Dr Craig Gedye, medical oncologist and cancer researcher
In this episode, the thing about advanced cancer is that treatments are developing rapidly.
But is there more hype than hope? How do you know if these new treatments will work for you? And when is it time to stop treating the cancer and focus on quality of life?
Dr Craig Gedye teams up with Julie again, to tackle these questions and much more.
Craig discusses the role of surgery, radiation therapy and chemotherapy in treating advanced cancer. He also explains that the newer treatments of immunotherapy and targeted therapy have produced some remarkable results, but they are effective for only a small number of people.
This episode also outlines the benefits of joining a clinical trial, the financial impact of cancer treatment, and how palliative care can help at any stage.
— Dr Craig Gedye
Want more information or support?
If you heard something mentioned in the podcast, you’ll find a link to it below. We’ve also added links to other sources of information and support.
From Cancer Council NSW
- All our advanced cancer resources – links to Cancer Council’s resources for people affected by advanced cancer
- Cancer treatment – easy-to-read information about chemotherapy, radiation therapy, surgery, immunotherapy, targeted therapy and clinical trials
- Palliative care – learn about how palliative/supportive care can address your needs in a holistic way
- Legal, work and financial issues – links to our resources on managing the practical challenges that may come with an advanced cancer diagnosis
- Cancer Council 13 11 20 Information and Support service – call 13 11 20 Mon–Fri, 9am–5pm, to talk confidentially to a health professional about anything to do with cancer
- Cancer Council Online Community – a supportive online community for people affected by cancer
- Support for people coping with cancer – support online, in person and by phone
- Transport, accommodation and home help – practical information and support during and after treatment
- Legal and financial assistance – practical advice and support during and after treatment
- Podcast: Caring for Someone with Advanced Cancer – Dr Toni Lindsay talks about managing the challenges of being a carer
- Podcast: Living Well with Advanced Cancer – Dr Judith Lacey talks about how to keep yourself physically and emotionally well while living with advanced cancer
- Podcast: Making Treatment Decisions – an episode from our other podcast series The Thing About Cancer
- Podcast: New Cancer Treatments (Immunotherapy and Targeted Therapy) – an episode from our other podcast series The Thing About Cancer
- Cancer Directory – online directory of trusted Australian cancer care publications
- Canrefer – find cancer specialists and services near you
- Optimal care pathways – a step-by-step guide to treatment for different types of cancer
- Cancer Institute NSW – question prompt lists for people with cancer (in 20 languages)
- Cancer Council Australia – clinical guidelines and reliable information for cancer patients
- Cancer Australia: Clinical best practice – clinical guidelines and reliable information about cancer
- Cancer Australia: Australian Cancer Trials – search for a clinical trial
- Pharmaceutical Benefits Scheme – details of medicines subsidised by the Australian Government
- Videos: What to expect from immunotherapy – a series of videos about having immunotherapy produced by Peter MacCallum Cancer Centre
- Palliative Care Australia – information, support and a searchable directory of palliative care services
- More about Craig Gedye– Craig’s University of Newcastle profile explains how his cancer research takes a tailored, rather than a ‘one-size-fits-all’, approach to patient care
You’re listening to “Treatment Options for Advanced Cancer”, an episode of The Thing About Advanced Cancer.
Dr Craig Gedye: The anticancer treatment is just one hand the other hand is always out reaching out to you trying to solve your problems. Even if we ran out of ways of treating the cancer, we never stop looking after people.
[woman] The Thing About Advanced Cancer
[man] a podcast from Cancer Council NSW
[woman] information and insights
[man] for challenging times.
Julie McCrossin: Hello, I’m Julie McCrossin and today the thing about advanced cancer is that treatments are developing rapidly. But is there more hype than hope? How do you know if these new treatments will work for you? And when is it time to stop treating the cancer and focus on quality of life? We’re talking to Dr Craig Gedye, a medical oncologist from Calvary Mater Newcastle. Craig spends a lot of time treating people with advanced cancer and he’s also very involved in testing 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, welcome back to Cancer Council’s podcast, Craig. Just to begin, for the totally uninitiated, what exactly is a medical oncologist? What do you do?
Craig Gedye: So we look after people with cancer and we give them medicines that can sometimes control the cancer but we also help them manage the symptoms of the cancer and we often take on the role of being like your second general practitioner, your second GP. We help liaise with the surgeons, the radiation doctors, the nurses, everybody else who might be looking after you. And we often become the person who helps you understand where you're going through your journey.
Julie: It’s a natural reaction after a cancer diagnosis to start madly Googling information, but that can lead you to some pretty scary or misleading websites. Would your advice be to ask your doctors and team for the best sources of information first?
Craig: It is. And it is also making sure that you're lining up your questions. Doctors don't mind answering questions, we like asking questions. Write them down, get them recorded, make sure you've got all the information you need and doctors increasingly are comfortable with you recording the consultation that you're having. Not every doctor but increasingly we understand that it actually really helps people and makes people very satisfied. And when you've figured out, you’ve got all the right questions and your doctor is able to help you answer all the right questions for you, then you'll understand what advanced cancer means for you. Because for some people the right first treatment is no treatment. For other people it's an emergency biopsy and emergency treatment, there's such a great diversity.
Julie: So, write a list of your questions before seeing your doctor, and then maybe ask your doctor if it would be okay to record the conversation, say on your phone. You mention the question of treatment for advanced cancer. My understanding is that these days, having a diagnosis of advanced cancer means you will still often be receiving treatment. So is it about clarifying what it's for, the purpose of the treatment.
Craig: Exactly, and even some cancers the right first treatment is no treatment because the cancer, you live so long with a cancer, without needing treatment. One of the cancers I treat is kidney cancer and the right first thing to do in some people, is to do nothing and just watch and wait because the cancer grows so slowly over years, even decades, that you can just keep people side effects without actually improving their quality or length of life. As opposed to other people who've got an advanced cancer that might be causing them immediate symptoms and you need to start treatment chemotherapy, immediately, that day, that night everybody's different.
Julie: I want to talk to you to get a sense of the sort of treatments that may be offered and particularly to hear about these new treatments, immunotherapy and targeted therapy. So when it comes to surgery, radiation therapy and chemotherapy, the traditional therapies for what purpose would they be used if someone has an advanced cancer diagnosis, let's start there.
Craig: So with the traditional treatments, surgery is very helpful still with the cancer’s in one place and causing trouble. Classic example is if the cancer's in your brain and it's causing a lot of symptoms. A neurosurgeon can take it out and make you feel better. Radiation, if you've got a cancer in a bone that's causing a lot of pain, again perfect opportunity to give you relief, control the cancer and then move on to maybe a systemic treatment, a treatment that works on cancer anywhere in your body. And the systemic treatments are chemotherapy and the new drugs: targeted therapy and immunotherapy. Chemotherapy in people with advanced cancer, depends on the cancer, completely depends on the cancer. And so this is where the conversation, understanding who you are and what your cancer is going to do, and that conversation with your oncologist is so important because some chemotherapy can potentially control the cancer for a limited period of time. In other patients it can control the cancer for a long period of time. It's very, very dependent.
Julie McCrossin: Look it can be difficult to decide whether to go ahead with chemotherapy, particularly if you’re already feeling unwell and you’re not sure how much time you have left. This is the dilemma that faced Susan’s partner Peter soon after he was diagnosed with advanced prostate cancer.
Susan: He still thought he was very, you know his prognosis was really poor, so he thought he would die and so he decided, he said that he wouldn’t have chemotherapy because he felt that he was already vomiting and he was already really ill and it would just make him feel worse, and make the last few months of his life even harder. And the nurses at the cancer centre were very good and just suggested that perhaps he could just try one chemotherapy session, and then they said well perhaps you could try two, and he ended up completing the full eight sessions, and by the end of chemotherapy was much improved. So that’s now four years ago almost, so he’s done remarkably well, but it’s been tough.
Julie: So let's turn then to these newer treatments immunotherapy and targeted therapy. Can you explain what they are and give me examples of how they may be used for someone with advanced cancer.
Craig: So the immune therapies we have today are called checkpoint inhibitors. In some people with some cancers your own immune system is trying to attack the cancer, it's doing its best job, but the cancer is holding the immune system back with one last one last line of defence. And the checkpoint inhibitors lift that checkpoint, they remove that barrier and let the immune system in to attack the cancer. It’s just unlocking an immune response that’s already there and this is why there’s hype and hope about the immune therapies because in a few people they really work like magic. They’re amazing – for a few people because those few people are well, their immune system is attacking the cancer, they just need that one more thing to get them over the bump and voilà. But, in many people if you're already unwell, if your immune system is not attacking the cancer, if your immune system doesn't even recognize the cancer, these drugs they certainly don't have any benefit. And so we're facing this incredible, this incredible hope from the public for these drugs but we have to be very, very humble because they while they certainly help some people, and there are celebrities who've been helped by these drugs, they fail many many other people. So, we have, we must be very humble about it and move forward very carefully.
Julie: Humble is a great word. And I guess it's again about the partnership between the clinical team and the patient so that you can try to give them realistic expectations and also to help them live with ambiguity because you're what you're basically saying if you're not sure if it's going work?
Craig: I'm not sure about most things in clinic to be honest. And the more experience you get, the less you should be, right? There are so many variations between different people and how their treatments will respond.
Julie: And that's hard for patients isn't it because we want to see you as heroes in white coats (no no) whereas you're making clinical judgments in an unfolding scientific adventure...
Craig: 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.
Julie: So, let’s hear from one of those heroes. Ian was offered immunotherapy after multiple tumours in his lungs and brain turned out to be advanced melanoma.
Ian: The chemotherapy was one option but he told me about a new range of drugs, basically called immunotherapy. They’d had some success with them in melanoma, with certain percentages of people responding to it in ways that it would slow the tumour’s growth, give them extra time, it would stop the tumour’s growth and just make it stagnant and they were hoping it could potentially make tumours disappear. Yeah that started and once every three weeks I’d go down for an infusion. I had very very few side effects, I was really, really lucky and it was just a three month scan I had, three months after the beginning of treatment which is standard for that type of treatment. I had my first scan and it was gone, the cancer. It hadn’t stopped, it hadn’t slowed down it was gone, completely. I didn’t really even know it could go to that level – and it is a small percentage of people that get to that level. Yeah, that was my lottery moment without any doubt whatsoever.
Julie: And as Ian says, he was one of the lucky ones and immunotherapy doesn’t work for everyone, but it does offer hope for some people. Well, let’s turn to targeted therapies. What are they and how much hope is there there?
Craig: So targeted therapies are again very useful. They work against proteins. Proteins are the machinery of your cells. And so people have learned to design these small chemicals that will block the machinery of cancer cells. And so the very first one was for breast cancer, decades ago, Tamoxifen and it's a treatment that blocks the hormone receptors in breast cancer and occasionally other cancers. And learning from that lesson, people have used chemistry to design these drugs to block different proteins. They work by just trying to stop the machinery of the cancer from growing.
Julie: So targeted therapy is another option that may be helpful to you if you have advanced cancer but you can't generalise.
Craig: Absolutely not. So, to the point when we learn about a new targeted therapy that might be for a specific group of people with a cancer, we actually redefine that cancer as whether or not you have that marker or you don't. So 12 percent of people with lung cancer might benefit from one of these tablets and 30 percent of people with a melanoma, 40 or 50 percent or 60 percent of people with breast cancer. 90 percent of men with prostate cancer will benefit from these kinds of hormone targeted therapies, but it depends on the cancer.
Julie: Okay so thank you, so it's another question to ask: ‘Doctor would immunotherapy or targeted therapy have a role in my treatment is that possible?’
Julie: Clinical trials, just in a nutshell, what are they and when may they be an option for someone with advanced cancer, just in a nutshell.
Craig: Clinical trials are to test new treatments. So, in some respect they're always an experiment. They come in three phases - the first phase is to see if the drug is safe or treatment is safe. The second is, if it proves to be safe, does it help people? And if it does help people how much does it help them. Is it better than the standard treatment?
Julie: So that’s the third phase, working out if it’s better than the standard treatment. So if you’re a patient, why would it be worth joining a clinical trial?
Craig: A clinical trial is often a great way of taking some treatment because even if you, even if it's a trial where you randomly, and not all trials have a random element in them, but if there's a toss of the coin in the trial and you even get the standard treatment, people who take part in a clinical trial and even get the standard treatment do better than average.
Julie: So you might get in some clinical trials you might get the standard treatment or you might get the newer treatment.
Craig: You might.
Julie: So it's worth asking Is it possible for a clinical trial could help me if you have advanced cancer.
Craig: And clinical trials are right at all times during your treatment. There could be a clinical trial right now to take as your first treatment. The cancer didn't respond to that, maybe there's another clinical trial and down the line maybe a few if we've run out of standard treatments for people, maybe a Phase 1 clinical trial is right for you, if you're well enough, if it's not too inconvenient for you to take the trial.
Julie: Of course with advanced cancer, your doctors may recommend that you have palliative treatment, or it might be called supportive treatment. And we’ll be discussing the role of palliative care and how symptoms can be managed in other episodes in this series, but just briefly Craig, what is palliative care? And how does it link in to advanced cancer?
Craig: I think you used 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 ran out of ways of treating the cancer we never stop looking after people.
Julie: You can have a diagnosis of advanced cancer, you may even have been told you have weeks or months to live. But it doesn't mean there isn’t active treatment to reduce discomfort.
Craig: Yeah. The anticancer treatment is just one hand the other hand is always out reaching out to you trying to solve your problems.
Julie: You’re listening to The Thing About Advanced Cancer, a podcast from Cancer Council NSW. If you are looking for more information about cancer treatments or palliative care, Cancer Council has a wealth of information. You can visit our website at cancercouncil.com.au and you can also call Cancer Council 13 11 20 to request free booklets or just to talk to someone about your concerns.
Julie: So Craig, can we turn now to that challenging question that some patients may face, which is when is it time to stop cancer treatment? How is that decision made?
Craig: I think it's again to reflect that this is a partnership between the patient and whoever they choose to be their doctors to be their healthcare team. And I always describe it to my patients as a handshake at the end of every discussion - we’ll review how you are, what experience you're having of the treatment, side effects, do you think the treatment's helping you? Is it worth your while --
Julie: So it's almost like you do a cost benefit analysis the way you describe it.
Craig: When we meet someone and we agree to take a treatment, well the patient chooses to take a treatment with me, we sign a consent form because you know it's the minimum standard of you know communicating what the treatment will do. But consent is not just a one-off signature on a piece of paper. Consent is an ongoing dialogue between you and your doctor, and as I said it's a handshake you've got to both put your hand out. If I see someone who the treatment is not helping, the treatments causing side effects or there’s something else we should do better, I'm not going to put my hand out, I'm not going to shake hands with you on that day. If you are having a poor experience of the treatment, you can always say, look, I don't want any more of this. Both of us have to agree to continue the treatment each time we meet and so that's where you develop a relationship with someone as you go along.
Julie: Well let’s hear from a patient who’s had to grapple with these decisions.
Bryce has had major surgery and chemotherapy for advanced pancreatic cancer, and is now receiving palliative chemotherapy. We asked him if the treatment was worth some of the challenging side effects that he has experienced.
Bryce: As much as there are aspects of it that are confronting it has given you what I would call an extension of life, which for most of us is something that we want. I would think that if the balance got out completely though, that the side effects were more impacting than, and left you with very little positive in your day that you might contemplate then deciding that it wasn’t worth it.
Julie: Look I've heard I've heard it said it's about working out what your priorities are. And for some the quality of their life is more important than the length. I sometimes think it's probably not that easy that your sense of what's important might change over time. But what I'm hearing from you is keep talking to your doctor about how effective the treatment is and what price you're paying for that effectiveness.
Craig: We’ve done these – other people have done these really Interesting studies where they talk to people about their preferences and then go back and talk to them after something horrible has happened. The classic is someone who has a spinal cord injury and becomes a quadriplegic. You know people say ‘oh I wouldn’t like to live’. And then you go back and talk to them and they’ve become Olympian athletes. So our experience, our situation changes and our response to it changes, and so we would need to respect that. Again I keep coming back to this theme but everybody's an individual, every body's experience is different and it's rude to presuppose one experience will all be appropriate for everybody.
Julie: You hear a lot these days about the cost of cancer, it’s even sometimes called financial toxicity. How much of an issue is that with advanced cancer? And does it affect decisions about treatment?
Craig: We live in an extraordinary privileged country. We've got a Medicare system that gives us access to some of the world's best health care and every time we moan and complain about this that or the other when we look at the whole picture we've got an extraordinary system. And so, the diagnosis, the review, the treatment is largely subsidised. Now that's one side of the coin.
Julie: And what’s the other side of the coin?
Craig: The impact of an advanced cancer is that there's a lot more to do. There's a lot of tests, there's a lot of appointments, there's a lot of waiting around, there's a lot of uncertainty of when things are going to be, and that's going to impact on your ability to earn an income and the income of your loved ones. Suddenly maybe someone's got to drive you around, suddenly people are going to take time off work. So, there are big impacts and again speaking to the social worker reaching out for advice reaching out to the Cancer Council can help you manage that as best you possibly can.
Julie: Cancer Council 13 11 20. There is some assistance available in certain circumstances financially. Always worth talking to Cancer Council 13 11 20. Is there more you’d like to say around this financial side of an advanced cancer diagnosis?
Craig: Sometimes people wonder whether or not paying for new medications that are not on the Pharmaceutical Benefits Scheme is worthwhile. And that's a really tricky question. Sometimes it does take time for the processes and the wheels, the wheels of government to move and treatments are not yet available, but sometimes the treatments are not reimbursed and not available for a very good reason - is that on average they don't improve the lives of people with the cancer. So, that's an extremely difficult conversation. But before you dip into your superannuation, before you sell your house, before you try and raise a lot of money, talk to your oncologist about what the real benefit of a treatment might be. You occasionally hear anecdotes of people who've taken out large lines for treatments but often, and again we're very lucky in Australia, the treatments that are proven to work very often get reimbursed through the PBS.
Julie: Look to close, if someone is listening to this right now and they have just been told they have advanced cancer, what would your key advice be?
Craig: You need to understand your cancer. reading things on the Internet and googling things is going to give you a broad generic smear of information but it's not going to mean anything for you. Your cancer is unique to you. You are unique and so working with your doctors as promptly and efficiently as possible to find out what your cancer is, where it is, what symptoms you might get, what treatments there are, what other things you need to do. Getting all that and getting all that in a nutshell is I think the most important. And ask for help. Ask for help from family and friends, and your family doctor is a wealth of information at this time as well. But try to find out what it really means for you.
Julie: That's it for this episode of The Thing About Advanced Cancer. Thanks to Craig, Susan, Ian and Bryce 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 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. If you'd like to subscribe for more free episodes of this series, you can do that in Apple Podcasts or your favourite podcasting app.
If you found this episode helpful, you might want to listen to our podcast on “Caring for Someone with Advanced Cancer”. In that episode, I talk to clinical psychologist Dr Toni Lindsay about the impact on the carer and how they can look after their own needs while supporting the person with cancer:
Toni: My general rule in life is ‘simpler is always better’. So if you’re waiting for a week to go to Hawaii so you can completely recharge your batteries, it’s probably not going to happen whereas if you go, ‘you know what? I can probably grab 15 minutes while I’m walking up to the chemist in the sunshine’ that’s a much easier way of going about it. If we set expectations that you’re going to be able to do something really kind of momentous every day that’s going to make you feel wonderful, that’s great but we might not get there, so how do we grab these little snippets of time. And you’re not going to get a ‘full tank’ in the midst of all of this, but we just need to get you off of ‘empty’ so the car can keep running.
Julie: You can find that episode “Caring for Someone with Advanced Cancer” on our website at cancercouncil.com.au/podcasts, just click through to The Thing About Advanced Cancer.
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.