Speak up about your cancer pain. Help us help you!

The facts – Cancer pain

Pain is different for everyone. Cancer pain is experienced differently by each of you.

It is estimated that up to a staggering 80% of cancer patients will, at some point, experience cancer related pain and up to 44% of cancer patients will report experiencing moderate to severe pain 1,2.

Too often cancer pain is undertreated. This can occur when patients are scared or reluctant to report their pain to their doctor or reluctance of doctors to ask about pain and spend time on offering treatments. Patients often report a fear of addiction or side effects as a major factor that stops them from reporting pain.

Causes of Pain

Cancer related pain can be experienced due to direct tumour involvement, from cancer treatment (radiotherapy, chemotherapy or surgery) or even from general problems such as bed sores or constipation.

Physical factors that may influence our experience of pain include; age, gender and any pre-existing illnesses you may already have e.g. arthritis or a previous back injury.

Non-physical factors that can increase our perception or experience of pain include; pain threshold (tolerance for pain), lack of sleep, anxiety, depression, social, cultural and spiritual factors.

Acute or Chronic Pain?

People with cancer pain often report their pain changing throughout the day. The type of pain you experience will determine the type of treatment you need, to best help relieve it. The amount of pain and location of the pain will depend on the type of cancer you have and what stage your cancer is at.

Acute pain is reported as being severe and lasts for a short period of time. It is usually a sign that the body has experienced an injury such as surgery. As the body begins to heal from the injury the pain will generally go away.

Chronic pain (also known as persistent pain) lasts for longer periods of time (longer than 3 months). It can impact on your quality of life if not managed well. It can make it hard for you to sleep, do the shopping, eat or spend time with your family and friends.

Breakthrough pain is best described as a flare up of your chronic pain, even though you are taking pain relief medication. This pain can feel like your chronic pain but it comes on very quickly and feels more severe than your chronic pain.

Sometimes breakthrough pain can be predicted, for example when you have a shower or bend down to pick something up, these movements can cause breakthrough pain. But a lot of the time breakthrough pain is unpredictable and can come on unexpectedly without any warning.

Regardless of whether your pain is acute or chronic every person responds differently to pain medication. What works well for you may not work so well for someone else. For example Paracetamol may help one individual with bone pain but for someone else Morphine may be the only medication that helps with their bone pain. Progressing on a different pain medication doesn’t necessarily mean the pain is getting worse. It often takes a combination of medications to get the right pain management regime and plan.

Types of Pain

  • Nerve Pain (neuropathic pain)
    Damage to nerves or pressure on your spinal cord or nerves can lead to nerve pain. Nerve pain is often described as a tingling sensation, pins and needles, numbness, sensation of hot or cold, stabbing, shooting or a crawling sensation (like bugs walking all over you). This type of pain can be experienced after surgery (e.g. along the surgical incision line from lung surgery). It can also be experienced after radiotherapy or chemotherapy (peripheral neuropathy).
  • Bone Pain
    Research has shown that bone metastases (cancer spreading to the bone) is the most common cause for chronic pain in cancer patients. Bone pain is caused when the cancer damages bone tissue. It is often described as dull, aching or throbbing.
  • Phantom Pain
    Phantom pain can occur when part of the body is removed. For example, you may have cancer in your breast or your leg and this body part is removed during surgery. This type of pain is very real and can sometimes be described as unbearable. However, it can be controlled with the right pain medication.
  • Soft Tissue Pain
    This pain occurs when there is damage or pressure on a body organ or muscle. For example, lower back pain may be caused by pressure being placed on your kidney. It can be difficult to pinpoint exactly where the pain is. People usually describe soft tissue pain as sharp, throbbing, cramping or aching.
  • Referred Pain
    Referred pain occurs when you feel pain elsewhere that is not at the site of the problem. For example, if you have a swollen or enlarged liver this can press on nerves that end up in your right shoulder. So the pain you feel will not be where the liver is but up in your right shoulder.

Why is it so important to speak up?

Suffering in silence is not the answer! Be open and honest with your family, friends and health professionals. They are there to help you.

Suffering from increased and high pain levels can impact your body and life in many different ways. Increased pain can cause high blood pressure and feelings of anxiety and depression, to decreasing your mood and affecting your sleep. Having better and well-managed pain levels can improve your quality of life.

What to tell your doctor or nurse

As your health care professional, we look and listen for certain factors that may help guide us with your pain management. Some of these include;

  • Does anything bring on your pain? e.g. movement, bending over, laying to one side.
  • Does anything make your pain better? e.g. medication, rest, deep breathing.
  • Does anything make your pain worse? e.g. sitting up, heat, laying down.
  • You can help your specialist by describing your pain e.g. sharp, burning like, crushing, dull. This can help us understand the cause of the pain you are feeling.
  • Being able to point to where the pain is or let us know if it travels anywhere else in the body can also be very helpful.
  • When did the pain start? Did the pain come on suddenly or has it slowly been becoming more severe over days to weeks.
  • Does the pain become better suddenly or more gradually?
  • How does the pain impact your life? e.g. Does it stop you from getting a good night’s sleep or decrease your appetite?
  • Have you experienced pain like this previously? If so, did anything help relieve it?

One of the things health care professionals are guilty of is asking our patients to rate their pain on a scale of zero to ten! We do this because pain is very subjective. My experience of severe pain may only be moderate pain felt by someone else. Being able to give your pain a number from 0-10 helps us understand what the intensity of pain is for YOU.

It helps to keep track of your pain. Using the My Cancer Pal Pain Tracker is a hassle free and simple way to do this. It makes remembering your pain levels over the last 24 hours or week much easier. Being able to show your health professional how your pain levels have been helps guide them to increase or decrease any pain medications.

Image: Pain Scale www.disable-world.com

Generally speaking, we say ten is the worst pain you have ever felt and zero is nothing. If your pain score becomes higher than a three out of ten, then this is the best time to intervene. Whether that be with medication, relaxation, deep breathing or heat/cold packs. If your pain score continues to rise and no interventions have been put in place, than you run the risk of:

A) Needing more pain relief medications to help bring your pain score back down lower.
B) Taking longer to get your pain under control.

Holding out and being stoic is not that answer. If you have pain and it becomes more intense and severe, then the time to act is NOW!

It does not necessarily mean you are becoming worse or that your cancer is progressing. It may be as simple as; you are in pain and need assistance to help control it.

Questions you may want to ask your doctor or nurse

  • How much medication should I take (what is the dose)?
  • How often do I take it? (e.g. as required, strictly every 6 hours or at night only)
  • How do I take it? (e.g. tablet, syrup, injection)
  • If I only take it as required, how often can I take it?
  • Do I need to take it with or without food?
  • How long should it take to start working?
  • If my pain does not improve, can I take more? If so, how much?
  • Does my pain medication interact with any of my other medications?
  • Can I take any other pain medications with this?
  • Is it safe for me to drive or drink alcohol whilst taking this medication?
  • Are there any possible side effects from this medication? What do I do if I have them?
  • If I run out of this medication, is it safe to stop it suddenly or do I need to wean off the medication?

It is always helpful to have an up-to-date medication list with you.  It is important to understand when, how much and why you are taking these medications. My Cancer Pal has a dedicated Medication Manager tool that can help make this simple and easy for you.

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