Making Treatment Decisions
The thing about cancer is that it can be hard to know if you are making the right decisions about your treatment.
How much choice do you actually have? How do you know you have explored all your options? And once you know the options, how do you decide the best way forward?
In this episode of The Thing About Cancer podcast, Julie sits down with Professor Lyndal Trevena to tackle these questions, and much more.
As a practising GP, Lyndal is well placed to talk about these issues. She has spent many years guiding patients with cancer and doing research about how patients make decisions.
Answering the big questions
Lyndal answers many important questions on cancer treatment choices.
Questions like: What kinds of things do doctors weigh up when choosing the right treatment? How do you know you’re seeing the best specialist for your cancer? Who makes up your multidisciplinary team? What is a multidisciplinary team?
Lyndal explains that a multidisciplinary team is made up of the health professionals who will treat and support you through your cancer treatment. Your team might include a surgeon, radiation oncologist, medical oncologist (who prescribes drugs), pathologist, nurses, social workers, your GP, and other healthcare professionals.
Everyone’s situation is unique, and treatment options vary
What if your cancer can be treated with two or more options? For example, if you have early prostate cancer, you may have a choice between surgery and radiation therapy. Women with early breast cancer may be offered the option of removing just the lump (lumpectomy), but some will still choose to remove the whole breast (mastectomy).
What if you have advanced cancer? Should you continue with intensive treatment or concentrate on supportive treatment?
When it comes to cancer, every situation is unique – so although it can be helpful to learn about someone else’s cancer experience, your treatment pathway may be very different, even if you have the same cancer type.
And sometimes, it’s not just the person with cancer that has an opinion about the treatment pathway – partners and families can also get involved, and may sometimes take a different view to the person who is actually undergoing the treatment. In this episode, Lyndal explores this scenario, and different ways to approach these sensitive topics with the people closest to you.
Throughout the entire journey, always seek support
Cancer can be confronting, and you may often feel overwhelmed as you see doctors and weigh your treatment options. So it’s a good idea to take a friend or partner with you to appointments to take notes. Another option is to ask the doctor if you can record the conversation on your smartphone.
You can also use a question checklist, such as those found at the back of Cancer Council’s Understanding Cancer booklets and on the website of the Cancer Institute NSW.
What about second opinions?
Of course, when you get diagnosed with cancer, there can be an urgency to start treatment. But what if you want a second opinion? Will you do yourself damage if you wait? Will you offend your specialist?
Lyndal tells us that it’s important to feel as sure as possible, and there is usually time to get more than one perspective and even do your own reading.
Getting reliable information
In this podcast, you’ll find out how to find information on your treatment options, online and offline. This can be confusing in the age of the internet, when there’s so much digital content out there – what’s reliable, and what’s not? Lyndal suggests going to Cancer Council NSW and other reliable sources – and also dispels some myths about alternative therapies that claim to treat cancer.
And what if you have cancer, but live in a remote area? Lyndal tells us the different options out there if you have cancer and live far from a major city.
The podcast also looks at weighing up side effects against the benefits of treatment, but explains that there are now much more effective ways to manage the side effects of cancer treatment. Lyndal also explains what clinical trials are, and how you can access them as a possible treatment pathway.
Want more information or support?
If you heard something mentioned in the podcast, you’ll find a link for it below. We’ve also added links to other sources of information and support.
From Cancer Council NSW
- Cancer treatment – information about chemotherapy, radiotherapy, surgery and other cancer treatments therapy, immunotherapy and targeted therapies, can also be used for some types of cancer
- Making treatment decisions – outlines the steps in making an informed decision about cancer treatment
- Easy-to-read information about cancer – cancer types, treatments and issues
- 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 about cancer
- Cancer Council support for people coping with cancer – information and support online, in person and via phone
- Cancer Council Online Community – a supportive online community for people affected by cancer
From other organisations
- 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
Transcript of Episode 6: Making Treatment Decisions
The Thing About Cancer podcast, Cancer Council NSW
[woman] The very essence of all cancers is a change in the way that cells divide.
[man] I remember sitting in there thinking, you know, it’s not happening, it’s not real, it can’t be real.
[woman 2] It’s something that we don’t talk about.
[woman 3] This feeling of being overwhelmed − it will get better once you have a plan and you know what to expect and what’s going to happen. It’s not going to be like this all the time.
[various voices] The Thing About Cancer: A podcast from Cancer Council NSW. Information and insights for people affected by cancer.
Julie McCrossin: Hello, I’m Julie McCrossin and today the thing about cancer is that it can be hard to know if we’re making the right decisions about our treatment. How much choice do we actually have? How do we know we’ve explored all our options? And once we know the options, how do we decide the best way forward?
Lyndal Trevena: I think a lot of people facing cancer treatment decisions − obviously it’s very difficult − one of the things that often weighs on people’s minds, at that time and later on, is “Did I make the right decision?” And I think, you know, you can be satisfied that you have if you’ve done your best to get all the information, consult all the right people, weigh it all up and that’s the best you can do at that time. So, do that, do that when you have the opportunity, and then don’t look back.
Julie: We’re talking to Professor Lyndal Trevena − a practising GP who co-leads the Discipline of General Practice at the University of Sydney. Lyndal has guided many patients with cancer and has also been involved in research about how patients make decisions. Just to be clear − this podcast contains general information only, so we recommend you talk to appropriate professionals about your individual situation. You can also call Cancer Council 13 11 20 if you have any questions.
Before we hear more from Lyndal, here’s Georgie. Like many carers, Georgie was closely involved in the decision surrounding her husband’s cancer treatment.
Georgie: People assume that it’s all going to be okay, if we do what the doctor says ’cause we’ve always had this belief − do what the doctor says. And through this, Rodney and I, didn’t not believe in the doctors, we didn’t not, ah, trust them − we totally trusted them. But we did ask questions. And it was really rewarding that all of our doctors said, “That’s a really good question, I’m actually not 100% sure, let me check this out.” If you’ve got a doctor who will not answer your question or who will not listen to you − get another doctor.
Julie: At the start of this episode, GP Lyndal Trevena spoke about people wondering if they’d made the right decision about their cancer treatment. But Lyndal, do patients really have a choice about treatment? I mean, shouldn’t we just follow the doctor’s instructions?
Lyndal: Well, it depends, Julie. Look, there are some situations where there is one preferred and best treatment, but most of the time there are some options and there are some choices. And it’s well worth keeping that in mind. And even if there is sort of one main recommended treatment, you have a right as a patient to know what that will involve.
Julie: We often hear the term “shared decision-making” in discussions about health care these days, and I think you’re involved in actually teaching it − what does that mean?
Lyndal: Well, shared decision-making is where the healthcare provider and the patient enter into a real partnership to decide together. There’s an exchange of information back and forth − that’s important that the doctors know what’s important to you, what are your preferences, what are your beliefs, what are your values. And it’s important that you know about the options and benefits and harms of those. So there’s this exchange of information but importantly, you are an equal partner as the patient at the table. The doctor’s not the god sitting up high looking down on you. You are an equal partner and that’s what shared decision-making is − it’s patient-centred care, where you make decisions together. Now some people find that they don’t want to make the decision, and that’s okay. If it’s too burdensome, if it’s too difficult, it’s okay to say, “Look, Doctor, what would you decide? What would you recommend?” But that’s on the spectrum of shared decision-making and it’s part of what we need to do, is work out how much information people want and how much involvement they want in the decision, because not everybody wants to be involved and we need to respect that.
Julie: For a doctor or a specialist of whatever kind, when they’re considering what are the best options to offer the patient for treatment, what are the sort of key things that they’re weighing up?
Lyndal: Well, there’s lots of clinical factors − doctors tend to focus on the clinical factors and this is where the patient has the best value to add to that decision-making process because the patient and their family, and often their GP, will be the ones to know much more about them as a whole person. You know, all their other conditions they might have, what their life’s like, what their social circumstances are like, their family’s like and all of those factors can come into play as well. But you’re treating cancer team will mainly focus on the clinical, scientific, best available evidence, and try and work out what would be the best thing for you.
Julie: And are there are range of different approaches? Because it might depend on your age, your gender, the type of cancer, how advanced it is? Are they the sort of things they’re working through?
Lyndal: Well look, age is an interesting one because I think, you know, 70 is the new 60 and all the way down the line these days, so I actually don’t believe age should be a factor, it might be to an individual. More and more, older people are being offered curative treatment, it that’s an option. So what they do weigh up in the team meetings is all the different scientific components to the decisions. So these days, most of the big treatment hospitals have a multidisciplinary team.
Julie: So what is a multidisciplinary team and who are some of the classic clinicians that are in it?
Lyndal: So the team is cancer specific. So there’ll be a lung team, a breast team and so on, at the big hospitals anyway. And the surgeon will be there, the pathologist will have the results of any biopsy or lump that’s been removed, they’ll have the x-ray and imaging if that’s been done. And the radiation oncologist, if that’s appropriate, so they’re the people who do radiotherapy and then there might also be a medical oncologist.
Julie: And what do they do?
Lyndal: The medical oncologists are the people that prescribe drugs like chemotherapy. There may even be others involved like nurses, social workers. Each hospital setting is a little bit different, but in the main, you’ll have all the main clinical brains to give their best opinion about what would be the best treatment for your particular cancer.
Julie: You mentioned that for some cancers there are predictable treatments − how does that work? Do they have set guidelines? Is that something patients can see?
Lyndal: Yes – there are best practice guidelines for most of the cancers and they are available publicly. If people are interested in looking for those, I’d strongly recommend that Cancer Australia website. Cancer Council also has a lot of good information, but I know that the Australian government’s Cancer Australia website has best practice guidelines publicly available for the common cancers anyway.
Julie: Yes, for anyone who does want to track down those guidelines, you can find links to both Cancer Australia and Cancer Council Australia on our podcast page: cancercouncil.com.au/podcasts − just click through to this episode. But Lyndal, are there some cancers for which there are no set guidelines?
Lyndal: Well, there are some rare cancers and of course that can be quite challenging. What we have though is most of the cancers are the common ones.
Julie: And can you give me some examples of cancers where it is really common that the patient will be offered two or more options and they really will participate in the decision-making because there are pros and cons for each approach?
Lyndal: Yeah, I think probably the best example of that is prostate cancer. If you have early prostate cancer, there are a number of different ways to go. You don’t have to have surgery. There are actually very, very good, if not slightly better, treatment outcomes with radiotherapy and a lot of men go under the knife without realising that. So they definitely have a role to play.
Julie: So would it be wise if you’re a man with prostate cancer to seek an opinion from a radiation oncologist as well as a surgeon?
Lyndal: Very much so. And often what happens is that a man has their biopsy done by a surgeon, the urologist, and naturally they think, “Well, I’ve got cancer. You must cut it out, quick, get rid of it.” But, this is where I think actually the GP can play a really important role. Don’t be frightened to go back to your GP and say, “Hang on a minute, are there any other options?” And they can refer you on to radiotherapy unit.
Julie: Are there other cancers where that choice of possible different treatments may come up?
Lyndal: Oh yes, lots of them. Breast cancer’s one where there are different options. Some women will choose to have the lump removed, some women will choose to have the whole breast removed, some will choose to add on other therapies like radiotherapy and chemotherapy if it’s offered. But you have to trade off the side effects for the potential survival gain, and that’s where that balancing act goes.
Julie: And what about advanced cancer? For some who may be listening to this who are weighing up, “Do I continue with intensive treatment or do I take supportive treatment and focus more on my quality of life?” Is that another area where the individual patient may have some decisions to make for themselves?
Lyndal: Yeah, look, everybody’s circumstances are different in that one and I think sometimes our families actually want us to go through more treatment than we’re prepared to face. We’ve certainly seen that in some of the studies in younger women who have advanced breast cancer. It’s a tough one because they’re put under pressure from their loved ones, and often people will go through a lot of suffering for them, not necessarily for themselves. So it’s not just the patient, you know, it’s a whole family, and it’s a group decision sometimes too which makes it even more complex.
Julie: Just coming back to that thing of asking your team. Sometimes the medical oncologist or the radiation oncologist, the surgeon, are rushed people. Their rooms are full, or the waiting area in the public hospital is full, and you can feel the pressure to not take too long. Is it a good idea to actively inquire as to who else on the team could talk to you about different aspects of your care?
Lyndal: Yes, you can do that. I would strongly recommend that people look at the question prompt lists that are available on the Cancer Institute NSW website. They’ve been developed in conjunction with patients and they have a list of questions that you might want to think about asking your specialist. There’s one for oncologists, there’s one for surgeons, there’s one for haematologists. You can print them off, you can mark the things that you are particularly sure that you want to ask or keen to ask. And that might be about other treatment options, that might be about other specialists or it might be about side effects − all sorts of things. But those question prompt lists have been developed to include the most commonly asked questions from patients who’ve been in your shoes, so they’re a really good resource, you can scribble on them, they can be in an aide de memoire when you go into the busy specialist and, you know, that can actually save everybody some time and help you to get the answers that you specifically want.
Julie: We’ll put a link to those Cancer Institute question lists on our podcast page. Go to cancercouncil.com.au/podcasts and click through to this episode. And I know there are also question checklists at the back of Cancer Council’s yellow information booklets so that’s another thing you can look at.
Look, I’ve heard it said too that it can be a good idea to always take a friend or partner with you, or even some people ask their doctors if they can record the conversation on their phones, so they can listen back later. What do you think about those ideas?
Lyndal: Look, I think they’re great ideas because, you know, you get a real information download and data dump and, you know, when you’re feeling sick − you just can’t take it in. You’re in shock, you’re feeling awful, and how on earth can you remember all those statistics and all that information, and then you’re supposed to go home and make a decision − it’s very difficult.
Julie: And another factor that might influence a patient considering whether to get, for example, a second opinion as you’ve indicated may be useful, is there’s a sense of urgency sometimes with cancer − we need to start treatment immediately and if I seek a second opinion, you know, will I do damage to myself?
Lyndal: Well, it depends on what the delay is. I think you can afford to get a second opinion provided that’s a quick one within a week or two. Obviously you don’t want to be delaying months. But, you know, I think it’s well worth getting a second opinion if you are unsure or under-confident. I would encourage people to get at least two opinions.
Lyndal: Well, I think, you know, it’s important for people to feel as sure as possible with the decision they’re making. And even though at the time it can seem overwhelming, I think it’s good to get more than one perspective. And of course, you know, even to do your own reading as you suggested.
Julie: You know, you’re clearly telling us a second opinion is a good idea, but what if you’re anxious that your doctor will be offended? And it will somehow impact negatively on your working relationship with them, should you decide to go with them?
Lyndal: Look, I think we live in a different world these days than we used to and, look, we have a patient charter, patient rights, everybody has the right to a second opinion, and people don’t mind that. Doctors shouldn’t mind that. So be brave and speak up, try and make sure that you ask about that if you feel that you need to. You may actually be very happy and satisfied that the person that’s treating you is part of the team and that’s the way you want to go, that’s fine. But if you do have any doubts, and you want to get a second opinion, don’t be frightened to speak up. It’s your life and your body, so you know, nobody will mind if you do that.
Julie: When Suzanne was diagnosed with breast cancer, she decided to get a second opinion.
Suzanne: The first doctor that I saw, which is why I often tell people to get more than one opinion, because it’s quite a process that you go through and it’s a very drawn-out process and you really want to like who you’re working with. So the first doctor that I saw, she was very matter of fact and very blunt and it was a real shock. Then the next day, I had been, it had been suggested to me by another friend that had been through it, to go and see the doctor she saw. So, for a second opinion, not that I was expecting a different answer, but just to see if maybe there was a better connection. From the get-go he was great. Probably a little better at explaining what was going on and what the prognosis was and what the outcomes were likely to be. I felt very… in good hands, very well looked after. So the process started from there.
Julie: So, Lyndal, what are the practical steps? How do you get a second opinion?
Lyndal: Oh, look, this is where I would say go back to your GP and they’re your champion, they know you. And just say to them, “Look, that guy you sent me to. Eh, well, I’m not convinced. Is there somebody else I can go and see?” The other thing, of course, you know, ask around. Ask as much as you can. If you have family and friends who are in the know, medical, other patients … you know, helplines. Whatever you feel comfortable doing. Some people feel they’ve got an information overload and they’ve had enough. But if you’re wanting to pursue it, go for it. You know, really, really ask as many people, just talk to them about it as much as you want to.
Julie: Yes, and another option if you’re unsure about your next steps might be to call Cancer Council 13 11 20. They can be really helpful, especially if you’re not quite sure how to navigate the health care system. But, Lyndal, is it acceptable to ask the doctor who’s arranged your first diagnostic tests to pass on those results to the second doctor? Or do you have to go through all those tests again?
Lyndal: Oh, no, you shouldn’t have to go through the tests again. It is quite reasonable for those results to be shared, for scans to be sent across. Actually, a lot of the time, you know, patients do have copies of these and, you know, cancer patients walking around with this big plastic bag of x-rays and test results and folders of paper. [laughs] So often we have copies and it’s okay to ask for copies of things, and if there’s something that you don’t have a copy of then that can be sent through.
Julie: The internet can be a wild and worrying place. Do you think it’s best to stick to recommended sites by Cancer Australia or Cancer Council?
Lyndal: Yeah, really they are independent and sort of scientifically based websites. You can trust that the Cancer Council, you can trust Cancer Australia, you can trust the Cancer Institute NSW. They’re all very trustworthy websites.
Julie: And I guess your general practitioner is there to accompany you on this journey, aren’t they? And asking your GP about sites might be useful as well?
Lyndal: Yeah, definitely. And a lot of people we know come back to their GP to actually clarify that second opinion issue and just double-check that what they’ve been told is the right thing. Now your GP’s not necessarily, you know, a multidisciplinary team all in themselves, but they are your advocate and they do know you and your family, often, and they have your interests at heart.
Julie: And they may help you with questions to ask as well. And how do you know you’re seeing the best specialist for your type of cancer? How can you check that out?
Lyndal: Well, I would recommend people look at the Canrefer website. Now that’s another Cancer Institute resource. And they have a database of all the multidisciplinary teams in NSW, and you can type in your cancer type and your postcode and they will give you a list of all the breast specialists near you who are part of a multidisciplinary team.
Julie: So that’s a key one we should look out for, that we want to be part of a multidisciplinary team …
Lyndal: That’s right.
Julie: And part of a specialist cancer centre, if we can?
Lyndal: Yes, look, I think that’s ideal. Particularly if you have some of the more technically challenging cancers for surgery.
Julie: For example?
Lyndal: So, we know that if you have gastric cancer or if you have pancreatic cancer, those operations are technically quite tricky. So, you don’t want a surgeon who only does that operation once in a blue moon, you know, you want to go to a specialist centre. NSW State will allow you to do that, even out of area, because they know that the outcomes are better.
Julie: So one of the common questions may be, “How often do you do this procedure?” so that you get a sense of how much experience your surgeon has. Someone might be listening to this and they live in rural or remote Australia or a regional centre and they might be wondering, what if there isn’t a nearby multidisciplinary team or specialist cancer centre? You know, should I travel to a city?
Lyndal: Well, you don’t necessarily have to. All over Australia there are opportunities for telehealth. There’s some fantastic programs where Indigenous cancer sufferers are able to stay with their community, with their family and loved ones, and talk to the specialist in the major city through a Skype or a video link.
Julie: And do you do that with your GP?
Lyndal: Usually with a GP or a nominated shared-care provider at your local town.
Julie: Okay, so, you can access at least information and advice from wherever you are − but when do you think it is worth travelling to the city for treatment? ‘Cause that’s not uncommon in Australia, is it?
Lyndal: Some people will be recommended to do that. I think the rarer cancers, the more technically difficult surgeries − most of the time your GP should be referring you through to a major cancer centre. But, you know, there’s a lot of the common cancers, if you have a regional centre which offers radiotherapy and you have early prostate cancer, you can use that service. You don’t have to all go to the big capital cities.
Julie: You’re listening to The Thing About Cancer, a podcast from Cancer Council NSW. I’m Julie McCrossin and I’m talking to GP Lyndal Trevena about what to consider when making decisions about your cancer treatment. If you’ve got any questions about this topic, or just want to talk to someone about your concerns, you can call Cancer Council 13 11 20. For links to more information or any of the services we mention, or to listen to more podcasts, visit cancercouncil.com.au/podcasts.
Julie: Let’s turn to the question of side effects. Because sometimes people can feel quite well at the time of diagnosis, but the treatment itself can make them unwell. How do you decide if difficult side effects are worth it?
Lyndal: Well, it’s a bit like facing some sort of gamble. [laughs] You don’t know what’s going to happen to you. You might get it, you might not. And that’s the tough thing for people facing the decision. I think if you have good information that can certainly help, so you’ll know what to expect. And if you do get those side effects then you’re not worrying. And I think everybody is different in what they can tolerate and what they’re prepared to put up with.
Julie: So ask questions about what the side effects are likely to be in the short, medium and long term so you’re informed?
Lyndal: Exactly, and again your GP can help you with managing and, you know, getting those under control.
Julie: I think people speaking up too and asking for help is an important message because some people are nervous about taking opioids, for example, medications to deal with pain. They worry about addiction. What would you say if a patient of yours had that concern and was facing some rigorous treatment?
Lyndal: Well, we know that having good pain control is the first step to healing. Your body will heal better if your pain is under control. And, you know, if you’re taking recommended doses for pain in the short term, there’s a very low chance of becoming addicted. It’s more important that you focus on healing and supporting your body to heal from the cancer.
Julie: Is it useful to ask the aim of treatment and also what would happen if you didn’t have it?
Lyndal: Well, I think that most times these days people will be told whether their treatment is really likely to cure the cancer or whether it’s something for supportive and palliative care approaches. They’re two very different sorts of decisions. So if you were actually going for cure, a lot of the time people will be prepared to put up with more side effects and difficulty in the interim for a longer-term gain. That’s very different than if you’re looking at shorter-term gain with the same side effects.
Julie: Just while we’re talking about side effects − give us an idea of the sort of help that’s available to manage side effects. And I suppose we should also mention that many advances in cancer treatment are going forward at the rate of knots and so what side effects were caused by a treatment even a year ago or two years ago may not be the case now.
Lyndal: Yeah, well we’ve got new and really fantastic anti-nausea drugs, for instance. And, you know, they’re available. So the nausea is not the issue it was 20 years ago, nausea and vomiting. Even with hair loss, you know, there are some new techniques with cold on the scalp that can reduce or minimise the hair loss. I think one of the things cancer treatment does is makes people very tired and we know that exercise is actually incredibly effective at reducing fatigue. So walking, swimming, whatever suits you. So these are all things you can do and we’re knowing more and more and more about how we can reduce these side effects.
Julie: You know, this is all about weighing up your options when you’ve been given a cancer diagnosis. Sometimes there are potentially long-term issues to do with fertility, for example. So is it important to ask for long-term potential side effects and build that into your planning right from the start?
Lyndal: Yes, that’s really important. Particularly the fertility one if you’re younger and still wanting to have a family, have a baby, get pregnant − that is actually a really important one because if you have that conversation early, you can sometimes organise to have some eggs harvested so that, you know, you can have IVF down the track, and there are plenty of women out there who’ve done that and it makes a real difference.
Julie: And for men?
Lyndal: Yes, yes, sperm storage is an option. Definitely.
Julie: What if you do understand what’s being offered and you just don’t like the idea? You’re not satisfied. What do you do then?
Lyndal: Well of course, that’s your right and your choice, but you need to be really sure that you understand what’s being offered. I think sometimes people … I would hate to think that something had been dismissed just because there was a lack of understanding or people weren’t properly informed. I mean, if you make an informed choice to dismiss an option, that’s entirely your right. But if you dismiss something and you’re still a little bit ignorant about what you’re dismissing … you don’t want to live to regret that. And I think regret after making decisions around cancer is something that a lot of people struggle with.
Julie: As someone who’s had cancer, I sometimes wished I’d studied maths and probability at university because you’re given so many numbers and statistics and likelihoods as you weigh up whether you should pursue certain courses of treatment. Do you think it’s important to ask for your prognosis? What does prognosis mean and should you ask the viewpoint, the assessment, of your clinical team?
Lyndal: So prognosis is a bit of medical jargon but what it really means is, sort of, your likelihood of surviving or what’s likely to happen to you into the future. So, you know, will you be cured, will you be cancer free in five years’ time, ten years’ time? What side effects might you have longer term? Short term, longer term. That’s the prognosis … I think it is really important to find out, it’s crucial to your decision-making. But, ah, it’s often one of the most difficult questions for patients to ask because on the one hand you want to know, but on the other hand you don’t want to know in case it’s bad news. But at some point I think it’s really good to face up to it. This is where the question prompt lists can be helpful. A lot of them will provide you with wording that will help you to have the courage to, to speak up when you’re with your specialist. They have a lot of questions specifically about prognosis because we know it’s one of the most difficult things to ask about.
Julie: Of course as with everything, it is a personal decision whether you find out your prognosis, and some people may prefer not to know and that’s your choice. There are psychologists in these multidisciplinary teams, I used one myself. If you want to talk through any distress you feel, ask for a psychologist. Although, sometimes, there might be a nurse or someone else that you feel you’ve got a rapport with and a quick chat with them might be useful. And you can always call Cancer Council 13 11 20. But, Lyndal, basically you’re saying that it’s generally a good idea to find out the prognosis to help you guide your decision-making.
Lyndal: That’s right. And it’s more likely to be good news than bad news, so remember that.
Julie: Another challenge many people with a diagnosis experience is the family member or friend who’s done an internet search and discovered some form of miracle cure that’s outside the normal range of things offered by a multidisciplinary team. Again, your thoughts there, how do you manage that when you’re so anxious for your own recovery, someone’s advocating something outside of the norm?
Lyndal: Well, it’s really important to discuss any other treatments with your treating cancer team and your GP.
Lyndal: Because some of them can interact and interfere with your cancer treatment and, you know, you could unwittingly do quite a lot of harm to yourself. One of the question prompt lists that I was talking about before is actually questions about complementary therapies that you can ask your cancer doctor … and you know, that could be a good resource for people to look at, just give you an idea of the sort of things to ask yourself and ask others about before you launch into something.
Julie: You know, we often talk about alternative therapies, complementary therapies, you know, out of the mainstream. But how do you know if a treatment is out of the mainstream? How do you find out what’s “kosher” and what’s more problematic potentially?
Lyndal: Well, I think again it’s important that you talk to your doctor about these things. If you’re not comfortable doing that and you want to do your own research, I would be looking at the Cancer Institute, Cancer Australia, Cancer Council NSW websites. If things are not listed on these well-known, well-researched cancer resources, you should be a little bit suspicious.
Julie: This is a situation in which trust in evidence-based medicine is a good idea. Isn’t it as simple as that? That cancer’s not something you mess around with?
Lyndal: Well, that’s right. You know, it’s a serious illness and there has been a lot of research into cancer treatments. And I think it’s important to trust the source of the information but also the advice that you’re getting from your health care professionals.
Julie: And Cancer Council also has a booklet called “Understanding Complementary Therapies” so people might be interested in that. Of course, there is growing evidence that some complementary therapies can be useful, in both recovery and prevention. Isn’t that right?
Lyndal: Oh, that’s right and in symptom management as well … Ginger tea is very good for nausea and if you like ginger tea then there’s no harm done in drinking that … Acupuncture, massage and a lot of these sorts of therapies are available in the integrated cancer centres in conjunction with your treating cancer team. So you can access the complementary therapies that we know are evidence-based with some assurance that you’re doing something additional if you want to, but you’re not going to be compromising your treatment. People need to be very careful that if they are going to try alternative therapies, that they do tell their doctor about it.
Julie: You know, some other factors can influence decision-making like money, for example. You know, that can be an issue can’t it?
Lyndal: It can be. We’re very lucky in Australia though that we have, you know, a health system that provides free cancer care to people. So, and I think all of our most famous and, you know, fantastic cancer centres are government-run or at the very least not-for-profit. So, you know, I think we’re in a pretty good situation to see that most people will be able to get the care that they need in a high quality centre without having to worry about the costs. And that’s very different from other parts of the world.
Julie: And yet some new treatments may not be subsidised yet, and yet a person may be interested in at least knowing about them and deciding whether to expend personal funds in pursuing them. Some targeted therapies, immunotherapy, robotic surgery. What is your advice to patients who are looking to find out all their options?
Lyndal: Yeah, well I think that’s an interesting one because just because something’s a new treatment doesn’t necessarily mean it’s better. And we tend to sort of hear hype in the media, and people love a good news story that there might be a new treatment for cancer, but you need to look very carefully at whether they’ve been properly tested and what are the side effects and downsides of those before rushing into thinking, well, just because it’s new, it must be better.
Julie: Now, throughout this conversation I’ve spoken to you as an expert and a general practitioner and a teacher of general practitioners, but you’re also a cancer survivor yourself?
Lyndal: Yes, I am.
Julie: And so do you mind just telling us maybe two or three things you learnt as a patient that added to your knowledge and understanding?
Lyndal: Yeah, well the irony is that I teach shared decision-making and I research shared decision-making, and I found myself in the situation of having to make a decision myself about cancer treatment options. And I think what I learnt was how important it is to have good communication skills, that your clinician has good communication skills. I got two opinions, one was, you know, communicated very well, the options were communicated well. The other was really pretty abysmal. And I walked out of there thinking, “Oh, wow, if I hadn’t been a well-informed, highly educated health professional myself, I could’ve ended up making some pretty bad decisions, from my perspective.”
Julie: So you’re saying that the capacity of your clinical team, or particularly the medical leaders, to be able to talk to you is crucial. What if you’ve got someone who’s not a great communicator but they’re a great diagnostician or they’re a great surgeon?
Lyndal: Well this is where I think what we were talking about earlier, making sure that you check a range of resources. That you look things up for yourself … Yes, they might be a great technician but double-check. Get that second opinion. Check with your GP. Talk to the other − if they’re on a multidisciplinary team, you can be confident that, you know, a range of health professionals have looked at your case. So these are some of the things that can reassure you if you come away from a bad communicator thinking, “Oh, I have a few doubts.”
Julie: Because cancer’s a team sport, that’s what I’ve learnt.
Lyndal: It’s definitely a team sport, and don’t forget your family because they’re there with you the whole time, hopefully − the people that love you or loved ones from wherever they are around the world and that will really carry you through.
Julie: That’s it for this episode of The Thing About Cancer. Thanks to Lyndal, Georgie and Suzanne for sharing their knowledge and insights. 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 iTunes or on our website. If you’d like to subscribe to the show, you can do it in Apple Podcasts or your favourite podcasting app.
Julie: If you found this episode useful, you might be interested in our podcast on new cancer treatments. We talk to Dr Steven Kao, a medical oncologist from the Chris O’Brien Lifehouse, about the role of targeted therapy and immunotherapy in treating cancer.
Steven: Our immune system is designed to detect anything that shouldn’t be there − so whether infection, a bug or a cancer cell that shouldn’t be there, they basically should be recognising them and killing them. And somehow the cancer cells have become very smart, they evade the surveillance from the immune system and that’s how they keep growing. And so immunotherapy is a way to try and boost our immune system up so that they can start seeing those horrible little cells, so that they can kill them.
Julie: Look for that episode, “New Cancer Treatments: Immunotherapy and Targeted Therapy”, on our website at cancercouncil.com.au/podcasts.
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 Cancer − a podcast from Cancer Council NSW, produced by Jenni Bruce and Miles Martignoni.