What Does Advanced Cancer Mean?

EPISODE: What Does Advanced Cancer Mean?

[Episode ID]: You’re listening to “What does advanced cancer mean?”, an episode of “The Thing About Advanced Cancer”.

[Music]

Dr Craig Gedye: There’s only one hero in the room. It’s usually the patient. They’re the one who’s come through this incredible challenge, this incredible shock and they come in the door and they hold their head up and they inspire you to keep working on clinical trials. They’re the heroes.

[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 it can mean different things for different people, but the diagnosis usually feels pretty overwhelming. This is the first episode in a series that looks at how people and their family and friends find ways to cope with the challenges of advanced cancer. We’ll be talking to a range of health professionals who work in this area, as well as people who’ve been affected by an advanced cancer diagnosis, and I started off by asking them “What does advanced cancer mean?”

[Montage of voices]:
[Female] So my understanding in a very non-medical way is that it’s a cancer that’s spread from its original position. So say for instance if someone’s had lung cancer as their primary disease, so if that lung cancer then spreads to their bones or their brains or their liver, then that’s what we call advanced disease. So for some people they might be diagnosed with that from the outset or for other people it might be that their cancer recurs.
[Male] It was all very sudden with me, it all happened completely out of the blue. It hit me like a sledgehammer I guess.
[Female] It’s a very tricky one because it’s a long term situation which you hope will be long term but that also that can be a very hard thing for both the person with cancer and for their family and for their carer because it means it’s a long road, it’s going to be a long road.
[Male] Oh, it’s scary. Um, it’s, at the time I thought I was going to die. It was that simple.
[Female] Well I think the definition of advanced cancer is actually changing over time. 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: In this episode, we’re talking with medical oncologist Dr Craig Gedye from Calvary Mater Newcastle. Craig spends a lot of time treating people with advanced cancer and is also researching new treatments.

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.

(To Craig) Well Craig, welcome to Cancer Council’s podcast.

Craig: Thank you so much.

Julie: This series is all about advanced cancer. How would you explain what that means to people?

Craig: It’s different for every person and that’s I think what the the biggest message is that everybody’s experience is different. So building a trusting relationship with your nurses and doctors is incredibly important because what might happen for one person will be very different for another. Advanced cancer could be locally advanced so it could have started to grow in a place where surgery itself won’t cut it out. It could mean recurrent cancer, so you’ve had a cancer before but now it’s come back. It could mean that suddenly you didn’t been discovered to have cancer in multiple parts of your body just as the very first time that the cancer’s come along. So other words like recurrence, metastasis or metastatic, but all of those mean that the cancer is in more than one place-

Julie: -and sometimes I believe it might also be called Stage 4 cancer. Now when you tell someone they’ve got advanced cancer, how do they usually respond? Because, it must not be an easy task to tell people-

Craig: -no, and look by the time you’ve got to meet me often people have been told. Often people have found out from their family doctor, a surgeon. They might have been told if they’ve been admitted to hospital under a medical team that an X-ray shows something, a biopsy shows something. So often I am getting to meet people after they’re processing that, but I remember, often telling people maybe the cancer’s come back and it’s often a huge shock. And so we do special training and make sure we talk to people in a very respectful way when that happens.

Julie: Can it be almost a double blow to be told you’ve got advanced cancer? It’s not just cancer but it’s advanced because some of the people you’re telling are hearing about cancer for the first time, aren’t they? It’s not come back, it’s their first encounter.

Craig: It’s certainly, it’s certainly a shock for them. Absolutely.

Julie: In a nutshell, what can people do to cope with that shock? Your thoughts on actions people can take?

Craig: It’s maximizing information: Bring a friend, bring your loved ones, have someone else listening with you, record the consultation, write down notes, ask for it in writing, just get it explained and recap at the end of the consultation: What if, do I understand this correctly? What is this going to mean?

Julie: Do people often go to Google and what is your view on that if you’ve been told you’ve got advanced cancer, should they go to Google?

Craig: Their instinct is right. But the the outcome is not necessarily guaranteed. The instinct is right. You need lots of information. You’ve got to figure out your situation as quickly as you possibly can. And I think that’s where information has to be very carefully tailored to each person because the differences between different people, even with the same cancer, are so great that what is right for one person is completely wrong for another person. So, it’s the right instinct; gain information, understand and use resources, and we’re very grateful for people like the Cancer Council who gives us so much information to help people with that. But then we’ve got to narrow it down and help people interpret it for them.

Julie: What do you say when someone says How long have I got?’ Do you give a prognosis and if you want to tell them something, how accurate can you be?

Craig: It’s a really important question. And certainly I’ve learned to have the courage in consultations to bring up the topic, to ask people if they want to talk about prognosis and sometimes people don’t want to know. And so I invite them to ask me when they’re ready. Ask me when they think they want to hear about it but also to reflect that you can’t really understand having met someone for the first time, when you don’t have all the information. You don’t know how the treatment is going to go. You don’t know if the treatment’s going to be tolerable. And so you invite people to remember that, you know, now that you’ve seen them, now that I’ve seen the patient, the patient’s seen me, we ‘belong’ to each other, we now, I’m now part of the team and I will walk along with you on this ongoing hmm, ‘journey’. Do we call it a journey?. This is a detour. I like a detour-

Julie: -okay. A detour.

Craig: I call it a detour No one wants to come and see me, it’s a detour in their life. I’m with you as long as you want to see me, as long as I’m the right oncologist for you. I’m now on your team, with your family doctor, with your nurses, with everybody else that you, you choose to be part of your health care team, for as long as you want me to be. So, we we’ll have that conversation as we move along.

Julie: But what if a patient does want to know their prognosis up front? If they say, just tell me straight – what does my future look like?

Craig: Each person’s cancer is different. Each person is different. The treatments they’re on are different, their response to the treatments are different. Maybe you’ll have side effects, maybe you won’t. It’s really ridiculous to speculate the first time you meet someone, but if people press me, they really press me, then I will give a prognosis in units of time because to use a number gives the false impression of accuracy. It gives the false impression that I can predict the future.
[Music]

John: And so I asked my medical oncologist, I said, look, I’ve you know I’ve probably stupidly looked some stuff up online, you know what is my prognosis, I’d prefer to know what it is, you know, give me the truth and he did and yeah and it just confirmed my fears I suppose. So I thought I’d be lucky to make it to a year and I’ve passed that year milestone now. Sometimes the prognosis is based on statistics, well it’s always based on statistics, right? You know it’s entirely possible that you will be on the good side of those statistics, you know, and make it way beyond whatever your oncologist tells you. Erm, so there is hope, is my number one piece of advice – which is harder to see at the start.

Julie: We’ve just heard from John, who was diagnosed with advanced brain cancer. (To Craig) Craig, you said that when you do give a prognosis, you usually give it in units of time. What sort of units of time are you talking about?

Craig: Sometimes a cancer is slow growing and you can confidently say that you know your life might be measured in years or even for very slow growing cancers decades. If you’ve met someone who’s got a very aggressive cancer who’s already very unwell, there are no treatments available, then maybe that person’s life is best measured in weeks. And again the only reason to charge into that conversation the first time you meet someone, is to make sure they’ve got their affairs in order. Have you got a will? Have you got an advance care directive? Have you talked about what you want with your family?

Julie: So that kind of planning and that kind of encouragement to communicate with family and get supports in place, that’s fundamental to being told, you have advanced cancer?

Craig: Look it’s fundamental to understanding any health care but you know certainly it’s writ large when you’ve got the diagnosis of advanced cancer, it’s certainly in your face. And as a society we don’t talk about the end. We don’t talk about death. And so it’s a challenge to have those conversations and to try and get people talking.

Julie: if you were going to say the key things to consider in getting your affairs in order what’s the classic list of things?

Craig: The classic list is to make sure you have a will. If you die intestate then depending on which state or territory you’re in, the situation can be very, very difficult for your loved ones. So number one have a will. Number two is making your own wishes known to your family. If you have a cancer that is that we know is incurable, that we know there’s not there’s not a treatment that can cure the cancer then where do you want to die? How do you want to die? What kind of location, do you want to die at home? Would you prefer to die in hospital or the hospice? And you know what would you like us to do if things could get worse?. The idea of advanced care directives. Again this is not something that Australians have talked about in depth. We are maturing and growing as a people when we starting to tackle these questions.

Julie: And often a social worker is a tremendous person in a hospital to help you with this sort of thing.

Craig: Yeah and the pastoral care services can really help you reflect on those things and what’s important for you.

[Music]

Julie: You’re listening to “The Thing About Advanced Cancer” a podcast from Cancer Council NSW. Cancer Council and other organisations have some excellent resources to help you start these conversations and get your affairs in order. We’re going to put links to those 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, “What does advanced cancer mean?” And you can always call Cancer Council 13 11 20 if you have any questions.

[To Craig] So Craig, you’ve indicated that if someone asks how long have I got, you’re going to try to give a general idea while emphasising it’s an unfolding story depending on how they respond to treatment, but what if someone just looks you straight in the eye and says, “Can advanced cancer be cured?”

Craig: It can in very limited circumstances, and of course the dream for all of us working in oncology and working in clinical trials and research like many of us do, is that we’re trying to increase that number. At the moment it’s a very small number. A very few people can be cured. A lot of people can have their lives made longer and better with treatment. And some people can have durable remissions but sometimes the cancer does come back after treatment. So again everybody’s different.

Julie: You used the expression durable remission. What does that mean?

Craig: So there are increasingly treatments that seem to control the cancer for a very long time. And we don’t know if we’ve cured anybody yet. I’m extraordinarily privileged to be involved in the treatment of people with melanoma and some of the new immune therapies and some of the people we’ve treated with those drugs seem to have survived for a very long time. They ask me, they come to my clinic, ‘Am I cured now?’ And I don’t know. I can’t possibly promise that.

Julie: One of the people with a lot of questions was Ian, who was offered a new immunotherapy treatment after his diagnosis of advanced melanoma.

Ian: Coming from the background that I do, I needed to hear it directly, so he told me exactly what it was and he told me that he couldn’t make any promises, but get ready for the rollercoaster. I had a hundred questions and then some for him, and the vast majority of them he just couldn’t answer, and indeed nor could any doctor. It’s just the vast unknown area that the new treatments in cancer are, that they literally sit in front of you and say, ‘we hope so, but we don’t know’.

[Music]

Julie: Well Craig, in other episodes in this podcast series, we’re going to be talking about the role of the palliative care team and how they can help someone manage life with advanced cancer, but some of the people listening now might already be involved with a palliative care team, while others might feel really scared just at the thought of it. So, just briefly – palliative care, or as it’s sometimes called supportive care – how would you explain it?

Craig: Well you I think you use a better word with supportive care because when I meet people for the first time, say I’ve met someone with advanced cancer for the first time, what we talk about in that that meeting is not just the ways we might be able to attack your cancer but also how we’re going to look after you. So there’s always, you know, what do you need, what support do you need? Do you need to see a psychologist? Do you need pain relief? Do you need to see a social worker? There’s a whole bunch of support there as well as the attacks. And even if we run out of ways of treating the cancer we never stop looking after people.

Julie: You sometimes hear about delays in getting diagnosed, delays in starting treatment, even in cases of advanced cancer. What advice would you give a patient and their family if things seem to be moving too slowly?

Craig: Sometimes the system works very well because the cancer’s arrived in a certain fashion. If you’ve got a spot in your brain it’s certainly the neurosurgeons who are your first friends and they can often do an operation to help and that gets the diagnosis. If you have a spot on your lung, the lung doctors, the respiratory doctors are often the first people to help because they can do a biopsy of the spot on the lung. If you get spots and lymph nodes or the liver or the abdomen, sometimes it’s a little bit unclear how to move that situation forwards. So having a really great relationship with your GP and trying to understand where the cancer might have come from or what the cancer is and very often getting a biopsy is the first right step to making sure you get to the right doctors and the right treatment as quickly as possible.

Julie: So work with your GP if you’re concerned things are going slower than you expected. Work with your GP to get a number of appointments with specialists who might be able to get you actioned into a plan?

Craig: And if you’re developing symptoms for example you’ve got discomfort or you’ve got worsening appetite or you’ve got new problems that you didn’t have before. Don’t just wait for your appointments do politely ask and reflect on that with your GP and see what you can do to make the system work for you.

Julie: Because sometimes if a GP rings the person on the doctor’s desk you can get in quicker than if it’s you.

Craig: Australia is really lucky to have such a fantastic public health system but it’s a very busy healthcare system and there’s lots of people who want to use the system at the same time. And so sometimes politely putting your case forward is not the wrong thing to do. And you know Australians are stoic Australians are brave. They don’t want to make a fuss. Sometimes if you have new information that’s really important. If you’ve got new information for example that you’ve got trouble with your waterworks or trouble going to the toilet or you’ve got any numbness or pain in your back or numbness or weakness in your legs or your feet, those are the kinds of warning signs that we need to move things along faster.

Julie: So tell your GP and ask for help.

Craig: Keep that conversation going.

Julie: Well let’s turn to family and friends, because some of the people listening to this might indeed be the family or friends of people with advanced cancer. What is their role in supporting the patient when they’re faced with this really significant diagnoses?

Craig: You often see people rally around. So it’s often you know practical supports practical measures but it’s also trying to help that person come to terms with the situation and live the best life they can.

Julie: And of course, family and friends may also need to come to terms with the situation, and that can be especially the case for the carer. We’re actually going to have episodes in this series focused just on the carer’s role, so listen out for those. And Cancer Council 13 11 20 is there for anyone affected by a cancer diagnosis – so that’s the person with cancer, but also their carers, family and friends. So call 13 11 20 if you have any questions or just want to talk through your concerns.
[To Craig] Well Craig, we’ve talked a lot about uncertainty and it seems like it’s a characteristic of having a cancer diagnosis – that you’re living with uncertainty, particularly in advanced cancer where treatments are improving all the time. So, how do people manage that uncertainty?

Craig: Often I will talk to people about that uncertainty when we first meet them and then lay out the what the game might look like. We could try this. We could try that. We could try that first and then go back to this if none of that works then we’ll think about that and all the while I’m walking along with you. And if you’ve got symptoms or problems will be trying to deal with that.

Julie: What if I say to you, ‘Look let me know how long I’ve got because I want to go do my bucket list’. People talk about places they want to go, things they want to do. What do you say to people who are prepared perhaps to expend significant resources on international travel.

Craig: So, it’s funny people talk about a bucket list but often I meet people and they really just want to carry on their normal lives. They want to keep making their model aeroplanes. They want to just keep doing the garden. You know the marker of one of my dear patients is how many of his local neighbours has he done the gardening for, and he just keeps doing the gardening for his whole street, and that’s a perfect quality of life for him.

[Music]

Susan: Living with the uncertainty is the hardest thing, it’s very disturbing I think, because all our friends think, ‘oh well, we might go to Europe next year, or we might do this or do that in a few years’ and we don’t have that at all anymore and at first that was a huge, a huge loss, and we’ve sort of come to terms with a little bit now, and now we just think very short term and we don’t plan very far ahead at all. We might plan a little holiday, maybe just for a month or two ahead. Our priorities now are just to enjoy every day, to enjoy and even to enjoy as much as possible every ‘minute’ of every day, which is a bit of a lofty goal and not always possible of course but just to enjoy catching up with the family, or the grandkids, or our friends, or reading books – we love to read. So yes we have had to focus a lot more on all those, just those simple pleasures of life.

Julie: That was Susan, whose husband Peter has been living with advanced prostate cancer for the past four years.

[To Craig] Craig, even if people do decide to concentrate on the simple pleasures, they often still need to make decisions about things like whether to keep working, how to make their money last, whether they can afford a holiday?. So how do you advise your patients on planning for the future when you’re living with so much uncertainty?

Craig: It’s really hard. I often say to people you know plan well let’s plan for the worst and hope for the best. Get your affairs in order. Do your paperwork etc. etc. but then let’s hope for the best. And then you know when you’re when you are living with an uncertainty I say to people you know live your best life. Do what’s right for you.

[Music]

Julie: That’s it for this episode of “The Thing About Advanced Cancer”. Thanks to Craig, John, Ian and Susan for sharing their insights. And we’d also really 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 always 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 genuinely love to hear from you, so leave us a review on Apple Podcasts or on our website. And if you’d like to subscribe for more free episodes of this series, 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 “Living Well with Advanced Cancer”. In that episode, I talk with palliative care specialist Associate Professor Judith Lacey about how to keep yourself as physically and emotionally well as possible.

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 for as long as possible, for however long that is and into survivorship.

Julie: You can find that episode “Living Well with Advanced Cancer” on our website at cancercouncil.com.au/podcasts, and 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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