Today, I’m super excited to be talking to Ben Smith. Ben is based at the University of New South Wales, in Sydney. He specialises in developing online tools to deal with the mental side of cancer that give you control over the support that you get. Ben also has some fantastic advice on dealing with the fear of cancer coming back, on where you can turn to for professional help, and where cancer caregivers, what can they do to stay sane during this crazy adventure and much, much more. There are so many great actionable takeaways from our conversation today that I promise you you’re going to love it. Here is what we cover:
- Why we don’t ask for help during cancer
- How to get the support you want through online interventions
- Where you can turn to for help (face to face and online)
- How to deal with fear of cancer recurrence
- The importance of a diverse team supporting evidence based outcomes
- Carer’s roller coaster of emotions and where to get help
- and much, much more!
Joe: Ben, when it comes to cancer, like most of us don’t realise that we need help on a psychological level. I know from personal experience that it just doesn’t occur to you to seek help, because it’s cancer, it’s supposed to be hard, you know?
What’s your take on that?
Ben: Well, there’s no doubt that cancer is hard, I can’t take anything away from that. There are definitely ways that it can be made easier. I think people really shouldn’t be afraid to ask for help. As you say, a lot of people don’t necessarily think to do that because they just feel they have to tough out what is an inherently challenging experience. I think, though, in your case, as is typical of a lot of men, they seem to want to be particularly stoic and particularly reluctant to seek help. Certainly, something that I saw in my PhD, which was focused on men with testicular cancer. Although, two thirds of those men reported having unmet needs when it came to support for getting through their cancer experience.
A lot of them were very reluctant to actually go and ask for that help, themselves, or perhaps, yes, it just didn’t occur to them. I think what that highlights is the importance of something that’s becoming increasingly common in management of people affected by cancer these days, which is something called screening for the stress. There are a number of projects happening around the world, and one here in Australia called the Adapt project, where they’re trying to implement routine screening for the stress across the cancer trajectory. They use a very simple tool, a distress thermometer, along with a checklist of items that people may be struggling with. That’s done at various points throughout their treatment and follow-up.
It helps pick out the people who are struggling a bit and what issues they’re struggling with and it helps, I suppose, the caner care team know what issues they can be helping those patients with. As you say, sometimes the people, themselves, don’t realise that clinicians aren’t particularly good at recognising when people need help either. We need ways to routinely being able to identify people who are needing help.
Although, it’s important to acknowledge that not everyone who is distressed as a result of cancer will want help. Actually, there’s been studies that have found that the majority of patients actually decline help. We need to give people space to manage their distress how they want and to make them realise that help is available if they need it.
Joe: That’s so fascinating that you talk about this tool. How does it actually work, is it like a questionnaire and it’s like a self-assessed questionnaire that you fill in, say, in front of your specialist?
Ben: It can be administered in a number of different ways. In some cases, or in some centres, it’s just done online or there might be a touch screen, for example, when they turn up to the waiting room where they can complete it. In some cases, it’s administered by a member of the cancer care team, in other cases, it’s done online, at home. As it’s done in a project called, Prompt Care, that is running here at my centre. There are various ways of doing it. I think my personal opinion is that we need to give patients or people affected by cancer space to honestly report on their levels of distress and the symptoms that their experiencing.
Which is probably best done in the comfort of their own homes. I think a lot of cancer patients are reluctant to bring up issues with their treating team sometimes, because they don’t want to seem ungrateful for what the doctors have done for them, and like they haven’t done a good enough job kind of thing. Everyone with cancer is very appreciative of the care that they get, so they don’t want to do anything to make it seem like they’re not.
I think the really important thing is once, however those questions are asked, the follow-up, there needs to be an action based on those questions on behalf of the care team. Those results need to go to the care team and appropriate actions and referrals need to happen after that.
Joe: Yes, Ben, that sounds like a great tool. Let’s say I’ve used a tool like that to understand that I am struggling with cancer and it’s all a bit too much, so where do I turn? Do I look for a psychologist, a psychiatrist, a counsellor maybe? How do I know they’re going to understand where I’m coming from as a cancer patient or a cancer survivor?
Ben: I think it all depends on how much you’re struggling and your preferences regarding what type of help you’d like and your access to that help. There are a lot of different sources of support, that I suppose range in intensity. A great first-base or first port of call is the cancer information and support line, which is: 13-11-20 helpline, run by a Cancer Council in each state. Then by calling that line which is accessible to anybody if they’re affected by cancer, whether it be someone who’s a patient or survivor or perhaps even someone who’s caring for one of those people, you can speak to specially trained people who are often registered nurses or counsellors to get some specific advice regarding the issues that you’re facing as someone affected by cancer.
That’s obviously accessible to anybody who has a phone, so that’s great. I suppose another person who you can turn to is your GP. I think as a young guy, I didn’t really have a regular GP that I went and saw until a couple of years ago. I think it’s a really good think to have because a good thing about someone like that is a GP who you see regularly knows you, but they also know the healthcare system, so they can help link you in with any support that you need.
For example, if you go and see a GP now, you can get what’s called a mental health care plan, that basically means that you can have several sessions with a psychologist, subsidized by Medicare, which is great. I suppose if you’re looking for cancer specific advice, you can go, and you can speak to your treating oncologist, your cancer centre and ask for a referral to a psychologist, or it might be a psychiatrist, or even a social worker or someone like that, if you’re after more practical help at your treating centre.
The downside to that is that a lot of people who have had cancer don’t like to go back to the – if they’re through their treatment and it was really tough, they don’t necessarily want to go back to where that all happened, which brings back a lot of negative memories. You can look for cancer professionals in the community. There’s a great organisation called: Cancer Counselling Professionals, which enables you to search for people who have got a specific interest or training in counselling people with cancer. You can search by postcode and find out who’s around. You can specify the type of help that you’d like, as well, like, for example, whether you’d like to speak to someone that’s a psychologist or whether you’d prefer to speak to a psychiatrist or you just want a counsellor, you can specify that in your search, as well.
Finally, the last option I suppose is things like online self-management type interventions, where if you don’t feel that you want to speak to a face-to-face professional, and a lot of people do prefer to manage their concerns on their own or just perhaps with the support of their family and friends, then there are a number of websites now, depending on the type of cancer you have or the stage you’re at, where you can seek that kind of help.
Joe: Yes, that’s fantastic advice, Ben. Let’s actually dig into that self-management and self-help part a little bit. What can you do, yourself, as a cancer patient or a cancer survivor or a carer, if you’re caring for someone who has cancer? What can you do and what are some of the good resources to check out?
Ben: Yes, I suppose as cancer, as we continue to develop better ways of diagnosing and treating cancer, there are an increasing number of people living with and beyond cancer for many years. There has been an increased focus on self-management, which is a concept that has been applied to many other chronic diseases in the past. It’s basically about empowering people to manage their own health, who had some kind of illness. There are, again, numerous ways in which this can be facilitated.
There are programs run through the cancer counsel, for example, there’s one called: Living Well After Cancer, which is all about trying to help people re-establish a healthy lifestyle after having cancer. I think that’s a big one that a lot of people focus on, is the diet and exercise type things. It not only is improving your health and doing things like reducing your risk of recurrence, but it’s also a way of getting back some degree of control after an experience where you had very little control.
There’s also just more informational booklets that do include information about self-management strategies, like the Living Well After Cancer booklet also published by Cancer Council. Then there’s online interventions. One that’s been developed for anybody affected by cancer by a group led by Dr. Lisa Beady over at the Flinders Medical Centre, it’s called Finding My Way. That’s been evaluated and shown to be effective in helping people improve their psychological wellbeing after cancer and is now publicly available. That’s something that’s accessible to anybody who’s had cancer. Then there are some more specific websites, a couple that I’ve been involved in developing is one called e-TC for testicular cancer survivors.
Another one I’m currently working on is called: I Conquer Fear, which is specifically focused on helping people manage their concerns about their cancer coming back. Finally, there’s one way of trying to empower people is to have them talk to other people who have been through the same thing. Support groups are really important. Although, not everyone likes that group dynamic, necessarily. If you prefer one-on-one kind of support, there are programs like Cancer Connect, where you can get specific information and advice from another cancer survivor who’s had a similar experience to you.
Joe: Yes, that’s great, Ben. You mentioned e-TC, I love it, it’s such a great tool. Could you talk about what it is and how did it come about?
Ben: Sure. ETC came about from my PhD research, which as I mentioned before, was focused on testicular cancer survivors and identifying what issues they faced and trying to find out who the men were that were struggling the most. What we found in that was that approximately one in five testicular cancer survivors experienced levels of anxiety and depression that were clinically significant. Having an impact on their everyday lives, making it hard for them to function and do the things they wanted to do. That compares to about one in eight in the general population, so an increased prevalence in anxiety and depression. Also, poorer quality of life in several areas.
As I mentioned before, about two thirds of men were reporting unmet supportive care needs but were very reluctant to see a face-to-face and a professional to address those needs. Since testicular cancer tends to affect young men, who are typically very busy with work and starting a family, or just all the things that happen in your life as a person in their 20s or 30s, we thought that reaching out to these guys online would be – given that they were already fairly highly connected in general, would be a good way of offering support. e-TC was developed with some funding from the Cancer Council and an organisation called Sydney Catalyst, in the first instance, led by a colleague of mine, Dr. Louise Henninger.
It’s really targeted at providing men with tools of strategies to help them address some common concerns faced by testicular cancer survivors. Which are dealing with both the physical and psychological side-effects of their illness, such as worrying about their cancer coming back, but also impact on things like their relationships. It can have quite a big impact on sexuality and intimacy. It’s giving them strategies to try and overcome some of those issues, such as learning how to identify and challenge unhelpful thoughts and learning some mindfulness techniques to help them deal with things that they can’t necessarily change, such as the potential risk that their cancer might come back one day. We’ve done a little bit of evaluation of e-TC to date.
We did a pilot study with 25 men who have had testicular cancer. What we found from that study was that they thought e-TC was a really great resource, but there was somewhat limited engagement with e-TC, so men seemed to either complete the whole program or not do very much of it at all. That may have been for practical reasons. One man talked about losing his password and the procedure he had to go through to get it back was just too onerous, so he just didn’t bother. Also, as I mentioned before, men are typically reluctant to engage in psychological type research, as well.
There was a clear need for us to try to increase to level of engagement of the intervention by doing things like providing more videos of survivors talking about their experiences. Also, just making it a bit easier for men to go into the intervention, get the information that they need, and then get out. Men didn’t want to have to work through pages and pages of information and strategies and exercises that weren’t necessarily directly addressing the specific issues that they were struggling with.
We subsequently refined ETC with the support of ANZUP, which is the Australian and New Zealand Urogenital and Prostate Cancer Trials Group. We’re now testing that refined intervention in men who had testicular cancer, who were reporting higher levels of distress, so our target population I suppose. We’re hoping that that evaluation will be completed shortly.
Joe: That’s fantastic, Ben, because you saw a need, the need that men want to address some of those underlying psychological issues, they we may not necessarily feel comfortable about going out and seeking a face-to-face professional. This is really something you can do from the comfort of your own home. I think that’s fantastic. Ben, you also touched on the fear of cancer coming back. You’ve done some work around that. Could you talk about why it happens, what are some of the strategies to deal with it and what is the tool that you’re working on right now?
Ben: Fear of cancer recurrence, or people worrying about their cancer coming back is a really common concern amongst people who have had cancer. Probably the most pressing issue for many cancer survivors. That’s the first thing to acknowledge, that it is a completely normal reaction to have when having had cancer. It’s a rational concern. The reality is that anyone who has had cancer, there’s a small risk that it could either come back or they could get a new cancer. That fact that it is a rational concern has informed how we aim to try to address it. By we, I’ve worked with a team of people, largely from the psycho-oncology cooperative research group, which his based at Sydney Uni to try and address this problem.
The approach that we’ve taken is that it’s not reasonable to expect that you could completely eliminate people’s concerns about their cancer coming back. That it is something that is likely to happen to everybody. What we think drives fear of cancer recurrence, which has an impact or a severe impact on people’s lives is actually their beliefs about the value of worry. Which is called meta cognitions. For example, if you have either positive beliefs about the value of worry, so you think it’s important that you worry so that it will help you catch any potential recurrence earlier, or if you have negative beliefs about the value of worry.
For example, if you think that worrying itself might actually cause your cancer to come back. That can create this way of thinking that is very internally focused. Which is why we think that any aches and pains and things like that can often trigger these thoughts about cancer coming back. It’s also very focused on threat, as well. This causes a cycle, whereby, any trigger can set off the cancer recurrence and then people think, the thoughts about the cancer coming back, and then people say, well, it’s important that I worry or that I try to push that worry away. That actually just increases the worry further. The way that we’ve tried to address fear of cancer recurrence is by doing things that acknowledge that this is a normal issue, but try to change people, the way they think about worry. They’re giving these worries less attention. Not trying to get rid of them, just treat them as noise.
One strategy that we’re using is detached mindfulness, for example. One of the analogies that is used, for instance, is thinking about your thoughts on cancer, like trains at a busy station. All these thoughts and concerns, these are trains that are just going past to destinations that you don’t want to go. Of course, you’re not going to get on, you’re not going to engage with those thoughts, if that train isn’t going to where you want to go. It’s helping people see them as more internal noise that is going to be there to some degree, but they’re turning down the volume so that they’re giving them less attention. That’s the kind of approach we’re taking.
That’s part of an intervention called Conquer Fear, which has been shown to have been very effective in reducing the levels of cancer recurrence experienced by people with cancer. It also includes, I suppose simple strategies from that intervention that people could incorporate into everyday life. Or also things like worry postponement, which is a strategy, whereby, you set aside a bit of time each day, for example, ideally, not too close before you go to bed, where you’re going to worry about stuff. Whether it be your cancer coming back or whatever it is.
It just means that by putting aside as specific time to do it each day, you’re less likely for that worry to be happening every hour while you’re trying to get your work done or whatever. You know that, okay, I’ve got time to think about that late. A lot of people find that by the time they come to that time, they’re like, actually, I don’t think I need to worry about that anymore, or that moments passed. That can be quite an effective strategy to help people. If you are, for anybody who is experiencing worries that are very persistent and not just transitory.
A lot of people talk about their fears about their cancer coming back thing being elevated around the time of follow-up tests or appointments, but if you’re experiencing these fears all the time, and they’re having an impact on your everyday life, then I’d encourage people to go and see a psychologist.
Joe: Wow, Ben, those are some great tools. I love the metaphor about the trains rushing past and how you can just say, well, I don’t want to get on. That’s great. I think that’s really powerful. Is that related to mindfulness? I guess, Ben, mindfulness is one of those things that everyone talks about, but no one really knows how to do. What’s your take on mindfulness? Is there an approach that someone can take to think about it? Are there any good resource that you could recommend? What’s your take on that?
Ben: I’m not an expert on mindfulness, generally, and the kind of brand of mindfulness that we’ve used in Conquer Fear is a little bit different than your everyday sorts of mindfulness. The main difference is, detached mindfulness doesn’t aim to create a blank mind, if you like, which is the goal of a lot of forms of mindfulness, it’s to completely still your mind. Whereas, detached mindfulness is, as I’ve mentioned before, about acknowledging that you might have these unwanted thoughts or feelings. Being okay about that and just not engaging with them.
Not getting on the train that’s going to the station that you don’t want to go. As you say, mindfulness has become a bit of a buzz word recently, and I think there’s been a review done of some mindfulness approaches within the cancer context. I can’t quite remember the results, in fact, but it was done by some colleagues of mine, so I can happily send that through, if you’d like?
Joe: That would be great, yes.
Ben: You can put it on your website somewhere.
Joe: Yes, that would be perfect, Ben. You know, when it comes to clinical trials, I guess most of us think about drugs. Of course, online interventions also go through that process. Can you talk about how that works?
Ben: Yes. The first thing I wanted to say is that it’s true that many online interventions do also go through a rigorous evaluation and testing process. It’s certainly not true of all the websites and apps that are available out there for people affected by cancer. There have been several reviews showing that a lot of the websites and apps available through the app store are not based on any evidence or don’t really haven’t gone through any evaluations. That’s a concern and I think it’s probably caused by the whole regulatory system is still kind of catching up with this whole idea of delivering support online.
I think it’s a really valuable way of helping people, but it’s something that, yes, we do need to be careful about, ensuring that the interventions that we’re developing are actually helping rather than harming people. The way that we do that, for any research that’s done through universities or hospitals and public health focused institutions, to use e-TC as an example, we first developed the website with input from a variety of experts across several areas, including men who had testicular cancer, they are obviously the experts in that subject matter.
Then once the intervention had been developed, we wanted to test that we had to see the ethics application, which was reviewed to ensure that the way that which we were both delivering and evaluating the intervention was ethically sound and wasn’t likely to cause harm. Or, the benefits of that outweighed any risks of harm to participants. What happens first, normally, is that you test the acceptability of the intervention, whether people are likely to or find it useful and it meets their needs or preferences, and it can be feasibly delivered, so people actually engaging with it.
Once you’ve done that, you can then go on, generally, to do a larger study that evaluates whether it actually impacts on the outcomes that you’re hoping to change, such as psychological distress of quality of life. These are very rigorous processes that you have to go through. I suppose my advice to anybody who is looking for a good example of one of those tools is just to make sure you have a look at the about section of the website or app, to see who’s developed it and how it’s been done, because if it’s done by a reputable organisation, then it should be fine.
Joe: That’s fantastic, Ben. There’s a lot of work that goes into it. There are many aspects to building online interventions. You have to first understand the needs, you have to, as you said, involve the experts, come up with the solution approaches, and find the right language to present it. I guess design the user experience and build it, as well. How did you go about managing it all?
Ben: I think I touched on probably the two most important things. Firstly, to involve consumers, it’s not a term I necessarily like, but what I mean by that, the people that you’re developing this intervention for, they should be involved in the process of developing it, because they’re the ones who know what their needs are and how they’re best met. It’s important to use theory and other research that’s gone before to try and inform that. Ultimately, it should be driven by the need of the people that you’re aiming to help.
The other thing, apart from involving consumers, I think it’s what I’m really lucky to have worked with great teams, both for e-TC and Conquer Fear, the online intervention we’re developing to help people manage their fear of cancer reoccurrence. Then have experts that offer multiple different perspectives. Not only the people who have had cancer, but also the experts in oncology, experts in psychology, experts in E-health or online interventions. Also, just the experts in general research methodologies. Yes, I think those are the two most important things involved, the end users in your development. Try and do it iteratively, so get feedback often and make changes as you go along and work with a team that offers lots of different perspectives.
Joe: That’s great. It’s really reassuring to know that there’s a lot of work and a lot of structure behind it all. I want to ask you, with cancer, which is obviously tough to deal with, and many relationships and friendships are tested. Sometimes people don’t want to say the wrong thing or do the wrong thing. Sometimes you don’t really know what to tell people. It’s all very confusing, what advice do you have on that front?
Ben: Yes, it’s interesting that you ask about this, because I actually came across what I think is a great way to actually help people who have had cancer and their friends and family connect, which you might have heard of it before, but it’s called the Can-Do app.
Joe: No, I haven’t heard about it.
Ben: Right, yes. It was developed by a person who has been personally affected by cancer. Basically, the intention of the app is to help people who have had cancer to get support from their friends and family. The basic function that it serves is to enable people who have had cancer to develop a list of things that they’d like help or assistance with, and then they can add their friends and family as team members to this app, and those people can then either nominate themselves to help with a particular task that the person affected by cancer needs help with, or the person with cancer can actually allocated tasks to particular people. I think, as you say, it’s sometimes really hard to know how much or how little you should be doing. You don’t want to ignore the fact that someone has had cancer, but you don’t want to treat them like an invalid either.
Ben: It’s hard to find that balance. I think things like this app can really help with that. There are lots of other things, as well, if you now someone who’s had cancer, sometimes it probably depends on the person, you’d probably be the best judge of that, but a little bit of humour can sometimes help. There are these great Emily McDowell empathy cards. Look them up if you haven’t seen them, but there are things along the lines of, please let me be the first person to punch the next person who tells you cancer is a journey.
Joe: I love that one.
Ben: You know, just tackling some of those clichés that get thrown about to describe people who have had cancer. I think that ultimately, the message is, obviously, it is hard to know what to say or do to or for someone who has had cancer. The worst thing that you can do is to not get in touch with them at all because you’re worried about saying the wrong thing. We’re lucky now that we’ve got text and email and messages and stuff like that, so you can really think about what you want to say before you do it, if you’re feeling like a face-to-face conversation might be a little bit awkward.
I suppose if you’ve had cancer, just acknowledging that it can be hard for people to know what to say, it’s important. Often, people, if they’re not familiar with the whole cancer process, then they might be unsure about where you’re up to and that kind of thing, so this Can-Do app enables people to give brief updates and just send them out to their support team, if you like, just to keep people in the loop. Just doing things like catching up while doing an activity, I suppose it takes a bit of the pressure off. If you’ve got a common interest, then doing that. I suppose the other thing that people with cancer can do is – there’s no doubt that if you haven’t had cancer, it’s probably hard to fully comprehend the magnitude of the experience of someone who has.
People with cancer often say that, so that’s where I think support groups or even online forums and things can be quite useful, because those people get what you’ve been through. They’ve been there, so they can maybe validate your experience to some degree.
Joe: Yes, that’s fantastic, Ben. I really love the Can-Do app that you’ve described, because I’ve actually been thinking about the same lines, to allow people to volunteer for certain things and put up their hand and say, “Yes, I want to put up for that”, but in a way that is non-threatening on one hand but is also something that happens on your terms. It’s not something that’s forced on you and someone does something because they think it’s right, but it’s not what you want, you know?
Ben: Yes, that’s what great about that. Most people want to help, but that app helps them know the best way that they can help, from the person with cancer, themselves.
Joe: Yes, exactly. The other thing, Ben, is caregivers, are people, maybe their partners or parents or friends of someone who’s got cancer, so it might be really stressful on them too because all the focus is on the person with cancer, they’re often the people who get left out emotionally and mentally. What can they do to take care of themselves better, or where can they turn to for help?
Ben: Yes, look, there’s no doubt that caregivers do it tough, there’s a lot of evidence that suggests that often they’re actually struggling even more than the people who had cancer, themselves. Certainly, in the case of fear of cancer recurrence. It’s often the case that the carers are more worried about the cancer coming back than the person who’s had cancer. The additional problem for carers is they often feel like they’ve got to be strong for the person they’re caring for, therefore, they don’t express those concerns and they get really bottled up and they’ve got no one to go to and to talk to.
There are support groups for carers, as well. That’s something I think is really useful, talking to other people who are going through the same challenges and facing the same issues that you are. I think it’s really important that, as you alluded to, carers need to sometimes take a bit of time to care for themselves. Ultimately, if they burn out because they’re just so overwhelmed by the task of caring for someone with cancer, then it’s not going to help that person, it’s not going to help them either, if they just work themselves into the ground, basically. There are a few useful websites I think, or resources. Again, the Cancer Counsel is that informational support line: 13-11-20. It’s not just setup for patients or survivors, it’s also accessible to carers.
There are bits of the Cancer Council website, as well, that’s specifically for carers. They can provide information on things like some stuff, like more practical things, like government support that they might be entitled to, for example, to offset some costs of caring. It’s not just a time cost for the carers. Often, caring for someone comes at a great material cost, as well. I think getting help for that, any help that you can get is useful in that area. There’s one website that I think there are more and more interventions being developed for carers, thankfully. Although, I suppose the focus of research has been on the patients up until now and survivors, but helpforcancercaregivers.org is a website established by a hospital and organisation over in the States. I think it provides some really useful strategies for the carers.
Joe: Yes, that’s fantastic, Ben. Thank you so much for sharing some really fantastic advice. I’m going to definitely follow-up and put all of the links to the resources that you’ve mentioned just now. Thanks very much. It’s been a great help.
Ben: Yes, thanks, Joe. It’s been really great talking to you.