Managing Pain when Cancer Is Advanced

Managing Pain when Cancer Is Advanced

Julie: You’re listening to “Managing Pain when Cancer Is Advanced”, an episode of “The Thing About Advanced Cancer”.

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Prof Melanie Lovell: Pain management is a real collaboration and negotiation between you and your health professional. So, ideally you will sit down with your health professional and talk through the pain relievers. Ask any questions or concerns you may have and talk with them about actually what will work for you. Because having trust in your health care team makes a huge difference to the pain experience.

[Series Intro]
[woman] The Thing About Advanced Cancer
[man] a podcast from Cancer Council NSW
[woman] information and insights
[man] for challenging times.

Julie: Hello, I’m Julie McCrossin. And today, the thing about advanced cancer is that some people do experience pain, but is pain inevitable as cancer progresses? And if you have pain, how can it be controlled? We’re talking with Dr. Melanie Lovell, a palliative medicine physician at HammondCare, who’s an expert in managing pain.

Just to be clear, this podcast contains general information only, so we recommend you talk to appropriate health professionals about your individual situation. You can also call Cancer Council 13 11 20 if you have any questions.

In this episode, we want to focus on pain when cancer has advanced. I should say that in our other podcast series, “The Thing About Cancer”, we talked about managing pain for people with a diagnosis of cancer that is not advanced. If you want to hear that episode, go to managing cancer pain at cancercouncil.com.au/podcasts.

And now it’s my pleasure to welcome Melanie Lovell to Cancer Council’s podcast. Melanie, the big fear that people have when they hear the expression “advanced cancer” is pain. And I suppose the most important question of this whole discussion is, is it always the case that you’ll experience pain?

Melanie: You’re right, it is a common fear that people have and even the fear of pain can increase the pain. Not everybody has pain. And the people who have pain don’t have it all the time. So, you may have pain related to surgery or to therapy or to a new spot of disease. But treating that disease will reduce the pain.

Julie: Melanie, why does pain management matter? Why is it important?

Melanie: Because getting it right makes such a difference. It really transforms people’s lives and allows them to do so much more. We know if we can get it right, then people can live really well even though they’re dealing with cancer.

Julie: So, Melanie, can you describe how advanced cancer pain may differ from the pain that you might get with an earlier stage of cancer?

Melanie: They can be similar in that they can both be related to a spot of cancer and they can both respond to treatment. They can also be different in that people who have ongoing cancer, despite treatment, may have ongoing pain.

Julie: So, does it necessarily, does the pain necessarily get worse if your cancer is progressing?

Melanie: It can, but it doesn’t necessarily. And we can see people who’ve got widespread disease who have zero pain. If there is pain, then it should be investigated. So it is important to go to your doctor if you have a new onset of pain, to work out what the problem is, then it can be treated, either by treating the cancer or by treating the pain.

Julie: I know someone’s listening to this who’s been told they’ve got advanced cancer, and they just want to know, can I avoid pain altogether?

Melanie: I think for an individual, we don’t know the answer to that. There are lots of things that you can do to reduce your risk of pain and to manage pain if it happens. But I think to say that we can do something to avoid pain altogether would be misleading.

Julie: I’ve been told that you can describe the pain associated with advanced cancer in different ways. So, bone and nerve pain, localised pain, referred pain, breakthrough pain. Can you help us understand what are these different types of pain associated with advanced cancer and why is it important to give them different labels when we’re discussing it?

Melanie: The first way we think about it is acute and chronic pain. Acute is a new pain. Chronic pain has been there for some time. And then the other descriptions of pain are important because it helps us work out how best to treat them. So, nerve pain, for instance, people might experience as a shooting pain. It might be associated with numbness, tingling, some changes in sensation in the skin. So, it may be more sensitive or it may be numb. And both those things can be an effect of nerve pain.

Julie: And what does bone pain feel like?

Melanie: Bone pain can feel annoying. It’s often worse at night.

Julie: Is it more like an ache?

Melanie: Yes, it can be more like an ache.

Julie: And how are nerve and bone pain managed?

Melanie: A nerve pain, for instance, will have a whole range of different treatments from a bone pain. And nerve pain may require medications whose primary use is for something else, like antidepressants or anticonvulsants, but actually have a really effective role in nerve pain. Bone pain – it can be very effectively treated with a single fraction of radiotherapy.

Julie: And what does localised pain mean?

Melanie: It means just in in a very specific area. So again, bone pain is a good example of that – that may be very localised. Or a fracture, which might be very localised at the site of the fracture.

Julie: Sometimes you hear people use the term “breakthrough pain”. What does that mean?

Melanie: That means pain that happens on top of the background level of pain. So, it may be that that background pain is really well controlled with regular pain relief, but there’s extra pain that happens with activity or some other trigger which breaks through that background level of pain.

Julie: So, what do you do? If you’re a patient, you might have ongoing pain management, but be given some extra medication to use if you’re doing certain activities?

Melanie: Exactly. So you may have, for instance, a patch or a medication that you take just twice a day. But if there’s something else, if you can predict that pain’s going to come on with an activity, you can take the short-acting pain relief beforehand, and that will help keep that under control so you can enjoy that activity that you’re going to do.

Julie: Just before we move on, there was one other pain we referred to earlier, which is referred pain. What does that mean? And can you give me an example of how you would manage that with advanced cancer?

Melanie: So, referred pain is pain that is felt at a different location from where the actual problem is. So, for instance, liver pain may be felt in the shoulder tip because both the liver and the shoulder hip have the same nerve supply. So, the focus is on managing the liver pain, and the shoulder tip pain will go away.

Julie: What are the factors that can influence how an individual person experiences pain with advanced cancer?

Melanie: One in five Australians have pain. So, people will have had experience not only of their own pain and pain management, but family pain and pain management. So we bring a whole lot of experience and response into that.

Julie: So, if you’re the doctor in a conversation with a patient with advanced cancer, you’re wanting to know about their total wellbeing, emotional, physical – people even talk about the spiritual and the mental.

Melanie: Yes, absolutely right. In a palliative care assessment, we will look at all those things because we know how closely they relate with each other. So, someone’s psychological situation, if people are anxious or depressed, that can actually increase the pain experience. And obviously any diagnosis of cancer carries with it a threat to our being, a threat to our existence and our spirituality – the way we approach that, the way we seek meaning and purpose and peace, can really impact our pain experience.

Julie: Can I ask you this? Do you treat pain differently depending on the person’s priorities, what they say matters to them?

Melanie: Oh, we absolutely do. We find this really often, that we talk about the pain, we talk about the causes, the cancer journey and so on, and then we’ll say, well, what’s really most important to you? And someone will say something completely unrelated. You know, what’s most important is that they’re able to pick up the kids from school in the afternoon. And so all those things really do impact the pain, because once the anxiety and distress related to that particular issue is alleviated, the pain often reduces.

Julie: So, I’ve been told there’s evidence from research that indicates that if people have some sense of reflective meaning on their life, they actually manage the trials and tribulations of advanced cancer better. Is that right?

Melanie: That is absolutely true. So less experience of depression related to the cancer, better pain outcomes. Yes, it is true.

Julie: You mentioned earlier that symptoms can relate to each other. I believe doctors call that “symptom cluster”. Could you explain what symptom cluster means and how it relates to pain?

Melanie: What that means is a number of symptoms that happen at the same time, and they’re often related, either by the mechanism or by the background cause. So, for instance, we know that anxiety might cluster with breathlessness. So, someone who’s breathless might be more likely to be anxious. We know that pain is closely related to constipation, believe it or not, and that that may well relate to the medications that are used for the pain. So, associated symptoms will make a huge difference to the person’s pain experience.

Julie: Okay, so let’s say my cluster of mental, physical, psychological and spiritual symptoms have all been taken into account. Now I want to know what medications can help as the cancer advances. So, tell us what you can do and to what degree you can alleviate or even eliminate pain.

Melanie: There’s lots and lots of pain relievers. So, for mild pain, there are things like non-steroidals and paracetamol. For more moderate to severe pain, there are the group of medicines known as opioids, the things like morphine, endone, hydromorphone and so on. And there’s lots of good evidence for opioids in advanced cancer. One point I would make is that now that the cancer treatments have changed so much in recent times and people are often living very long periods of time with advanced disease, the role of opioids for these long durations is less well understood. And it’s an area of research – as the disease trajectory is changing, we’re needing to look into it more and whether opioids have as much benefit in that setting.

Julie: Let’s just go to the side effects of opioids. Is there a trade-off between managing the pain and then coping with the side effects?

Melanie: Yes, there’s an ideally, what we aim for, is someone who’s on pain relievers but without side effects. And each person will get the balance for themselves. So, for instance, a young mother I’ve been looking after, she prefers to have some pain, but be very alert so that she can be engaging and involved with her young children. Other people might find that they’re prepared to put up with some drowsiness and to have zero pain.

Julie: Look, I know from personal experience that constipation can be very troublesome. Is that an issue for people taking opioids?

Melanie: That is a side effect with most opioids – so pretty much everyone who is on a strong opioid will require one or two laxatives as well.

Julie: Can you reassure people that they won’t be left suffering bad pain?

Melanie: Yes, I can. So, a very small percentage of people will have severe pain. Not only is there the strong opioids, there’s a whole range of other medications that we can use and other procedures such as nerve blocks for people who continue to have pain.

Julie: What’s a nerve block?

Melanie: A nerve block is where there’s an injection of either an anaesthetic agent or an agent to destroy the nerves. And for instance, people who have pancreatic cancer who get a lot of abdominal pain, there’s good evidence that, celiac plexus block is the term for it, can reduce pain and reduce the requirements for pain relievers.

Julie: You mentioned earlier, bone pain. What are you able to do for that sort of deeper bone pain in that more advanced stage?

Melanie: Yes, so bone pain can be very responsive to opioids. There’s two types of agents that we can use to prevent ongoing bone pain and episodes related to bone disease, which are effective: radiotherapy, as I mentioned, and then procedures should they be required –

Julie: – meaning surgical procedures?

Melanie: – surgical procedures or nerve blocks and that type of thing.

Julie: Okay. So, you’ve got a lot in your kit bag. And just to explain what radiotherapy or radiation therapy means, we often associate it with curing cancer, but it can be used to help people with pain?

Melanie: Yes. So, a treatment course to cure cancer will often be several weeks in length with the treatment every day. A treatment directed at pain can be a single fraction at the affected bone and can be very effective indeed.

Julie: And fraction. It just means a dose, the size of the dose?

Melanie: Yes, just one treatment. Often only lasts about five minutes.

Julie: And why does radiation therapy help pain?

Melanie: Because it works on the cancer, so it will reduce the cancer at that site. Radiation – unlike chemotherapy, which treats the whole body – radiation is directed at the specific place where the beams are directed, and it will help the cancer in that location.

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Julie: Many people use opioids to control pain, and that has certainly been the case for Susan’s partner, Peter, during his treatment.

Susan: Pain has been his most difficult symptom. That’s the one that’s the hardest to just to deal with, to live with, to try to not rely too much on pain medication all the time. He tried endone and targin and all different, oxynormal and all the prescribed opioids, and none of those would really touch his pain at all. Then finally we found out about fentanyl patches and the oncologist prescribed them and they have worked.

Julie: Melanie, we’ve just heard Susan say that her husband tried not to rely too much on pain relievers. Are there complementary therapies that can help people with advanced cancer?

Melanie: Absolutely, yes. And a whole range of them. And we’re getting increasing evidence for them over time. So, the ones that are very well established are things like meditation, hypnosis, imagery, music therapy. We’ve got really good evidence for music therapy.

Julie: Is massage up there with evidence?

Melanie: Yes, there is evidence for massage. One of the ones that we’re interested in at the moment is virtual reality. Now, distraction works very effectively, and this is a more specific type of distraction where people can really be taken away from their pain experience.

Julie: Let’s go to how we think about pain. Is there a role for psychology here? I’ve heard that psychologists can teach people a strategy called cognitive behaviour therapy. What is that? And can it help with pain and advanced cancer?

Melanie: The answer is yes. And there’s high level evidence for that. Cognitive behaviour therapy, it addresses how we think about pain. So often when there’s pain, people get very frightened. And it’s about using strategies of saying, okay, this pain will pass, this pain can be managed. I understand what’s happening now, I’m having a pain because I’ve been up and moving. I’m going to give this pain relief. So it’s getting rid of unhelpful thoughts that increase our fear and replacing them with realistic, helpful thoughts.

Julie: Okay. Give me an example of a realistic, helpful thought.

Melanie: Yeah. So, this is where understanding what’s causing the pain and how the treatment works is so important. We know that when people are afraid, the pain experiences increases, so people may have a new pain. And so the way to think about it is, okay, we need to understand what’s causing the pain. I know that this pain can be managed. Let’s talk to the doctor about what I’m experiencing and let’s start on some pain relief.

Julie: Who are the people who help you if you’ve got bad pain with advanced cancer?

Melanie: Yes. So, there’s a palliative care team and then there’s all the other teams within the palliative care team, there’s the doctor, the nurse – and the nurse is often the main port of call just for any concerns or queries or even being able to visit at home. There’s the pastoral care team. There’s physiotherapists – and physiotherapists have a crucial role in pain management, we know that exercise makes a big difference. Also, we’ve got an occupational therapist and they can help with aids to support, for instance, you know – cushions, if people are having pain because of weight loss or, you know, sores on their bottom or bone pain in their bottom. Otherwise, social workers can provide counselling skills, listening skills, and psychologists have an important role.

Julie: So, there’s a team to help with the many aspects, which brings us to communication, because it would seem that to manage pain effectively, there needs to be ongoing communication between the patient and the team. How can people communicate with their doctor about pain and be really effective?

Melanie: One of the things that we often recommend is a pain diary, and that will actually record very clearly, you know, what are the triggers of pain? How do you respond to that extra pain relief? You know, what is that background pain level? And that’s a really great communication tool so that you can be really clear with your health professional how things are going where the pain management is concerned.

Julie: A concern people often have is, I want more (pain relief) and they won’t give me more. What would you say to that?

Melanie: That is such a good question. And that’s something that we talk about a lot, that only the person knows how much pain they’re experiencing. And so while we have to have an ongoing process of assessment and making sure that pain relievers, that is what’s going to be most effective for that person at that time. No, there’s – if people require pain relief, they get it.

Julie: Could we come to the person who’s been living with advanced cancer but they’re now right at the end of life. Do people die in a fuzz of medication? Are they in pain at the end?

Melanie: The more common is people who will become less and less conscious but not related to medication, just the disease process. So often people’s medication stays very stable in the last days or weeks of life, but they themselves become less conscious because of the disease process. But it’s very rare for someone to die in pain.

Julie: Okay, so having advanced cancer, like all cancer experiences, is about learning new things and what we need to tell you to work as a team to make life liveable.

Melanie: Well, exactly. And pain management is a real collaboration and negotiation between you and your health professional. So ideally, you will sit down with your health professional and talk through the pain relievers. Ask any questions or concerns you may have and talk with them about actually what will work for you, because for some people, it actually just won’t work to have to take pain relievers four times a day because they aren’t at home or they won’t remember or whatever it is.

Julie: Look, just before we finish – if you could imagine someone who’s just been told that someone they love has got advanced cancer, what are some practical ways they can help?

Melanie: So, make sure that you care for yourself as well. I’d say this is the top one, because people often really, you know, spend so much of their time and energy that they’ll run out. Listen well and believe your loved ones, if they’re saying they’re in pain, they’re in pain.

Julie: And how can they help the person they’re caring for? What are the main things the carer can do for pain?

Melanie: Massage would be one practical thing that they could do, and also know when to call. You know, if someone hasn’t had their bowels open for three days, if they’re needing lots of breakthrough pain relief and still not getting relief. You know, these are indications that it’s actually good to get onto the health professional team.

Julie: These are great practical suggestions. Is there anything else a carer can do?

Melanie: It’s funny because it’s not necessarily an active thing to do. It’s, it’s a presence. It’s a listening. It’s a support that people seem to find most helpful.

Julie: Imagine you’re talking to someone who’s just been diagnosed with advanced cancer. What are your top tips for them? About coming to terms with this diagnosis and managing the experience?

Melanie: So, I think it’s important to think about what is most important for them. So, that would be my first thing, what’s important in life for you. The second one would be to trust your health professional. Having trust in your health care team makes a huge difference to the pain experience.

Julie: So, trust your people and think about what’s really important to you and keep talking to them about you, because your priorities presumably could change as you go along.

Melanie: Exactly. That’s exactly right, Julie.

Julie: That’s it for this episode of “The Thing About Advanced Cancer”. Thanks to Melanie and Susan for sharing their insights. And we’d also like to thank the Dry July Foundation for their generous support of this advanced cancer podcast series.

If you’re looking for more information, you can ring the Cancer Council 13 11 20 information and support service from anywhere in Australia or go to cancercouncil.com.au/podcasts. If you have any feedback on this podcast, we’d love to hear from you. So, leave us a review on Apple podcasts or on our website. If you’d like to subscribe for more free episodes, you can do it in Apple Podcasts or your favourite podcasting app.

If you found this episode helpful, you might want to listen to our podcast on managing breathlessness when cancer is advanced. In that episode, I talked to Jane Phillips, a professor of palliative nursing, about ways to cope with shortness of breath.

Jane Phillips: I think the important thing is that we may not be able to stop the breathlessness, but what we need to do is make it manageable. And it’s really about getting the intervention in place much earlier so that you have some control and you feel confident about using those strategies, and you have a belief within that you can actually manage your breathlessness.

Julie: You can find that episode, “Managing Breathlessness When Cancer is Advanced”, on our website at cancercouncil.com.au/podcasts, and just click through to “The Thing about Advanced Cancer”.

The stories and experiences contained in this podcast represent the views and opinions of the speakers. They do not necessarily represent the views and opinions of Cancer Council NSW. This podcast contains general information only, and Cancer Council NSW recommends you obtain independent advice specific to your circumstances from appropriate professionals. I’m Julie McCrossin and you’ve been listening to “The Thing about Advanced Cancer”, a podcast from Cancer Council NSW.

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