Living Well with Advanced Cancer

Living Well with Advanced Cancer

[EPISODE ID]: You’re listening to “Living Well with Advanced Cancer”, an episode of “The Thing About Advanced Cancer”.

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Judith Lacey: How do you deal with the uncertainty? How do you live with the uncertainty of having an incurable cancer but it’s responding at the moment to treatment? And we ask patients and they give us the answer, “Well, I want to live the most normal life as possible. I want to live day to day, enjoy my family, find what gives me meaning in life, and then stay as well as possible every day.”

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

INTRO: Hello, I’m Julie McCrossin. And the thing about advanced cancer is that some people can live for years after the diagnosis, so how do you keep yourself as physically and emotionally well as you can and maximise your quality of life? We’re talking to Associate Professor Judith Lacey who is Head of Supportive Care and Integrative Oncology at Chris O’Brien Lifehouse in Sydney and she’s also a palliative care specialist. Judith uses both conventional medicine and complementary therapies to improve the overall wellbeing of patients.

Just to be clear, this podcast contains general information only, so we recommend that you talk to appropriate professionals about your individual situation.

You can also call Cancer Council 13 11 20 if you have any questions.

Welcome to Cancer Council’s podcast, Judith.

Judith: Thank you, it’s really lovely to be here.

Julie: So, to begin, I have the impression that cancer treatments are improving all the time, some people with advanced cancer are surviving for longer, and even our understanding of what advanced cancer actually means is changing.

Judith: That’s absolutely right. Advanced cancer used to mean that you’ve got a very poor prognosis and that’s changing significantly. So, people are living with advanced cancer.

Julie: And you’re described as a supportive care and integrative oncology specialist, but you’re also a palliative care specialist. So, imagine that I’m a person who’s just been diagnosed with advanced cancer – could you explain how you might be able to help me?

Judith: Well, I would say that my job is to keep you living well with your cancer from the time of diagnosis throughout your time with cancer. It may mean that your cancer progresses, and end-of-life care is included in that care. But it also may include helping keep you living well as for as long as possible for however long that is, and into survivorship.

Julie: So, could you just explain what supportive care is, and how it relates to palliative care?

Judith: Supportive care is the umbrella term for all supportive therapies that keep people living well with cancer. So, if you imagine an umbrella where above the umbrella are all the treatments that you receive for cancer, whether it’s surgery, chemotherapy, radiotherapy, immunotherapy, targeted treatments, to control the cancer. Supportive care is looking at the whole person and looking at how we can keep you living well with your cancer, reduce the burden of symptoms related to the cancer itself, the cancer treatment and how we keep you living longer with that cancer and living well. And that includes survivorship, but it also includes people who have got advanced progressive disease and incurable disease. And that’s where palliative care fits in. Palliative care is the meticulous care of people’s physical, emotional, spiritual wellbeing to keep them living well with an incurable cancer.

Julie: But just to clear up the meaning of palliative care. Some people associate it with the idea that they’re about to die. What would you say to a patient who’s concerned about the word palliative because they’re fearful it means they’re going to die soon?

Judith: First of all, that’s not the reason that people are referred to palliative care. You really need to see the best professionals for your symptoms, and people have very complex symptoms related to their treatments and related to their disease that could benefit from a holistic multidisciplinary approach, and that’s where palliative care really fits in.

Julie: So, is it possible that you could still be receiving some active treatment for your cancer and having support from a palliative care team for symptom and pain management?

Judith: Absolutely. Not all palliative care services are resourced to do that, but increasingly most are.

Julie: Annabelle referred herself to a local palliative care service after her treatment for advanced melanoma.

Annabelle: They’ve been fantastic because they’ve actually helped me develop an advanced healthcare plan. I see a community nurse who can come and check on pain or you know just general wellbeing, appetite, food what you’re eating, blood pressure, things like that. And there’s a doctor if you are in a serious state who they will provide. I’ve seen a social worker through them. They have volunteers who will come and sit with – you know, come and have a cup of tea, they will drive you places. I don’t need people to drive me and do my shopping for me yet, I’m okay, I’m quite independent really. But to have somebody to chat to and share lives with… Yeah, I find it a real emotional support.

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Julie: Judith, you’ve explained that supportive care and palliative care both look at the whole person and they can include therapies that are in addition to your cancer treatment, what we call complementary therapies. What are some examples of supportive and complementary therapies that people might find helpful?

Judith: So, examples of supportive therapies and complementary therapies are things like: massage and touch therapies to improve maybe your pain or your fatigue, your anxiety, your distress, your sleep disturbance; acupuncture using traditional Chinese medicine to improve symptoms that are difficult, like fatigue or nausea, peripheral neuropathy – so those tingling feet and numbness of your feet – acupuncture can be beneficial. Early intervention of symptoms improves your wellbeing from the time of diagnosis on, and getting into a habit of improving your symptoms and being proactive and empowering people to stay well is the essence of integrative oncology.

Julie: And those complementary approaches, are they ever about cure?

Judith: They’re not about cure. Traditionally, complementary therapy was known as CAM or complementary and alternative medicine. We’ve taken out the ‘A’. This is not alternative medicine. This is about complementary, integrative therapies, or CIM it’s called now, and it’s looking at therapies that go alongside of your traditional therapies –using mind-body therapies, some lifestyle changes, dietary changes, nutrition and selected evidence-informed therapies that improve the quality of life of people alongside of other treatments but not instead of other treatments.

Julie: You mentioned lifestyle changes and dietary changes, so perhaps we could just focus on those for a moment. To start off with, could we talk about the role of diet for people with advanced cancer? How would you approach that area?

Judith: So, I see people and I discuss with them diet, and look at the Cancer Council guidelines in eating vegetables and fruit, cutting down on red meat (particularly in people with colorectal cancer), reducing preservatives, the role of sugar and the pros and cons and where the evidence is at the moment with regard to that. And that’s very much a part of my standard consultation, because food is a very important part of people’s wellbeing and their care in their day-to-day life. But if people are malnourished or people have nutritional deficiencies or have complex needs, particularly people with certain cancers like head and neck cancers or bowel cancers or have gastrointestinal cancers, I will then refer them to a dietitian to make sure their nutritional needs are met. So I’ll discuss the different diets that people are interested in and look at where the evidence is, where the safety is and where the risk is for their particular cancer and treatment.

Julie: And what about herbs and vitamin supplements? Are they likely to have a benefit?

Judith: Herbs and supplements, it’s really similar because there’s a lot of information out there on herbs and supplements in cancer. There are some interesting herbs and supplements that are being studied with their potential benefit in improving symptoms related to cancer. But at the moment we don’t have a lot of evidence for many of them. It’s then looking at safety as well. We also know that people walk down the aisle of chemists and they see a lot of herbs and supplements out there and they say, “Wow, I’ve got cancer. Oh, it’s in my liver, I better take this one.” It’s, you know, “I’ve got pain, I better take that one.” And so, there’s a lot of health literacy that’s required.

Julie: It sounds like you’re walking a very careful path. I mean when I was a cancer patient I was told, “Please don’t put anything in your mouth without talking to your team.” And that could be one of my oncologists or it could be the dietitian and that, so that was a really fundamental message, “Please talk to us.”

Judith: If you’re really interested in taking herbs and supplements, talk to your doctor about it, just check that it’s safe. Some of these supplements may be very safe and may be helpful, but some may interact, they may make your chemotherapy more toxic, for example; they may stop it from working as well. So, it’s really important to be mindful that not all natural products are actually safe. And they’re not instead of treatment, they’re as well as.

Julie: Well, that was my next question, because again, as someone with cancer, I had people coming up to me with what I would describe as extreme diets that they felt I should give a go. Now I can imagine if you’ve been told you have advanced cancer, you may be even more susceptible or vulnerable to the hope that there’s a miracle cure that costs a lot of money or there’s an extreme diet. Again, your basic advice to people?

Judith: Some people, some people have no other treatment that is available to them. And then it’s whatever they’re doing, do it safely, and it’s trying to navigate this space. It’s a growing space, it’s a growing industry, and there are very vulnerable people who are receiving cancer treatment, who are paying a fortune for some treatments that aren’t evidence-based.

Julie: So, in that case, it’s so important to check with a doctor on the clinical team, who really becomes a navigator, a navigator through a whole range of options for managing symptoms and wellbeing – with the aim of living as best you can for as long as you can.

Coming back to lifestyle factors, what about alcohol? If you’ve got advanced cancer, should you cut back on alcohol? Should you stop drinking?

Judith: So, we really do suggest to people to reduce the alcohol intake – if you can stop it, that’s even better – but it is related to quite a number of cancers. It’s difficult because in society alcohol is quite a common social drug, but actually its toxicity is quite remarkable.

Julie: Look, can I turn to tobacco now and, you know, if I’m a smoker and I’ve got a diagnosis of advanced cancer, you will be colloquially told, and you sometimes think, “Well, why would I bother to stop now?” What would you say?

Judith: I’ll go back to my very first sentence, which is people are living longer with advanced cancer, so they need to live well. And if we’re saying that somebody with an advanced stage 4 lung cancer may live for many years with new treatments, you should stop smoking. It means that you’ll be less breathless, coughing less and may actually help slow the cancer progression down. I tell everyone to stop smoking.

Julie: You know, it’s hard to stop smoking, and if you’ve got a diagnosis of advanced cancer it may be even harder. So, are we giving people support? What support should you ask for?

Judith: Well, I think a lot of general practitioners are actually really good at giving that support. Speak to your general practitioner. Speak to your doctor –

Julie: – speak to Quitline 13 78 48, they can give you strategies and resources to help you quit smoking, 13 78 48.

Well, you hear a lot about the benefit of exercise for everyone in general, but also for people with cancer in particular. Is exercise recommended for people with advanced cancer, and how realistic is it to expect people with advanced cancer to exercise?

Judith: Well, someone with advanced cancer – and it does depend on what that means, the advanced cancer – but if somebody has progressive cancer and their cancer is getting worse, exercise keeps them independent and improves mobility. It means that your quality of life is improved if you can still get around. We’ve passed the days of tucking people into bed with a cancer diagnosis. People should be exercising from the time of diagnosis right through, and most palliative care services have really active exercise programs because we’ve found that it improves pain and symptom management, but also improves mobility and can improve the ability to stay at home and spend time with the people that you love and care for.

Julie: John turned to exercise after his treatment for advanced brain cancer.

John: Well look, I already knew that exercise was good for body and mind. Yeah, I just very consciously decided, “Okay, I need to start getting out of the house more and get into a bit of exercise,” because I knew from previously, you know, cycling was great for just getting away from it all, and, you know, it’s amazing what just a little bit of exercise can do for your headspace, you know?

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Julie: You’re listening to “The Thing About Advanced Cancer”, a podcast from Cancer Council NSW. If you are looking for more information about exercise, nutrition or complementary therapies, Cancer Council has all sorts of resources and programs. You’ll find links on our podcast page at cancercouncil.com.au/podcasts – just click through to “The Thing About Advanced Cancer” and then click through to this episode, “Living Well with Advanced Cancer”. You can also call Cancer Council 13 11 20 to request free books or just to talk to someone about your concerns.

Judith, we’ve already mentioned that you are an integrative oncologist, and I’d like to explore that just a little more. What exactly is integrative oncology? Because it’s a term many people won’t have heard of.

Judith: Integrative oncology is looking at evidence-based and evidence-informed complementary therapies to work side by side with curative treatments and with palliative treatments and all other disease-modifying treatments, to keep people living well with cancer. So that will include evidence-informed mind-body therapies like mindfulness and yoga and tai chi and qi gong exercises and practices that can improve both the mind as well as the physical being; exercise therapies; acupuncture based on traditional Chinese medicine; and this all works together to provide a more holistic approach to supporting people with cancer.

Julie: Could you give us an example of a common symptom and how the holistic approach of integrative oncology might be helpful?

Judith: So, the most common symptom that people have, particularly with an advanced cancer diagnosis – fatigue. Fatigue is an incredibly difficult symptom to treat in our western approach. The other common symptoms that people have are: sleep disturbance – and sleep disturbance and fatigue are quite closely related – some people will have complex pain or shortness of breath. And that’s just an example of a symptom cluster that we’ll commonly see in people with advanced lung cancer would be cough, shortness of breath, maybe some anxiety and depression, and side effects of the treatment as well. So, well, how do we best improve your fatigue and your wellbeing? So how are you functioning at the moment, how do you eat, what sort of coping skills do you have in place, how do you generally cope with distressing situations, what are your sleep patterns, what’s your sleep hygiene? And then looking at what bloods need to be done, is there anything reversible, any drugs worsening fatigue? And then I make everyone exercise.

Julie: And we use the expression bloods, this is taking blood to analyse various aspects?

Judith: Yes. So, look you know someone’s anaemic or they’ve got a vitamin B12 deficiency or something is out of balance that is potentially reversible that can improve their fatigue. Then I say to people, “Well, the evidence supports that you should all be exercising,” and they say, “Oh my God, I’m so tired. How the hell do I exercise?” So I say, “Well, there’s actually a lot of evidence to suggest that acupuncture can improve your fatigue levels”. People generally go very much out of balance when they get a cancer diagnosis. They’re stressed, there are routine changes, their sleep changes, and so Chinese medicine looks at fatigue very differently. And acupuncture is quite an interesting, very non-invasive with those tiny little needles, technique to improve fatigue. Massage and touch therapies can really improve people’s ability to sleep well and their fatigue – in fact, it’s quite a high-level evidence to support massage during breast cancer treatment to improve fatigue in breast cancer patients. So, before I tell people just to go and exercise, I say, “Well, let’s see what else we can do to actually get you ready to exercise, what sort of exercise, and then our exercise physiologist will develop a personalised program.”

Julie: Many people have told us that fatigue is one of the greatest challenges of advanced cancer. And that has certainly been the case for Susan’s partner, Peter, during his treatment for advanced prostate cancer.

Susan: The latest medication that he started on last year, the biggest side effect of that is fatigue and that has been a big issue for him. He feels that he could just sleep forever. He really, he could sleep all day and all night, and it’s good that he can sleep but he doesn’t want to just sleep his life away. So, he’s made himself just get up and go for a walk, even though he just feels tired all the time. And I think that takes a lot of energy just to resist that feeling of tiredness. He was able to reduce the medication a little bit due to the fatigue and that’s eased it a little. Recently he just thought, “No, I’m going to sort of face this sort of head-on.” And so, he makes himself get up and go for a walk even if he does feel tired, and I think he does feel better for the exercise.

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Julie: Judith, we hear a lot about meditation, mindfulness. Just in a nutshell, what are the key things that meditation can help with?

Judith: Meditation is really being studied quite a lot, but meditation is very helpful for relief of anxiety, improving sleep, improving fatigue – because if your sleep is improved and you’re able to be present that is very helpful – improving your ability to cope with pain and the ability to be with that and be present is enhanced by learning meditation.

Julie: And I believe other things like acupuncture, massage and even counselling and emotional support can all help people manage pain. We are actually going to have an episode focusing on pain in this podcast series, but I just wanted to ask you about medicinal cannabis. That’s something you hear about in the media. Is it available? In what circumstances? Does it have a role to play in managing pain and other symptoms?

Judith: I talk a lot about medicinal cannabis of late. It can potentially improve chemotherapy-related nausea, it can potentially improve really difficult-to-control pain related to cancer and difficult-to-control nausea and loss of appetite. Having said that, we still don’t know. And so, we’re doing studies. So, recently I’m involved in a study, for example, looking at the advanced cancer population, and it’s sponsored by NSW Health, and that’s looking at prescribing different cannabis products for people with advanced cancer with difficult-to-control symptoms of nausea, loss of appetite, and pain, to see how they tolerate it and can it potentially have a benefit.

Julie: Can you get access to it under certain circumstances? Like, are you using it in clinical practice at this point?

Judith: It’s legally prescribed through the Special Access Scheme. So, if you have an indication where cannabis can be helpful – each state is slightly different – then it can be prescribed like any other drug.

Julie: So again, talk to your medical team if medicinal cannabis is something you’d like to know more about.

Look, turning now to other sources of support. What role can psychology and counselling play? I suppose I’m particularly talking about when people experience this kind of spiritual distress as they’re facing up to the end of their life, whenever it’s coming.

Judith: I think the spiritual distress and the existential distress that people feel is often from the time of diagnosis, and it increases and decreases over time. The role of psychology – I mean, we work very closely with the psycho-oncology service and it’s really important to identify who could benefit from counselling and who could benefit from self-empowerment and empowering people to feel comfortable with moving forward to live with their diagnosis, cope with the anxiety before scans and after scans, etc. And so, we use a combination of touch therapies, reflexology which is an amazing calming therapy, and working closely with psychologists. So, it’s this multidisciplinary approach that helps people deal with their anxiety and their distress and their spiritual distress from the time of diagnosis.

Julie: And we are doing an episode in this podcast series on the role of hope and purpose in advanced cancer, and we’ll be talking more in that episode about navigating spiritual or existential distress. We’ve already mentioned that many people with advanced cancer are living for longer and longer. But even if you are lucky enough to be in that group, there is still the challenge of living with ongoing uncertainty, as Annabelle describes.

Annabelle: I don’t know that I necessarily feel I’m a survivor, but I am, in some ways, I am a survivor. And it’s this sort of contradiction, and the challenge of living with the uncertainty never really goes away, there’s always that little, little niggling doubt. So, it’s the luck of the draw to some extent, but I’m hoping that things will remain stable. I know when the response from the PET scan came through that there had been the partial response, my sister said to me, “Oh that’s great, you can get back to your life as normal, get back to how it was,” but there is none of that. I don’t believe that’s possible. I’m putting it to the test but I’m not, I’m not there yet.

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Julie: Judith, while it’s wonderful that new treatments are giving people more time, is there a challenge as well as a joy in that? Do we need to give people extra support?

Judith: Oh definitely. And there is a challenge and there is a huge amount of joy. I mean, all of us are feeling really excited in the cancer space at the moment, for us, that we’re actually keeping people living longer. We were looking at a lovely population of patients actually, the people with melanoma who are responding to immunotherapy, and we said, “Oh, we’re keeping people living longer with stage 4 melanoma. Let’s do a study to see if this holistic package of care actually improves their quality of life.” And so, we’re saying to people, “Well, you need to exercise, you need to eat well, let’s manage your symptoms actively, let’s get you off drugs you don’t need to be on anymore.” And say, “Are these people in the survivorship space or is this a whole new group of patients who are living with cancer as a chronic disease? What resources do we need to put in there and how do we develop the evidence to support these resources?” And that’s, I guess, where our department is really sitting in our approach to care is: keeping people living longer with what was once called incurable cancer, and how to keep people living well with this huge uncertainty of “but you know how long am I going to live for?” and we don’t know.

Julie: So, what you’re saying in a way is that people with advanced cancer need to live a good healthy life, have a good social life, cut down on your grog, stop your smoking, because you don’t know how long you’re going to be here.

Judith: And then the challenge is, how do you live with that uncertainty? And I guess –

Julie: – How do you live with that uncertainty?

Judith: Well, that’s one of the questions that I’m fascinated by. And so, I’ve asked that. So, we’ve done quite a bit of research in that space looking at how do you deal with the uncertainty. How do you live with the uncertainty of having an incurable cancer but it’s responding at the moment to treatment? Do you go back to work? And we ask patients, and they give us the answer, “Well, I want to live the most normal life as possible. I want to live day to day, enjoy my family, find what gives me meaning in life –and meaning may be family – get rid of the stuff that I don’t need in my life, and then stay as well as possible every day.”

Julie: Now if someone’s listening to this and wants access to this integrated, complementary approach – mainstream medicine complemented by other options – where do you get it?

Judith: Well, you get it from our department, that’s one approach. And increasingly, services are developing in this space, and I think ask your GP, ask your oncologist.

Julie: So, if you ask your doctors they can let you know what’s available.

Judith, my final question to you is if you could imagine a patient has just come into your room, they’ve just been told they have advanced cancer. What are your key tips for them?

Judith: Have a really good relationship with a health professional that you trust and feel comfortable with, and find that person. Always be open to looking outside of the box and to looking for strategies to stay as well as possible, and engage in best supportive care. So ideally come and see people like myself to say, “What else can I do to stay as well as possible for as long as possible?”

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Julie: That’s it for this episode of “The Thing About Advanced Cancer”. Thanks to Judith, Annabelle, John 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.

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Julie: If you found this episode helpful, you might want to listen to our podcast on the role of hope and purpose in advanced cancer. In that episode, I talk to palliative medicine specialist Dr Megan Best about making sense of things and finding meaning after a diagnosis of advanced cancer:

Dr Megan Best: I have a favourite cartoon which is Charlie Brown and Snoopy sitting on a wharf looking out at the ocean, and Charlie Brown – in his normal pessimistic way – says, “Snoopy one day we’re going to die,” and Snoopy’s thought bubble says, “Yes, but every day until then we’re going to live.” And I think that’s the approach you need to have in advanced cancer – it’s we will live every day until we die, and I see my role as a palliative care doctor to help people live as well as they can in the time they have left.

Julie: You can find that episode, “The Role of Hope and Purpose in Advanced Cancer”, on our website at cancercouncil.com.au/podcasts, just click through to “The Thing About Advanced Cancer”.

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Julie: 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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