Right now we have a really special guest. His name is Michael Jefford, and Michael is not only an expert in oncology, but he’s also a passionate advocate for cancer survivors! In this episode, Michael shares some truly inspirational words of wisdom on how you can take control of your life during treatment, and what to do with this whole uncertainty and stress around cancer really gets to you. Michael also has some tremendous insights on how you can deal with the challenges that come with rebuilding your life after cancer:
- On dealing with fear of cancer coming back
- Understanding your preferences about decision making
- Trusting your specialist
- How hope sends people on the search for alternatives
- Building a better life after cancer
- Tougher journeys for different groups through cancer
- Powerful tools to help during a consultation with your specialist
- Understanding palliative care
- The importance of general practitioner during cancer
- and much, much more!
Joe: Michael, I know from experience that this fear of cancer coming back is very real, like it gets hold of you and much more after recurrence, if you get that. What can be done with it to deal with it in a better way, both in a healthcare perspective, as well as from a perspective from a person who needs to deal with it right now?
Michael: Yes. We know that the worry about cancer coming back or cancer growing or spreading is very common. We know from a lot of work that’s been done in Australia and internationally, that Australia is really leading in this area, that the worry about cancer coming back is very common and it can last a long time. People talk about learning strategies to deal with this. There can be a number of different things. For some people, it’s about acknowledging anxiety or distress and being able to recognise that and to have strategies to deal with it. For some people, it’s useful to understand what their risk of recurrence might be and to put that into some perspective.
For some people, the risk of recurrence might be quite low and that can be comforting. We know, too, that for some people, being able to do all that they can to manage the risk of recurrence is useful. Strategies like being as well as you can be, maintaining, exercising, healthy diet, participating in regular surveillance, where it’s recommend and evidence-based. Also, I think talking to people about how you feel and recognising the stress that comes with having had cancer and follow-up and the like. Sometimes that’s useful to talk to other people who have been in a similar experience.
Perhaps for some people being connected to a support group or something like cancer connect, that the cancer counsel runs. For some people, it’s useful to have the opportunity to talk to a professional. That might be a counselor or psychologist or somebody else like that.
Joe: Yes, that’s so true, Michael, because sometimes you really need someone with an outside perspective, someone who isn’t involved with you to listen to you and to perhaps give you advice, right?
Michael: Yes, I agree. I think a lot of people, friends and family could be well-meaning, but potentially might not recognise the concerns that people have. To have an attitude of: It’s being you, you’ll be fine, may not actually help people who are really worried about the possibility of cancer coming back. Having the opportunity to talk to other people who either might have been in a similar experience, so a peer or a professional can be useful. We know that there are a number of interventions that have been studied in very rigorous scientific research that have been shown to be effective in helping people to minimize or reduce that concern about cancer coming back.
Joe: Yes, that is so true. I know you touched on having some information around the facts. I know that one of the things that really helped me was immersing myself in cancer, like becoming an expert in my own illness, so to speak. It gave me a confidence in the treatment and the side-effects and understanding the chances of it coming back. It also made me ask informed questions, as well. Is this a good approach? Is this something you would recommend to others?
Michael: Yes, I think that everybody’s different. Certainly, in my own experience, you come across people who have very different styles and needs for information. There are people who say, “Look, I want all of the information” and they come along, and they’ve researched their illness and treatments and know as much as the healthcare team. There are other people who say, “Look, I trust you, I want you to give me the best advice.” Everyone’s a bit different. I think that there are people who, I might provide written information and some people will say, “That’s great, I really want that.” Other people will say, “I don’t want to read it.” It’s handy to have at home in case they want some good evidence-based information.
I don’t’ force a particular my own preference or my own belief on anybody, but I guess recognise that everybody has different information needs and different styles. One of the things that I often talk about is that, for example, I go to see my accountant and I probably shouldn’t confess this, but I don’t know a lot about accountancy and tax, but I put my faith and trust in my accountant with the belief that he’s going to do the right thing by me. I think that everyone is going to be different and we need to be able to fit in with people’s information and information preferences and their own preferences about decision-making.
Joe: I know you just mentioned how people have different preferences, with respect to information. Did you notice any patterns with regards to, for example, men and women having different preferences or maybe people of different ages? What’s your take on that?
Michael: I think it’s pretty hard to generalise, so there’s probably a trend that younger people probably want to be more involved and often want to have more information. I guess that we’ve come from a situation of let’s say 50 years ago, where it was more of a: Doctor knows best kind of a belief. There’s less of that now. At the same time, there are many people who almost feel burdened if you say, “Do you want chemotherapy A or chemotherapy B?” Some people will say, “I don’t know, you tell me.”
Almost feel that it’s burdensome to be asked to make that decision. I guess that we have to recognise that everyone’s different and we can’t assume that just because someone’s older or younger, that they’re going to have a particular preference for information or preference for decision-making. I think the easiest thing is just to ask.
Joe: Yes, absolutely. I know when, for example, I was deciding between my treatments, I could go either the radiation or chemotherapy. In the end, what really decided for me was the person on the other end, because I spoke to a radiation oncologist and a medical oncologist and really, without even talking about side-effects, different side-effects and treatment, my medical oncologist gave me all this confidence that things will be taken care of. If any problems should arise, we can work around it. It was ultimately having the person on the other end that you put your trust into.
Michael: Yes, look, I think that being in a situation where you trust the person that you’re working with is really important. I think that’s true when I go to see my accountant. I trust the accountant. I think that’s really important in having a relationship with any professional, indeed with anyone, but you really want to find somebody that you can work with, who you trust and you’re going to be able to have that sustained relationship with.
Joe: Absolutely. Michael, I know that there are many alternative treatments that really have no evidence for treating cancer that can give false hope and take people off-track. Can you talk about what some of these supposed treatments are?
Michael: Yes. I think that you’re right. I think that there are plenty of treatments that are recommended or that are promoted that may not be evidence-based. There may actually be no information to support their use. Some of these treatments that have been suggested as cancer treatments have been studied and have either been shown to have been not effective or toxic or both. Many of them just simply haven’t been studied. I guess we don’t know for many of the treatments.
I guess that what we’d recommend is that people need to get information, try to find out whether there is data that supports this, and talk to people, talk to their family, talk to their GP, talk to their oncologists. If there’s something that’s being suggested, then talk with people about that and try to get the information and be confident that they’re going down the right path.
Joe: Absolutely. Where do you think that stuff comes from? Is it from conspiracy theories or is it some hopeful and magic cure? What is it?
Michael: I think that a lot of circumstances we don’t have treatments that are good enough. Many illnesses, particularly if cancer spread to somewhere else, in many circumstances the standard treatments that we have are unlikely to lead to cure. For many people, that’s devastating, they want to find something that’s going to give them a better chance. I think that most people are looking for other options with the hope of a better outcome. That better outcome might be a better chance of cure or longer survival, fewer side-effects, those kinds of things. I think that people have very legitimate reasons for looking for other options. Unfortunately, sometimes I think people are misled and I think that there are people out there who are making money because people are desperate and they’re looking for something more than what can be offered by standard medicine.
Joe: Yes, absolutely. How do you know if this supposed treatment if it’s a myth or if it’s reality?
Michael: I think that, again, it’s probably trying to get information yourself, but also talking to people and looking for other sources of evidence. The Cancer Council has an information service, so 131120, and people can call that service and speak to a cancer nurse and talk to them about treatment options. They might say, “Look, I’ve been given some information about this type of chemotherapy or this putting a magnet on your head or something.” The nurses on the cancer helpline will be able to look up that information and they’ll be able to talk to somebody about the source of treatments that are being suggested.
I have patients who will bring in information and sometimes I’ll be able to talk about that straight away. Sometimes I’ll say, “I haven’t heard about that, can you let me look that up and then next time we catch up, we can talk some more about it.” I think it’s really important that people talk to their health practitioners but get information and feel confident that the treatment that they’re going to embark on is evidence-based.
Joe: Yes, I think you brought up a fantastic point, that nurses are so underrated when we talk about cancer treatment. I’ve heard so much fantastic advice from nurses, from oncology nurses over the phone, in-hospital, that I can’t say enough good things about thing.
Michael: I agree. The nurses often sometimes have more time and can often help people with understanding the information they’ve been given, help people make a decision that sits with them, help people with a broad range of issues that might be health-related, it might be emotional, it might be social, it might be practical. Those nurses might be in the hospital or the clinic, but they might also be in the community. I guess that’s having a good team around you, which are your specialists, people in the hospital or the clinic, but also a GP, potentially a practice nurse, and then it’s about having other supports, as well, which might be through the cancer counsel, through a support group, friends, family, all of that. A network of people around you.
Joe: Yes, you’re exactly right. It’s so important to have your supporters around you. Your family, like you mentioned, your friends, and specialists. If you flip out conversation to talk about complementary therapies. What are some of the approaches that can help someone deal with cancer or having a better life after cancer?
Michael: As we were just discussing, making sure that you have support is an important component of getting through cancer treatment and life after treatment. I think that supports are really important. That could be through family and friends, but it could also be through support services. There might be a support group, it might be an online forum, it might be a telephone-based support. That’s important. In terms of what else you can do to be well and get through treatment, it’s probably not a surprise, but exercise is really important. There’s growing evidence that exercise helps people get through treatment, and probably reduces the chance of cancer coming back, but has broad benefits. It helps people with mood, with sleep, with coping with treatment.
Exercise is important. It’s not always easy to incorporate exercise but we know that some is better than none and more is better than less. Also, on that, a lot of hospitals don’t have a lot of exercise programs, but GPs can link you in with exercise programs through referral to an exercise physiologist or through a physiotherapist that’s Medicare reimbursed. Then there are also exercise programs that are run by the, for example, Cancer Council. They have a program called: Healthy Living After Cancer that you can, again, call: 131120. I don’t work for the cancer counsel, but I do recommend them. That’s a program that people can access at no charge. Also, thinking about diet and alcohol, that will help people get through treatment.
Minimizing alcohol, we know that alcohol can actually increase the risk of cancer coming back for some types of cancer types, including breast cancer. It’s important to be aware of alcohol consumption. Then there are other strategies that some people would call complementary, so Tai-chi and Chi-gong, we know can actually help with wellbeing and relaxation. They are also strategies that we would consider to be very complementary that side aside standard therapies.
Joe: Yes, that’s fantastic, Michael. I should look into that. Michael, if you’re gay or lesbian or transgender, you might really have special needs. You might even have to deal with some prejudice when it comes to dealing with cancer. What would you say to someone who’s having to deal with it right now? What should you expect and where should you turn to if things aren’t going to plan?
Michael: Yes, I think you’re right. I think there are a number of groups that probably feel that it’s a more difficult journey for one reason or another, it might be LGBT communities, it might be migrants, it might be aboriginal people. A number of different groups that probably have a tougher journey. I think that can be a part of a problem with having health professionals who don’t necessarily sit comfortably with different groups. We know that there’s probably, to an extent, people perceive that there’s either more of a hetero-centric attitude or even homophobic attitude sometimes in health.
Sometimes it’s hard for people know are gay or lesbian, transgendered people in the healthcare setting. It might be important to therefore go and look for additional support services. Of which there are services. I know that BCNA, the Breast Cancer Network of Australia and PCFA, the Prostate Cancer Foundation of Australia, both have good links to information and support services. Now, that’s not just for people who have breast cancer or prostate cancer. If you had listeners who are gay or lesbian or who have partners or friends who needed extra information, then I’d suggest going to those websites, because they do list services that are not specific to particular cancer types.
Again, the cancer counsel has resources, too, so sometimes it’s tough but to have that additional information and support and link to people who have been through similar circumstance could be useful.
Joe: You make a great point, Michael, because there are a lot of things that those support services focused around breast cancer and prostate cancer, because they’re more prevalent, but a lot of those needs, like you mentioned, around it is universal. If people can cancer, they should go into and look up some of these services.
Michael: Absolutely. Breast cancer and prostate cancer aren’t the only cancers that people have. They’re certainly not the only cancers that gay and lesbian people have. If you have bowel cancer or if you have any other cancer type, it’s still worth contacting those sorts of resources, because most of these support groups aren’t cancer specific and many of the issues, if you’re a gay man or a lesbian woman, many of the issues that you might experience would be shared regardless of whether the type of cancer that you might have. I think that support would still be useful regardless of the cancer type.
Joe: Yes, exactly. You touched on other underprivileged groups, like, for example, migrants who might not be heard because they might not have the language skills or maybe the cultural integration to speak up. Folks like that can really fall through the cracks when it comes to healthcare. That may make them feel misunderstood. What can we do to make that better?
Michael: There’s the Australian research that shows that migrants to Australia that do have cancer do have worse outcomes. They often report poorer quality of life and more anxiety, depression, etc. Some of the recommendations from that work were that many people feel more comfortable with practitioners that speak their own language. I think it’s useful to seek out people who speak their own language and understand their own culture, that might be useful. There’s always the opportunity to use an interpreter, and I think that that’s important. It’s better that we don’t have family members who have to act as interpreters. Sometimes family members who might be well-meaning, might withhold some information from people, which isn’t always ideal.
I think using an interpreter is a good strategy. The cancer counsel does have a growing amount of information that’s available in other languages. At the Survivorship Centre here at Peter Mac, we’ve developed information for people who have completed initial treatment for cancer in many different languages, which is being promoted through the cancer counsel nationwide. I think that there are some strategies, we talked earlier about a telephone information service that’s run by Cancer Council at: 131120, but you can access that with an interpreter.
That’s another avenue, as well. At Peter Mac, we’re doing some work on audio recording consultations. That can be useful, too, for people to have that consultation audio recorded with an interpreter. Then it can be useful to go back and listen to that. I guess we do need to think about what additional strategies we can do, so that people don’t fall through the gaps, like you said.
Joe: Yes, exactly. I think that recording the conversation would actually be fantastic, even from the perspective who don’t have a language barrier. I know from personal experience and some research that I’ve read about, as well, that when people go through a cancer diagnosis, their first meeting, you’re just in a fog. You walk out of the first appointment with an oncologist or a urologist and you remember nothing about what happened. It would be really good to refer back to something that you can listen to and go, “Yes, so that’s what we were talking about.”
Michael: Yes. There is actually good evidence that using audio recordings and also question prompt lists can help people to – question prompt lists are really just a list of questions that you might like to ask. We’ve developed some questions prompt lists here, including for cancer survivors, so a list of questions that you might like to ask your health professional. That can help be a note and be an aid when you go to a consultation, to go: Yes, I actually do want to ask these questions here. That can help with questions asking and that you can ask the questions that might be difficult to raise. That it might be about: I want to talk about the cost of treatment, or I want to talk about the impact on relationships or sexuality. Some things that aren’t always asked in a consultation.
That can be a useful way of helping people when they’re going to a consultation. There’s also good evidence that recording a consultation helps people, too. It’s an aid. It means that they get a lot more out of the consultation. Like you said, you go to a consultation and you’re stunned by bad news and then you just don’t hear anything more. That’s why taking notes, having a friend there, having an audio recording can help. We’ve known for a while that these sorts of things help, it’s about trying to make sure that they get implemented. Colleagues at Peter Mac have an app that’s called: Second Ears. Which will allow people to record the consultation on their phone, but also so that we get a copy that we can keep in the record, as well.
Joe: I love it. It wasn’t around for me. Michael, that’s fantastic. When it comes to, you mentioned, having those pre-prepared questions, I think that sounds like a fantastic resource. Where would you go to get those questions? Also, who would you take those questions to? Is it a medical specialist? Is it a general practitioner? What are some of the questions that are you should ask?
Michael: That’s a big question. It depends on that person’s individual circumstance. If you’re newly diagnosed versus you’re finishing treatment, versus another setting, then you might have a different set of questions.
Joe: Let’s say you’ve finished treatment, you had an all-clear, and you’re just going to deal with check-ups and you want to improve your life going forward?
Michael: Yes, so this question prompt list, we have a question prompt list on the Australian Cancer Survivorship website: www.petermac.org/cancersurvivorship. There are a list of questions there. Some of those question might be about, tell me about what kind of follow-up I might expect, or tell me what’s the purpose of the follow-up? It might be a question you might want to ask about what sort of signs and symptoms should I look out for? It might be about, well, what are the sorts of things that I can do to be as well as I can be, or to minimize the chance of the cancer coming back? Some people might like to ask about: Are there effects that might happen to me down the track?
We talk about late and long-term effects. People might be curious about that, but they might also want to know: Are my family members at risk of cancer, or it might be about how do I get support, or can you recommend websites? Everybody’s going to have a different set of questions. Some people might feel more comfortable asking their cancer nurse some of the questions or their GP or their specialist. I always say, if you’ve got questions, ask everybody until you get the answer. The GP might say, “I don’t know what your risk of long-term effects are. Chat to your oncologist.” You oncologist, you might say, well, put me in touch with a psychologist in my local area, they mightn’t know, but the GP might. I think it’s important to have the questions and then see who you think might be the right person to ask them.
If you’ve had a good relationship with the cancer nurse and the cancer nurse is great at putting you in touch with support services, you might say, “Well, I’m going to go and ask my cancer nurse about additional support now, because they might know.” I think it’s important to have those questions, write them down because it’s always difficult when you go to the consultation, you’re going, “I know I had a question and I can’t remember what it is.” Write it down. The other thing is, if you’ve got questions, the cancer helpline can be useful, but other websites. If you don’t feel like you’re getting the answers, then take it to your healthcare team.
Joe: That makes so much sense, Michael. I think that using every available tool at your disposal works. Right?
Michael: Absolutely. Sometimes it can be overwhelming. I think that being able to go to someone who you trust and say, “I’m a bit overwhelmed, I keep reading all of this information, just give me the facts. Where is something that I can look at that is going to be short and concise and evidence-based.” There’s so much stuff out there, you don’t want to be overwhelmed.
Joe: Absolutely. Michael, there was a time when I was in hospital and I was getting chemo, next to me, there was this man and I heard the doctor talk to him about palliative care. The man was just freaking out, he was saying, no, I don’t want to go, they’re sending me to die. I kept hearing about it for hours. Is that a general perception of palliative care, do you think?
Michael: I think it’s a common perception. I think that many people associate palliative care with end of life. I guess that we think that palliative care is much more than that. Palliative care is more about making people as well as they can be for as long as possible and looking after physical symptoms but emotional, psychological, spiritual health, but also seeing that person in the context of a family, or an extended group. Often, palliative care is about trying to help everybody and to try and keep people as well and healthy for as long as possible. We think that palliative care sits alongside active treatment, and often it’s good to engage palliative care at an early state when they can help with the whole person and the whole family issues and family needs.
Although, palliative care might have particular assistance for people towards the end of life, palliative care, the whole team, that’s doctors, nurses, allied health etc, can be valuable for a much longer period of time. Palliative care might come in, so we might have somebody with difficult symptom issues, and we might ask palliative care to be involved. Then they might be involved for a period of time and then not be involved. They might be involved a year or two later. Palliative care can come in and out.
Joe: You touched on spirituality and when it comes to, for example, cancer survivors, people who have beaten cancer and quite often have a complete shift in priorities and the way they look at life, what do you think is the role of spirituality and other psychological approaches to looking to the future and have a better perspective?
Michael: Yes, that’s a big question. I think that what you’re touching on partly is that cancer is a life changing experience. It’s not all over when it’s over and many people see life differently. Often, people think about meaning and purpose and what’s going to be important for them for the rest of their life. They also find meaning and connection in different ways. I think that for a lot of people it is a time to reflect and also to see what gives them meaning and purpose and value. For some people, religion or faith is important and strengthens them and allows them to be strong and get through life.
That’s not for everybody. Other people, it’s just resetting life and going, “These are the sorts of things that are important, these are the sorts of people who are important, these are the sorts of activities that are important to me. This is who I want to live my life.” That’s, at the same time, survivors talk about an obligation to have an epiphany and an obligation to feel like, “Wow, my life has changed fundamentally.” For some people it is and for other people it’s just like, “Well, I’ll just get back onto life and it’s pretty similar to how it was before.” Life hasn’t changed fundamentally. For some people, it is a shift. I think for most people, there’s a degree of seeing life a little bit differently.
Joe: In terms of cancer survivors, how does the doctor, the general practitioner, how do they stay in the loop with the cancer survivors? I have a great relationship with my GP, but it doesn’t feel like there is a holistic integrated approach out there.
Michael: I think that we probably all recognise we could do a better job of providing a more integrated coordinated healthcare model. We know that for many people, they have a very fragmentated healthcare system. They might be seeing, even when we just think about cancer, they might be seeing a surgeon, they might be seeing a medical oncologist, a radiation oncologist. They might perhaps also be seeing nursing allied health. That’s just their cancer part of their health. If people have other health conditions like diabetes or heart disease or lung disease, then they could be seeing other practitioners.
Then the GP is supposed to bring it all together and see the whole person and coordinate all of this. That’s pretty challenging and I don’t think we necessarily do a good job of that. In the cancer world, people often talk about, and GPs talk about, the GP might make a diagnosis and then they go and see a specialist, they get stuck in the cancer world, and then at some stage, they pop out again and the GP often goes, “I don’t know what happened to you.” I haven’t had good information that can be a problem because often patients and survivors go, “I don’t know if I should be seeing my GP because they don’t seem to know what’s going on.” That’s not the fault of the GP, it’s the fault of the system, and often cancer care, that we don’t do a good job of integrating the GP with the whole person care.
We think that it’s important, though, because often people have other illnesses, often the GPs have had a long-standing relationship with that person. They might have known them for decades. They understand the whole person. It’s really important that we don’t neglect the GP. Now, the tricky thing is, obviously if you’re coming into hospital on a regular basis, it’s extra visits to say, “Well, you should be seeing your GP, as well.” Understandably, many patients would say, “But I’m seeing you. I don’t want to have to see yet more appointments.”
It’s challenging. I think we need to be doing a better job of communication from the point of cancer diagnosis, through the cancer treatment, and beyond. The GP has a really important role in managing other illnesses, in health promotion, in wellness, in trying to help people quit smoking, exercise, eating well, managing the whole person. There’s a way to go in that. I think we’re making progress but there’s still a way to go.
Joe: Fantastic. Thank you so much for sharing your perspective, Michael.
Michael: It’s a pleasure.