which damages bone tissue in one or more areas.
     People often describe it as aching, dull or throbbing, and it
     may be worse at night.

   • Referred pain – Pain is felt away from the site of the
     problem (e.g. a swollen liver can cause pain in the right
     shoulder). This is different to localised pain, which occurs
     directly where there’s a problem (e.g. pain in the back due
     to a tumour pressing on nerves in that area).

   • Phantom pain – A strange sensation of pain in a body
     part that is no longer there, such as breast pain after the
     breast has been removed. This type of pain is very real to
     those who experience it. It can usually be controlled with
     specialised pain relief used for nerve pain.

    I had some numbness and pain in my hands from
one of the chemotherapy drugs. Doing hand stretches
and exercises, and soaking my hands in warm water,
helped. The doctors stopped that drug so the numbness
wouldn’t become permanent.        Ann

                                                        Key questions   7
Q: What affects pain?
    A: As well as the cause of the pain itself, your emotions, your
          environment and your fatigue levels can affect how you feel
          and react to pain.

          It’s important for your health care team to understand the
          way any physical, emotional and environmental factors are
          impacting on you.

          • Emotions – People often have an emotional reaction to
            pain. You may feel worried, depressed or easily discouraged
            when you’re in pain. Some people feel hopeless, helpless,
            isolated, embarrassed, inadequate, irritable, angry, frightened
            or frantic.

             Ongoing pain can cause anxiety and depression, and
             these emotions can make the pain even worse. This does
             not mean that pain is all in the mind, but it is important to
             look at the emotional causes and effects of pain as much
             as the physical ones.

          • Environment – Things and people in your environment –
            at home, at work and elsewhere – can have a positive or
            negative impact on your pain. For example, worrying about
            a child who is being bullied can increase your pain.

          • Fatigue – Extreme tiredness can make it harder for you
            to cope with pain. Lack of sleep can increase your pain. Ask
            your doctor or nurse for help if you are not sleeping well.

8   Cancer Council
Q: How can cancer pain be treated?
A: There are many ways of treating both acute and chronic
    cancer pain. Treatment depends on the cause of the pain,
    but relief is still available even if the cause is unknown.

    Treatments include the same methods used to treat cancer,
    such as:
    • surgery, radiotherapy and chemotherapy (see page 18)
    • medications and other treatments specifically for pain
      (see pages 24–36)
    • a range of non-medication methods, such as physiotherapy
      and complementary therapies (see pages 39–41).

    Many people find a combination of treatments helps, but
    everyone is different, so it might take time to find the right
    pain relief. It can take a few weeks for you to feel the benefits
    of some treatments, so in the meantime you will usually be
    given a form of strong pain medication.

    Different things might work at different times, so it is
    important to persist in finding the best options for you.
    When you’re tired, you might need some relief that doesn’t
    take much effort, such as a heat pack. It may also be beneficial
    to try relaxation or meditation exercises after you have taken
    some medication.

    Sometimes it’s not possible to completely control all pain.
    You may still feel some discomfort. However, your health
    professionals can help make you as comfortable as possible.

                                                          Key questions   9
Try various pain relief methods more than once. If it doesn’t work
     the first time, try it a few more times before you give up. If you’re
     taking medication that doesn’t seem to work or has stopped
     working, talk to your doctor – don’t change the dose yourself.

     Q: When can I use pain relief?
     A: You can use different types of pain relief whenever you feel
           any level of pain.

           It is not true that having cancer means you will experience
           pain. If you have pain, there is no advantage to being brave
           or stoic, it’s better to get help and relief.

           It’s important not to let your pain get out of control before
           doing something about it. The sooner and more effectively
           the pain is treated, the less likely it will be a long-term
           problem. If pain lasts longer than a few days without much
           relief, see your doctor for advice.

           Many people try to avoid taking pain medication thinking
           it is better to hold out for as long as possible. However
           this usually makes the situation worse. It is better to take
           medication as prescribed rather than just at the time you
           feel the pain.

           Your doctor can talk about dosages and how often to take
           pain relief.

10   Cancer Council
Linda’s story
  My husband, Steve, was            I nursed Steve at home but
  diagnosed with cancer of          took him to hospital for chemo.
  unknown primary. It started off   I gave him injections to help
  with a sore back. Then he had     control his pain. We also had a
  trouble walking and the pain      palliative care nurse visit every
  was unbearable.                   day. He was excellent and
                                    became like a friend.
  The doctors said the cancer
  was inoperable and untreatable,   I also couldn’t have faulted the
  but they gave my husband          nursing staff at the palliative
  chemotherapy and radiation to     care unit. They helped ease
  relieve his pain and to reduce    Steve’s other symptoms, such
  the size of the secondary         as constipation, as well as
  tumour on his spine.              giving me respite.

Q: Is palliative care the same as
   pain management?
A: To ‘palliate’ means to relieve. Palliative care includes many
     aspects, one of which is pain management.

     The palliative care team includes doctors, nurses, social
     workers, physiotherapists, occupational therapists and
     pastoral care workers. They work to maintain your quality of
     life by easing symptoms of cancer, without trying to cure the
     disease. This includes:
     • helping you with pain relief
     • reducing your stress

                                                          Key questions   11
• working with you to relieve other symptoms caused by
             cancer, such as nausea, constipation or breathlessness
           • focusing on addressing emotional, practical and spiritual
             needs to aid your comfort
           • helping you maintain your independence for as long
             as possible.

           Your hospital doctor or nurse can put you in touch with a
           palliative care team for treatment in hospital, and your general
           practitioner (GP) can refer you to a community palliative care
           team so you can have treatment at home. Referral to palliative
           care is not just for end-of-life care. You can use the team when
           you need to access services. This may be for months or years.

           For more information, call Cancer Council Helpline 13 11 20
           for a free copy of the Understanding Palliative Care booklet,
           or visit your local Cancer Council website.

     Q: Who helps manage my pain?
     A: Different health professionals work together in a team to
           help manage your pain. This is called a multidisciplinary
           team (MDT) approach. The MDT may include some of the
           professionals listed on the opposite page.

           If your pain is not well controlled, ask your GP or palliative
           care physician whether a referral to a pain medicine specialist
           would be helpful for your type of pain. These specialists often
           work in a pain clinic.

12   Cancer Council
Health professional      Role

general practitioner     takes care of your general health and
(GP)                     coordinates specialist treatment

                         prescribes and coordinates the course of
medical oncologist
                         chemotherapy (anti-cancer medication)

                         prescribes and coordinates the course of
radiation oncologist
                         radiotherapy to treat painful areas

surgeon                  removes tumours or unblocks affected organs

                         assesses physical, emotional, social and
palliative care team
                         spiritual needs and coordinates care

                         a doctor who specialises in treating all types
pain specialist
                         of pain, particularly severe or difficult pain

                         administer medication and provide support
nurses
                         and help during all stages of your treatment

                         dispenses medications and can give advice
pharmacist
                         about drugs, dosage and side effects

physiotherapist and
                         help you with physical and practical problems
occupational therapist

                         assesses mental factors that increase your
psychologist             pain and provides psychological methods of
                         pain control

counsellor, social
                         help you with emotional and spiritual issues
worker and pastoral
                         and can advise on support services
care worker

                                                   Key questions          13
Key points

     • Not all people with cancer         your doctor to make sure
       have pain. It is more common       they don’t interfere with your
       in people who have advanced        medication or treatment.
       cancer.
                                        • Use pain relief as prescribed
     • There are many types and           when you experience pain.
       causes of pain, which are felt     You don’t need to wait until the
       in different areas of the body     pain is severe before taking
       and with different sensations.     pain-relief medication.

     • Acute pain is severe but usually • A palliative care team works to
       resolves within a few weeks        improve a person’s quality of
       or months, depending on its        life by easing the symptoms of
       cause. Chronic pain is often       cancer, without trying to cure
       constant and usually lasts for     it. Pain relief is an important
       more than three months.            part of palliative care.

     • Cancer pain has many causes, • A multidisciplinary team (MDT)
       including the after-effects of     works together to help you
       surgery, a tumour pressing         manage cancer pain. The MDT
       on a nerve or organ, side          will probably be made up of
       effects of chemotherapy or         various health professionals,
       radiotherapy, or bone pain         including nurses, specialists
       from the spread of cancer.         and allied health practitioners.

     • Pain can be treated using        • If your pain is not well
       conventional treatments and        controlled, ask your GP or
       medications. Complementary         palliative care physician if a
       therapies may also be              referral to a pain medicine
       beneficial, but check with         specialist would be helpful.

14   Cancer Council
Describing pain and
           discomfort
Describing your pain or discomfort will help your health care
team understand what you are feeling, work out the cause of the
pain, and plan the most appropriate pain management for you.
Some people find it hard to explain their pain or why they are
feeling uncomfortable, but answering these questions may help
you express this:

• In which parts of your body do you feel your pain?
• How bad is the pain? (See next page.)
• How does it compare to pain you have felt in the past?
• What does it feel like? For example, is it dull, throbbing, steady,
  constant, shooting, stabbing or burning? (Use descriptive words.)
• Are there any ‘pins and needles’ or tingling? Is there pain in
  areas where it feels numb or not quite normal?
• Does your pain spread from one area to another (radiate)?
• When did the pain or discomfort begin? (Try timing the pain.)
• Is your pain constant? If not, how often does it occur? How long
  does the pain last each time it occurs?
• Which of your daily activities does it prevent you from doing?
  (E.g. getting out of bed, getting dressed, bending down, walking,
  sitting for long periods, exercising, carrying things, driving.)
• What   activities do you think you could do or would like to do if
  the pain wasn’t there?
• How does the pain make you feel emotionally?
• What relieves your pain? What makes it worse?
• What pain relief have you tried? What helped or didn’t help?
• Did you have any side effects from the medication?
• What have you done in the past to relieve other types of pain?
• Is there anything you are worried about with respect to the pain?

                                             Describing pain and discomfort   15
Now my local general practitioner is responsible for my
pain management, and he consults the specialist if there are
problems – this makes things easier for me.       Dale

     How bad is the pain?
     Some people find that rating their pain using a scale can help them
     describe their pain. There are different kinds of scales:

     word – this rates the pain from                    number – this is from 0–10,
     none or mild through to moderate                   with the higher the number, the
     and severe                                         worse the pain
     facial – this is the use of facial                 activity tolerance – this scale
     expressions to show how the pain                   includes statements about how the
     makes you feel                                     pain affects your activities.

                                                                                       worst pain
                                                                      severe            possible
                                                        moderate       pain
                                       moderate           pain
                         mild            pain
         no              pain
        pain

          0          1     2       3       4        5      6      7       8        9       10

               no         can be       interferes     interferes      interferes   bed rest
              pain       ignored           with          with         with basic   required
                                          tasks     concentration       needs

16         Cancer Council
Keeping a pain diary
Keeping a record of your pain, what you have tried for relief
and how it has worked can help you and those caring for you to
understand more about your pain and how it can be managed.

Your health professional may give you material to fill in, or you
can use the diary on pages 54–55 as a template. Some people use
a mobile device, such as a smartphone, to keep track.

Triggers
Part of keeping a record of the pain may be noting what happens
to cause your pain. Sometimes a specific event or situation can
cause pain to occur – this is called a trigger.

Knowing what triggers your pain, might help you to prevent it or
relieve it. For example, if you know that sitting down for a long
period of time makes your back ache, you can take a dose of pain
relief before travelling or going to a movie.

Health professionals contact list
Another important part of pain management is writing a list of
the health professionals in your team and their contact details
(see pages 12–13).

Keep this list handy in case you (or your carer) need to get in
touch. For example, your pain management specialist may instruct
you to call if you need to take four or more doses of breakthrough
pain relief, or if you are feeling very nauseated or sedated. Talk to
your specialist about what should trigger you to call.

                                             Describing pain and discomfort   17
Cancer treatments for
     pain relief
     There are different ways to treat cancer pain. Treatment that is
     aimed at relieving pain, rather than curing the disease, is called
     palliation or palliative treatment.

     Depending on the cancer you have, and the location and nature
     of your pain, the treatments below may be used specifically for
     pain management.

     Surgery – An operation can relieve discomfort caused by tumours
     that obstruct organs, press on nerves or cause bleeding. Examples
     are unblocking the bile duct to relieve jaundice, which occurs in
     pancreatic cancer, or removing a painful bowel obstruction, which
     can occur with ovarian or bowel cancer.

     Radiotherapy – This treatment injures cancer cells so that
     tumours shrink and stop causing discomfort. For example,
     radiotherapy can relieve bone pain caused by the spread of cancer,
     and headaches caused by increased pressure in the brain due
     to cancer.

     Chemotherapy – Cytotoxic drugs used to kill cancer cells or slow
     their growth. In some cases, chemotherapy can’t cure cancer but
     can shrink tumours that are causing pain, such as a tumour on the
     spine that cannot be operated on.

     You may also receive other drugs, such as targeted therapies. Call the
     Helpline on 13 11 20 to learn more.

18   Cancer Council
Hormone therapy – Cancers that grow in response to chemical
messengers (hormones) in the body can often be slowed down by
taking drugs that stop the body’s production of those hormones.
The drugs may also shrink tumours that are causing discomfort,
reduce inflammation and relieve symptoms of advanced cancer,
such as bone pain. Corticosteroids are a type of hormone that
lessens swelling around a brain tumour.

Call Cancer Council Helpline 13 11 20 for more information,
including free booklets about chemotherapy and radiotherapy.

Using pain medications
Medications that relieve pain are called analgesics. They do not
affect the cause of the pain, but they can reduce pain effectively.
The medication that is best for you depends on the type of pain
you have and how severe it is.

Taking your medication regularly is the best way to prevent pain
from starting or getting worse. Some people call this ‘staying on
top of the pain’. It may mean you can use lower doses of a pain
reliever than if you wait until the pain gets bad. Don’t be afraid to
admit that you have pain.

Different pain medications take different amounts of time to
work. For some medication, it is only a few minutes. For others,
it is several hours. Some pain medication even needs to be taken
for several days or weeks before you get the best relief, so it is
important to keep taking it, even if you think it’s not working.

                                              Cancer treatments for pain relief   19
Ways medications are given

     Pain medications are given in several ways, depending on the type of
     medication and the form that it is available in.

                               This is the most common form of pain medication.
                               Take medication with water or another drink, unless
     tablet or capsule
                               the doctor tells you otherwise. Don’t take a tablet or
                               capsule with alcohol.

                               This may be an option if you have trouble swallowing
     liquid
                               tablets or for convenience.

                               These are rubbed on the inside of your cheeks and
     lozenges
                               gums until they dissolve.

                               A needle is briefly inserted into a vein (intravenously),
                               into a muscle (intramuscularly), or under the skin
     injection                 (subcutaneously). You may be able to do your own
                               subcutaneous injections, but other types must be
                               done by a doctor or nurse.

     skin patch                This gradually releases medication into the body.

     subcutaneous              Medication is slowly injected under the skin using a
     infusion                  small plastic tube and pump for many hours or days.

     intravenous               Medication is slowly injected into a vein using a small
     infusion                  plastic tube and pump over many hours or days.

     intrathecal               Liquid medicine that is delivered into the fluid
     injection or              surrounding the spinal cord. It is commonly used to
     infusion                  treat the most severe cancer pain.

                               A pellet placed in the rectum. This may be suitable
     suppository
                               for someone who has nausea or trouble swallowing.

20            Cancer Council
Pain relief from different medications varies greatly from person
to person. It also depends on how much medication you take (the
dose) and how often you take it (the frequency). A dose of pain
medication should be enough to control the pain until the next
scheduled dose.

If the pain relief is wearing off before the next dose is due, tell your
doctor or nurse. Check if you need to take larger doses to keep the
pain under control – your dose may need to change over time.

Prescription and non-prescription medications
Mild pain relief is available from chemists and supermarkets
without a prescription. These are known as over-the-counter or
non-prescription medications.

Stronger pain medications need a prescription, which means a
doctor authorises you to have them (prescribes them). Only a
pharmacist can give (dispense) them to you. If you’re in hospital,
medications are organised by pharmacists and nurses there.

  Generic and trade names
  Medications have a generic         often has more than one trade
  name, which identifies the         name, as different companies
  chemical compounds in the          may produce it.
  drug, and a trade name, which
  is the manufacturer’s version      For a list of generic and trade
  of the drug. A medication          names of opioids, see page 27.

                                               Cancer treatments for pain relief   21
Medication safety information
     You should take precautions when managing or storing your
     medications to avoid potential dangerous mix-ups.

     Medicines come in many forms, so you may be taking other
     substances that you didn’t realise were considered medication.
     For instance, vitamin supplements and herbal remedies are
     considered medications.

     Ask your doctor, nurse or pharmacist about taking any
     other medications at the same time as your pain relief. This is
     because different medications may react with each other, stop
     the substance from working properly in the body, or cause
     dangerous side effects.

     • Many pills for colds and flu, and other over-the-counter
       medications, can be taken with analgesics without any harmful
       effects. However, some over-the-counter medications contain
       pain relievers, so a lower dose of pain medication may be needed.

     • Medications for colds, menstrual (period) pain, headaches and
       joint or muscle aches often contain a mixture of drugs, including
       aspirin. People receiving chemotherapy should avoid aspirin
       because it increases the risk of internal bleeding. Any minor cuts
       are likely to bleed a lot and not stop bleeding (clot) very quickly.

     • Over-the-counter medications for allergies may cause drowsiness,
       as can some pain medications. Taking them together can make it
       dangerous to drive or to operate machinery.

22   Cancer Council
• Ask your doctor, nurse              • Check whether it is safe to
  or pharmacist for written             take any complementary
  information about your pain           medicines, such as nutritional
  medications: what they are            supplements, together with
  for, when and how to take             your pain medication.
  them, possible side effects
  and what you can do about
                                      • For independent information
                                        about your medications,
  side effects.
                                        call the National Prescribing
• Keep medications in their             Service Medicines Line on
  original packaging so you and         1300 633 424.
  other people always know
  what they’re for.
                                      • Keep track of all of your
                                        medications by using a list or
• Store medication in a safe            a smartphone app, such as
  place that is out of reach            the NPS Medicinewise app.
  of children.                          See www.nps.org.au.

• If you’re worried about             • If you suspect you’ve had
  forgetting to take medications,       a reaction to any kind of
  write a note for yourself, set an     medicine, call the Consumer
  alarm or program a reminder           Adverse Medications Event
  on your phone rather than             Line on 1300 134 237 and
  leaving out pills.                    tell your health care team
                                        immediately.
• Regularly check the expiry
  dates of medications. If
  they are near or past their
  expiry, see your doctor for
  a new prescription.

• Take old medications to
  the pharmacy to dispose of
  them safely.

                                              Cancer treatments for pain relief   23
Treating mild pain
     Medications used to control mild pain include paracetamol and
     non-steroidal anti-inflammatory drugs (NSAIDs). These types of
     drugs are excellent at relieving certain types of pain, such as bone
     pain, muscle pain and pain in the skin or the lining of the mouth.

     They can also be used with other pain medications to help relieve
     moderate to severe pain.

     Paracetamol
     Paracetamol is a common drug that comes in many different
     formulations. An adult should not take more than 4g of paracetamol
     a day unless their doctor says it’s okay. The dose limit for children
     depends on their age and weight, so check with the doctor, nurse
     or pharmacist.

     Some combination pain relievers, such as Panadeine® Forte,
     contain paracetamol and count towards your total intake. If taken
     within the recommended dose, paracetamol is unlikely to cause
     side effects.

     Non-steroidal anti-inflammatory
     drugs (NSAIDs)
     NSAIDs, such as ibuprofen, naproxen and diclofenac, vary in
     dose, frequency of dose and side effects.

     They can cause indigestion or stomach ulcers in some people, and
     can increase the risk of bleeding in the stomach or intestines.

24   Cancer Council
Some studies show that NSAIDs can lead to heart (cardiac)
problems, especially with prolonged use or in people who already
have cardiac problems.3

Talk to your doctor or nurse before taking NSAIDs, especially
if you have had stomach ulcers, heart disease, get reflux, are
having chemotherapy or are taking other medications (such as
anticoagulants/blood thinners like warfarin) that also increase
your risk of bleeding. You may be given other medication that
is less likely to cause indigestion and bleeding, such as celecoxib
(another type of NSAID) or paracetamol.

     I could not believe how much better I felt after taking
some pain relief. Everything seemed less stressful and I did
not feel so angry and upset all the time. I had resisted taking
anything for so long. I thought I should be able to handle the
pain. I now wish I had taken something sooner.          Bill

                                                        Treating mild pain   25
Treating moderate
     to severe pain
     Opioids are generally used for pain that is hard to ignore or feels
     very severe. Moderate pain may be a pain score of 4–6 (out of 10),
     and moderate to severe pain may be a score of 6–10.

     Opioids
     There are many different types of opioids, which are always
     prescribed by a doctor.

     Some opioids, such as codeine, are used for moderate pain. Codeine
     relieves pain by being broken down in the body into morphine.
     However, some people cannot convert codeine, so they don’t get any
     pain relief from it. If taking Panadeine® or Panadeine® Forte feels like
     it has the same effect as paracetamol, inform your doctor. You may
     need other opioids.

     Strong opioids, such as morphine, oxycodone, hydromorphone,
     methadone and fentanyl, are safe and effective for moderate to
     severe pain. These drugs are listed in the table opposite. Fentanyl,
     for example, is mainly used for severe pain that is fairly constant,
     or in lozenge form for rapid relief of breakthrough pain. Targin®
     is a combination of oxycodone and another drug, naloxone. Using
     naloxone eases constipation, a common side effect of opioids.

     The dose of opioid is worked out for each person to match their
     pain level. You may start at a low dose and build up gradually until
     you reach the right dose.

26   Cancer Council
Generic and trade names for common opioids
Generic name    Trade names                  Form

                Ordine®                      liquid immediate release
                Anamorph®                    tablet immediate release
                Sevredol   ®                 tablet immediate release
morphine
                MS Contin®                   tablet slow release
                Kapanol    ®                 capsule slow release
                MS Mono®                     capsule slow release
                OxyNorm®                     liquid/capsule immediate release
                Endone®                      tablet immediate release
oxycodone       Proladone®                   suppository immediate release
                Oxycontin      ®             tablet slow release
                Targin®                      capsule slow release
                Dilaudid ®                   liquid immediate release, tablet
                                             immediate release or tablet
hydromorphone                                slow release
                Jurnista®                    tablet slow release
methadone       Physeptone         ®
                                             tablet, liquid
                Tramal/Tramal SR®            capsule immediate/slow release
tramadol
                Zydol/Zydol SR         TM
                                             capsule immediate/slow release
tapentadol      Palexia®                     capsule immediate/slow release
                Durogesic®                   skin patch slow release
fentanyl
                Actiq®
                                             lozenge immediate release
                Norspan®                     skin patch slow release
buprenorphine
                Temgesic       ®             lozenge

                                            Treating moderate to severe pain    27
Side effects
     Opioids can affect people in different ways. It can take a few days
     to adjust to taking strong pain medications. You may have some of
     the following side effects:

     • Drowsiness – Feeling sleepy is typical, but this usually only
       lasts for a few days until the pain relief dose is stable. Tell your
       doctor or nurse if it lasts longer.

     • Tiredness – Your body may feel physically tired, so you may
       need to ask family or friends to help you with household tasks
       or your other responsibilities. Rest is important, but it’s also
       beneficial to do some light exercise or activity, such as stretches
       or walking in the garden or to the letterbox. This helps you
       maintain a level of independence and can give you some energy.

     • Feeling sick – This passes when you get used to the dosage or
       can be relieved with other medication.

     • Constipation – Most people regularly taking opioid medications
       need a laxative. Drinking plenty of water, eating a high-fibre diet
       and getting some exercise also help reduce constipation.

     • Itchy skin – If you have itchy skin, sometimes it may feel so
       irritating that it seems painful. Ask your doctor if there is an
       anti-itch medication available, or if you can try a different
       opioid for your pain.

     • Dry mouth – Chewing gum or drinking plenty of liquids helps.

28   Cancer Council
• Poor appetite – You may not feel like eating. Small, frequent
  meals or snacks and supplement drinks may help.

• Confusion or hallucinations – This is rare, so tell your doctor
  if it occurs.

Side effects can occur when you stop taking opioids suddenly
too. These are sometimes called withdrawal symptoms or a
withdrawal response.

To reduce the chance of side effects when you stop taking
opioids, your doctor will reduce your dose gradually to allow
your body to adjust to the change in medication. It is important
not to reduce your dose or stop taking opioids without talking to
your doctor first.

  Differing opinions about pain management
  Families and friends sometimes     family about the prescription,
  have different opinions about      and explain why they have
  pain relief. Your family members   recommended a particular
  may feel anxious about you         treatment for you.
  taking strong pain medication,
  or disagree with it (perhaps       Tell your family about your pain
  because they are worried that      and how you are feeling. It may
  you will become addicted).         help to explain that keeping
                                     the pain under control allows
  If this happens, have the          you to enjoy your time with
  medical staff talk to your         them and remain comfortable.

                                              Treating moderate to severe pain   29
Common questions about opioids
     Most people have questions about taking opioid medications. Some
     common questions are answered on the following pages. Your pain
     specialist or nurse can also discuss any concerns you have.

     If you are caring for someone with cancer pain, you may have
     some other specific questions about opioids. For some answers to
     common questions, see pages 47–48.

     Q: Will I become addicted to opioids?
     A: No – people taking morphine or other opioids to relieve
         pain do not become addicted. However, after some time, the
         body gets used to opioids and if they are stopped suddenly,
         you may get withdrawal symptoms (see page 29). This is
         normal and is not the same as an addiction.

         However, a person who has previously had a drug addiction
         problem may be at risk of addiction to opioids, if they are later
         used for cancer pain relief.

         Using opioids regularly for pain relief is practical and not
         considered an addiction. Your doctor will monitor your dosage
         to maintain effective pain relief and avoid potential side effects.

     Taking opioids for pain relief is different to an addiction. Someone
     with a drug addiction problem takes drugs to satisfy physical or
     emotional needs, despite the drugs causing harm.

30   Cancer Council
Patient-controlled analgesic system
   In some situations, patients
   may use a computer-controlled
   system to deliver effective
   and safe doses into the vein
   whenever they need pain relief.
   This is called patient-controlled
   analgesia (PCA), and is used
   in hospitals.

   It is not possible to overdose
   using this system, as the
   machine will not deliver
   further doses until it is safe
   to do so.

Q: Will I need to have injections?
A: Not necessarily. Strong pain relievers are usually given
   by mouth in either liquid or tablet form. If you’re vomiting,
   opioids can be given via the rectum as a suppository, by
   a small injection under the skin (subcutaneously), using a skin
   patch or in lozenge form.

   Opioids can be injected into a vein for short-term pain
   relief, such as after surgery. This is called intravenous opioid
   treatment and it is given in hospital.

                                            Treating moderate to severe pain   31
Q: Will the opioids still work if I get used to them?
     A: Rarely, people who have used opioids for a long time may
         become tolerant to their original dose. Their doctor will need
         to increase the dose to keep their pain under control.

         Your dose of opioids may also be increased if your pain gets
         worse. There is no benefit in saving the pain control until the
         pain is severe.

         However, cancer treatment may make your pain better and you
         may end up needing less pain medication or even none. If your
         pain levels decrease or you no longer need opioids, your dose
         will be reduced gradually to avoid side effects that may occur
         if you were to stop taking medication suddenly.

     The World Health Organization estimates that the right medication,
     in the right dose, given at the right time, can relieve 80–90% of
     cancer pain.4

     Q: Can I stop my medication at any time?
     A: If your pain gets better, morphine and other opioids should be
         reduced slowly before stopping them completely. It is
         important not to stop taking opioids suddenly because this
         can cause side effects, such as flu-like symptoms or nausea.

         You should only reduce your dose or stop taking opioids in
         consultation with your health care team.

32   Cancer Council
Q: Can I drive while using opioids?
A: Doctors have a duty to advise patients not to drive if they
   are a risk to others. During the first days of treatment, you
   might be less alert, so driving is not advisable. Once the dose
   is stabilised, you may want to consider driving. Seek your
   doctor’s advice and keep the following in mind:

   • Don’t drive if you’re tired, have been drinking alcohol, are
     taking other medication that makes you drowsy, or if road
     conditions are bad. Avoid driving at night or long distances.

   • If you have a car accident while under the influence of a
     drug, your insurance company may not pay out a claim.

   • Special rules and restrictions apply to people with brain
     tumours, including secondary brain cancer, or people who
     have had seizures.

Q: What if I get breakthrough pain?
A: You might get a flare-up of pain even though you’re taking
   regular doses of medication. Breakthrough pain may last
   only a few seconds, several minutes or hours. It can occur if
   you’ve been more active than usual or you’ve strained yourself.
   Sometimes there seems to be no reason for the extra pain.

  Your medical team can prescribe you medication for breakthrough
  pain. Slow-release opioids must not be taken for breakthrough pain.

                                            Treating moderate to severe pain   33
You need to talk to your health care team who will advise
           you on how to cope with breakthrough pain. Usually it’s
           okay to take extra, or top-up, doses of a short-acting opioid
           (immediate release opioid), which will be prescribed in
           addition to your regular medication. The doses work fairly
           quickly, in about 30–40 minutes.

           It is helpful to keep a record of how many extra doses you need
           so your doctor can monitor your overall pain management.
           If you find your pain increases with some activities, taking an
           extra dose of medication beforehand will allow you to enjoy that
           activity more.

     I have an intrathecal pump, which is filled every 10 days
by a community nurse. I also take breakthrough medication,
but some days I don’t need any. You can never tell. The pain
is mysterious.       Kate

       Non-opioid medications
       The following drugs work on certain kinds of pain and might be
       prescribed with opioids to help you get the best pain relief. They
       are usually given by mouth or vein.

       Some of the drugs take a few days to work, so opioids are used to
       control the pain in the meantime. If you are taking another drug,
       it may be possible to lower the dose of the opioids, reducing side
       effects without losing control of the pain.

34     Cancer Council
Drug type (class)              Generic names              Type of pain

                               •   amitriptyline          burning nerve pain,
                               •   doxepin                peripheral neuropathy pain,
antidepressant
                               •   nortriptyline          burning, electric shocks
                               •   duloxetine

                               •   carbamazepine          burning or shock-like
                               •   valproate              nerve pain
anticonvulsant
                               •   gabapentin
                               •   pregabalin

                               • lorazepam                muscle spasms
anti-anxiety                   • diazepam                 accompanying severe pain
                               • clonazepam
                               • prednisone               headaches caused by
steroid                        • dexamethasone            cancer in the brain, or pain
                                                          from nerves or the liver

                               • pamidronate              may help prevent bone
bisphosphonates                • clodronate               damage from cancer and
                               • zoledronate              help control bone pain

                               • baclofen                 muscle spasm, especially
GABAß
                                                          with spinal cord injury

human                          • denosumab                may help prevent bone
monoclonal                                                damage from cancer and
                                                          help control bone pain
antibody

local anaesthetic*             • lignocaine               severe nerve pain

NMDA blocker*                  • ketamine                 severe nerve pain

*requires careful monitoring

                                                   Treating moderate to severe pain      35
Key points

     • Surgery, chemotherapy,              4–6 (out of 10), and moderate
       radiotherapy and hormone            to severe pain may be a score
       therapy are used to relieve         of 6–10.
       pain, usually by removing or
       shrinking the tumour, or by       • Medications can be given
       stopping its growth. For other      in the form of tablet, liquid or
       types of pain, or while these       lozenge, skin patch, injection
       treatments are taking effect,       or suppository.
       medications are usually given.
                                         • Different medications may
     • Take precautions when               cause different side effects. Tell
       managing or storing your            your doctor or nurse about side
       medications to avoid potential      effects you expericence so they
       dangerous mix-ups.                  can help you manage them.

     • Pain relief can be mild, such     • Other medications, such as
       as paracetamol and non-             antidepressants or steroids,
       steroidal anti-inflammatory         may also be given with
       drugs (NSAIDs), or strong,          opioids to make them work
       such as opioids.                    more effectively.

     • Medications used to control       • Most people (and their
       mild pain include non-steroidal     families) have questions about
       anti-inflammatory drugs             taking pain medications.
       (NSAIDs) and paracetamol.           Discuss any concerns you
                                           have, such as driving or
     • Opioids are generally used          breakthrough pain, with your
       for pain that is hard to ignore     health care team.
       or feels very severe. Moderate
       pain may be a pain score of

36   Cancer Council
When pain won’t
           go away
Sometimes pain can be difficult to relieve completely with
medications. This may be the case both for people with cancer and
for those who have responded well to cancer treatment and are in
remission. In these situations, your doctor may suggest you go to
a pain medicine specialist in a multidisciplinary pain clinic.

Epidural or spinal medication
Sometimes, to control pain, morphine needs to be used in such
high doses that severe side effects occur. Delivering the morphine
directly onto the nerves in the spine via a tube (catheter) can give
good pain relief with fewer side effects. Other drugs can also be
added to improve pain control. Spinal medication can be given in
a number of ways:

• Tunnelled epidural catheter – A small tube put in the space
  around the spinal cord and then tunnelled out to the body’s surface
  through the skin. It is attached to an external syringe pump,
  which delivers the medication (e.g. anaesthetic and/or opioid).
  Medication may be delivered in a single dose, as a continuous
  infusion, or using a combination of these methods.

• Port-a-cath spinal system – Similar to the tunnelled catheter,
  but medication is delivered through an opening (port) that is
  attached to the tube under the skin of the chest or abdomen.

• Intrathecal catheter and pump – Implanted in the fatty tissue
  of the abdominal area. The pump is refilled every three months
  with a needle through the skin into the pump’s port.

                                                 When pain won’t go away   37
Nerve block
     When certain substances are injected into or around a nerve, that
     nerve is no longer able to send (transmit) pain messages. This is
     called a nerve block. Sometimes nerves to part of the bowel or
     pancreas can be blocked to give pain relief, especially in pancreatic
     cancer. This is called a coeliac plexus block.

        Other pain-relief methods
        Your specialist may suggest one or more of the following options:

        • intensive cognitive               nerves that are causing
          behavioural therapy (CBT) –       pain, and is used for back
          guides people to positively       and neck pain due to
          change the way they cope          osteoarthritis (breakdown of
          with their pain and to resume     cartilage between joints)
          normal activity as much
                                        •   neuromodulation
          as possible
                                            treatments – change nerve
        • desensitisation – a technique     activity through electrical
          that involves focusing on the     pulses that cause the body
          pain but relaxing at the same     to release a substance that
          time, used for neuropathic        stops feelings of pain relating
          pain (e.g. numbness, tingling     to nerve damage (e.g. after
          or burning)                       surgery, chemotherapy or
                                            radiotherapy, and for
        • specialised physiotherapy –
                                            non-cancer causes)
          helps reprogram the brain
          (e.g. dealing with phantom     • surgery on the brain or
          limb pain after an amputation)   spinal cord – in rare cases,
                                           neurosurgery can be done to
        • radiofrequency treatment –
                                           help relieve pain.
          uses heat to destroy the

38   Cancer Council
Non-medication
           options
For many people, some types of pain can be relieved without
medication or hospital treatment. They may benefit from services
offered by allied health professionals or complementary therapists.

Allied health care
There are many types of allied health carers who support the work
of doctors and nurses. Practitioners are usually part of your
hospital MDT, or your GP can refer you to private practitioners as
part of a chronic disease management plan, such as:
• physiotherapy, which can be an important part of your care so
  that you learn the best ways to sit and lie to relieve pressure,
  improve circulation and reduce swelling
• emotional   support through counselling, which can help relieve
  anxiety and depression that may be contributing to pain
• a dietitian, who can advise you on dietary changes to relieve
  pain caused by eating or digestive problems, such as mouth
  ulcers, bloating or constipation.

Complementary therapies
Complementary therapies may boost your wellbeing and
help you to cope better with pain and other side effects caused
by cancer and its treatment. These therapies may increase
your sense of control, decrease stress and anxiety, and improve
your mood.

There are many types of complementary therapies. See page 41
for a list of therapies.

                                                 Non-medication options   39
Imagery is one technique that can be used to distract your mind
       from pain or worries, or make you feel more in control of what is
       happening to your body. It involves using your imagination to think
       of shapes, colours, sounds – anything that helps you feel like you
       are in a particular place.5

       Some therapies, such as hypnotherapy, require you to have a
       consultation with a professional therapist. For others, such as
       imagery, you can use CDs or DVDs at home, but it may be useful
       to seek some guidance to learn these techniques safely. Friends or
       family may also be able to help you – for example, by giving you
       a gentle massage or doing relaxation with you.

       Let your doctor know about any complementary therapies you
       are using or thinking about trying. This is important, as some
       therapies may not be appropriate depending on your conventional
       treatment and the pain medications you are taking. You should
       also tell the complementary therapist about any pain, as some
       therapies, such as massage and exercise, may need to be modified
       to accommodate the changes in your body.

       For more information about complementary therapies, call Cancer
       Council Helpline 13 11 20.

      Distraction and keeping your sense of humour are
really important. I get a funny video or go out as much as
I can.       Samantha

40     Cancer Council
Some complementary therapies that may reduce pain

                Relieves pain or keeps it from getting worse by
                reducing tension in the muscles. It can help you fall
relaxation      asleep, give you more energy, reduce your anxiety,
                and make other pain-relief methods – such as
                medication or a cold pack – work more effectively.

                Focuses on breathing techniques and quietening
                the mind. Mindful meditation encourages people
                to become more aware of their body, thoughts and
meditation
                surroundings. Visualisation draws on your imagination
                to produce pleasant thoughts to take the mind off the
                pain and give a more hopeful outlook.

                A relaxing therapy that may increase your sense
                of wellbeing. It helps relieve muscle spasms and
massage         contractions, and joint stiffness. Aromatherapy is a
                type of massage using aromatic oils that are soothing
                and calming. This can be helpful if you are in pain.

art therapy,    These help people emotionally by allowing them
                to express their feelings in different ways. The
music therapy
                techniques also provide some distraction from the
and journal
                pain. You can be creative at home, or some hospitals
writing         and support groups offer professionally run programs.

                A mild electric current is applied to the skin. This
TENS            produces a pleasant sensation and relieves some
                pain. Many physiotherapists offer this treatment.

                                            Non-medication options      41
You can also read