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Understanding cancer pain


Overview

Page last updated: September 2024

The information on this webpage was adapted from Understanding Cancer Pain - A guide for people with cancer, their families and friends (2024 edition). This webpage was last updated in September 2024.

Expert content reviewers:

This information was developed based on Australian clinical practice guidelines and with help from specialists working in pain management, oncology and palliative care, and people affected by cancer. All updated content has been clinically reviewed by:

  • Professor Paul Glare, Chair of Pain Medicine, Northern Clinical School, Faculty of Medicine and Health, The University of Sydney, NSW; and
  • Dr Tim Hucker, Pain Specialist, Northern Beaches Hospital, Director, Northern Beaches Pain Management, NSW.

This edition is based on the previous edition, which was reviewed by the following panel:

  • Dr Tim Hucker (see above)
  • Dr Keiron Bradley, Palliative Care Consultant, Bethesda Health Care, WA
  • A/Prof Anne Burke, Co-Director Psychology, Central Adelaide Local Health Network, President, Australian Pain Society, Statewide Chronic Pain Clinical Network, SA, School of Psychology, The University of Adelaide, SA
  • Tumelo Dube, Accredited Pain Physiotherapist, Michael J Cousins Pain Management and Research Centre, Royal North Shore Hospital, NSW
  • Prof Paul Glare (see above)
  • Andrew Greig, Consumer
  • Annette Lindley, Consumer
  • Prof Melanie Lovell, Palliative Care Specialist HammondCare, Sydney Medical School and The University of Technology Sydney, NSW
  • Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA
  • Melanie Proper, Pain Management Specialist Nurse Practitioner, Royal Brisbane and Women’s Hospital, QLD
  • Dr Alison White, Palliative Medicine Specialist and Director of Hospice and Palliative Care Services, St John of God Health Care, WA

What is pain?

Pain is an unpleasant physical feeling.  The International Association for the Study of Pain defines it as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage”.

When there is damage to any part of your body, nerves in that part of the body send messages to your brain. When your brain receives these messages, you feel pain. This includes pain caused by cancer.

Cancer pain is a broad term for the different kinds of pain people may experience when they have cancer. Even people with the same type of cancer can have different experiences. The way you feel pain will be affected by:

  • the type of cancer
  • its stage
  • the treatment you receive
  • other health issues
  • your attitudes and beliefs about pain
  • the significance of the pain to you.

Does everyone have cancer pain?

Not everyone with cancer will have pain and those who do experience pain may not be in pain all the time. In recent years, the number of people with cancer who say they experience pain has decreased.

During cancer treatment, almost half of people (45%) say they experience some degree of pain. Almost a third say they experience moderate to severe pain. People with advanced cancer are more likely to have pain

More about advanced cancer

Causes

Some people with cancer have pain caused by the cancer itself, by the cancer treatment, or by other health issues not related to cancer, such as arthritis. Pain can be experienced at any stage of the disease.

  • Before diagnosis – cancer can cause pain before a diagnosis and the pain may come and go. In some cases, pain comes from the tumour itself, such as abdominal pain from the tumour pressing on bones, nerves or organs in the body.
  • Diagnosis – tests to diagnose cancer can sometimes cause short-term pain or feel uncomfortable (e.g. you may need surgery to remove a sample of tissue for examination). Most pain caused by tests can be relieved.
  • During treatment –  some treatments cause pain, for example radiation therapy may lead to skin redness and irritation.
  • After treatment – pain may continue for months or years. Causes include scars after surgery, numbness in the hands or feet, lymphoedema, and pain in a missing limb or breast.
  • Advanced cancer – if the cancer has spread, it can cause pain by a tumour pressing on a part of the body such as a nerve, bone or organ.

“During the treatment, I had pins and needles in my hands and in my feet. Walking just got to be almost impossible because I couldn’t quite walk properly at all.” Phil

Types

 There are many types of pain. Pain can be described or categorised depending on how long it lasts or what parts of the body are affected. 

Types of pain

Acute pain – pain that starts suddenly and lasts a short time, possibly for a few days or weeks. It may be mild or severe. Acute pain usually occurs because the body is hurt or injured in some way, but it generally disappears when the body has healed.

Chronic pain – pain that lasts longer than three months. It may be due to an ongoing problem but can also develop after any tissue or nerve damage has healed. It is also called persistent pain.

Breakthrough pain – a sudden flare-up of pain that can occur despite taking regular pain medicine. It may happen because the dose of medicine is not high enough or because the pain changes when you move around. Other causes include stress, anxiety or other illnesses.

Nerve (neuropathic) pain – pain caused by pressure on nerves or the spinal cord, or by nerve damage. People often describe nerve pain as numbness, burning or tingling, or 'pins and needles'. Nerve pain can occur anywhere nerves get damaged, and the pain may come and go.

Bone pain – pain caused by cancer spreading to the bones and damaging bone tissue in one or more areas. It is often described as dull, aching or throbbing, and it may be worse at night.

Soft tissue pain – pain caused by damage to or pressure on soft tissue, including muscle. The pain is often described as sharp, aching or throbbing.

Visceral pain – pain caused by damage to or pressure on internal organs. Visceral pain can be difficult to pinpoint. It may cause some people to feel sick in the stomach and is often described as having a throbbing sensation.

Referred pain – pain that is felt in a different area of the body from the area that is damaged.

Localised pain – pain at the spot where there’s a problem.

Phantom pain – a pain sensation 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. 

 

What affects pain?

As well as the physical cause of the pain, your environment, fatigue levels, emotions and thoughts can affect how you feel and react to pain.

It’s important for your health care team to understand the way these factors affect you.

  • Where you are – things and people in your environment can have a positive or negative impact on your experience of pain.
  • How tired you feel – extreme tiredness (fatigue) can make it harder for you to manage pain. Lack of sleep can increase your pain. Ask your health care team for help if you are not sleeping well.
  • How you feel – you may worry or feel easily discouraged when in pain. Some people feel hopeless, helpless, embarrassed, angry, inadequate, irritable, anxious, frightened or frantic. You may notice your mood changes. Some people become more withdrawn and isolated.
  • What you're thinking – how you think about pain can affect how you experience the pain, for example whether you believe it is overwhelming or manageable.

Speak to a cancer nurse

Managing pain

The way cancer pain is managed depends on the cause, but relief is still possible even if the cause is unknown. Often a combination of methods is used, including: 

It might take time to find the right pain relief for you, and you may need to continue taking pain medicines while waiting for some treatments to take effect. Different pain relief methods might work at different times, so you may need to try a variety.

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

If you have a new pain, a sudden increase in pain or pain that doesn’t improve after taking medicines, let your doctor or nurse know. Like a cancer diagnosis, pain that is not well controlled can make you feel anxious or depressed.

When can I use pain medicines?

The aim is for pain to be continuously controlled. You should take your pain medicine as prescribed, even if that means taking medicine even when you don’t feel pain.

If pain lasts longer than a few days without much relief, or you are in more pain than usual, see your doctor. It’s better to get relief early rather than allowing it to get worse. This makes it easier to control and means you are likely to have less pain overall.

Your doctor will talk to you about how much medicine to take (the dose) and how often to take it (the frequency).

Many people believe they should put up with pain for as long as possible and only use pain medicines when it becomes unbearable. If you do this, it can mean that you are in pain when you don’t need to be.

There is no need to save pain medicines until your pain is severe. Severe pain can cause anxiety and difficulty sleeping. These things can make the pain feel worse and harder to control.

If you think your pain medicine isn’t working or the pain returns before the next dose, it’s important to let your doctor know. They may need to adjust the dose, prescribe a different medicine or give an extra dose of medicine. Don't change the dose yourself. 

Who helps manage my pain?

Different health professionals help manage pain. They will often discuss ways to manage pain at a multidisciplinary team (MDT) meeting.

If your pain is not well controlled, ask your GP or palliative care specialist for a referral to a pain medicine specialist who is part of a multidisciplinary pain team. 

Health professionals you may see include a surgeon, medical oncologist, pharmacist, social worker and nurse practitioner, among others.

Question checklist

Asking your doctor questions about your pain and its treatment will help you make an informed choice. You may want to include some of these questions in your own list.

Diagnosis

  • What is causing my pain?
  • Is the pain likely to get better or worse?

Treatment

  • What treatments do you recommend? What is the aim of each treatment?
  • How long will the treatments take to work?
  • How often should I take my medicine?
  • Should I take extra doses if I still get pain?
  • Are there other options if the medicine doesn’t work?
  • Can you tell me about non-medicine treatments?
  • Are there any complementary therapies that might help?

Side effects

  • What are the risks and possible side effects of each treatment?
  • How can the side effects be managed?
  • Will the different medicines I’m taking interfere with each other?
  • Will I be able to drive when I’m taking this medicine?
  • Are there any precautions I need to take, such as not drinking alcohol?
  • Will I get addicted to my pain medicine?

Practical concerns

  • Who will manage my prescriptions?
  • How much will my medicine cost? Can I reduce the cost of it?
  • Will I keep seeing you about my pain relief, or will I see my GP or palliative care team?
  • Who can I contact in an emergency?
  • Who can I contact if I have questions when I am at home?
  • How can I record my pain levels and any breakthrough pain?

 

Describing pain

Only you can describe your pain. How it feels and how it affects what you can do will help your health care team plan the most appropriate way to treat the pain. This is called a pain assessment.

You may have regular pain assessments to see how well medicines and other ways of controlling pain are working, and to manage new or changed pain.

Ways to help manage pain

  • Make a note of triggers – write down what seems to cause or increase your pain. This is called a trigger, and it may be a specific activity or situation. Knowing what triggers your pain might help you find ways to manage these triggers.
  • Keep a pain diary – a written record of your pain can help you and those caring for you understand more about your pain and how it can be managed. Note down how the pain feels at different times of the day, what you have tried for relief and how it has worked.
  • Keep a contact list – make a list of the health professionals in your team and their contact details. Keep this handy in case you or your carer need to get in touch. 
  • Know when to seek help – talk to your doctors about what should prompt you to call them and who you can call, particularly after hours. For example, you may be instructed to call if you are feeling very sick or sleepy.

Using a pain scale

You can use different scales to describe your pain and how it is affecting you. These can help your health care team find the best pain control methods for you.

There are different kinds of scales, including:

  • word scale – rates the pain from none or mild through to moderate or severe
  • number scale – rates the pain from 1–10, where the higher the number, the worse the pain
  • activity tolerance scale – rates how much the pain affects what you can do, for example thinking, walking, carrying things 
  • facial scale – uses facial expressions to show how the pain makes you feel.

Questions your doctor may ask you

  • Where in your body do you feel pain or discomfort?
  • How would you describe the pain?
  • How does it compare to pain you have felt in the past?
  • What does it feel like? For example, is it dull, throbbing, aching, shooting, stabbing or burning? Are there any pins and needles or tingling? Are there areas where it feels numb?
  • Does your pain spread from one area to another (radiate)?
  • When did the pain or discomfort begin?
  • How often are you in pain? How long does the pain last each time it occurs? (Try timing the pain). What makes the pain better or worse?
  • Do you have any flare-ups of pain?
  • Which activities does it prevent you from doing (e.g. getting up, dressing, concentrating, bending down, walking, sitting for long periods, exercising, carrying things, driving, sleeping, having sex)?
  • What activities would you like to do if the pain improves?
  • How does the pain make you feel emotionally?
  • What pain relief methods have you tried? What helped or didn’t help?
  • Did you have any side effects from pain medicines?
  • What have you done in the past to relieve pain? How did this work?
  • What does the pain mean to you?

Understanding Cancer Pain

Download our Understanding Cancer Pain booklet to learn more

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