Video transcript
Innovations in Managing Mask Anxiety & The Remove The Mask Research
The Head & Neck Cancer Innovations 2020 Video Series is brought to you by St Vincent’s Hospital Sydney & The Kinghorn Cancer Centre. In this episode we talk to medical physicist and researcher, Paul Keall and psycho-oncology researcher, Phyllis Butow about innovations in the treatment of head and neck cancer patients, including managing mask anxiety and the Remove the Mask Project. We also hear from two head and neck cancer survivors, Hans Ede and Julie McCrossin. For more information please visit our website or our You Tube channel. The podcast versions can be found on our SoundCloud channel.
Julie McCrossin, Head & Neck Cancer Survivor
Hans Ede, Head & Neck Cancer Survivor
Prof Paul Keall, Director, ACRF Image X Institute, University of Sydney
Prof Phyllis Butow, School of Psychology, University of Sydney
Julie McCrossin
Hello, my name is Julie McCrossin. And it’s a huge pleasure to welcome you to this video on the Remove the Mask project. And this is one of a series of videos on innovations in treatment and care for people with head and neck cancer. Treatments and care that are going to improve survival but also quality of life. And they’re hosted by St Vincent’s Hospital Sydney and the Kinghorn Cancer Centre.
My name is Julie McCrossin, as I said, and I am a survivor of head and neck cancer myself. I was treated seven years ago for stage four oropharyngeal cancer in my tonsil, tongue and throat. And I used the safety mask, as I like to call it. It’s also known as the immobilization mask, which is necessary to keep our head still while they target the radiation to destroy the cancer. And this video is all about how that experience can be tough for some patients, not others, and some interesting research into perhaps being able to develop an alternative technology to that rigid, individual mask.
So I’d like to begin, before I show you a couple of patient stories, including my own, talking about the mask, I’d just like to acknowledge that we are on Aboriginal land. We’re broadcasting to you today from the land of the Gadigal people of the Eora nation. We’re in the Darlinghurst area, central Sydney. And I’d like to acknowledge elders past and present and emerging. And to acknowledge that Aboriginal people and some Torres Strait Islander people are disproportionately affected by head and neck cancers, the sort of cancers we’re talking about.
So before I introduce you to two very interesting professors, who are going to talk about the Remove The Mask Project, let’s hear from a couple of patients, myself, and Hans Ede, who found the mask a difficult experience.
Julie McCrossin
So my name is Julie McCrossin and I’m a former radio broadcast and television presenter with the ABC and network 10. And a print journalist.
Just over five years ago I got the diagnosis of stage four cancer, in my tonsils, tongue and throat. I’m alive for over five years later, I can speak and I can swallow. I am pro-radiation therapy.
But what I found really traumatic was the immobilisation mask as they’re called. I prefer to call them a safety mask.
I can remember vividly the first time that I was clicked down firmly in the big grim mask. Because I immediately panicked. I felt my heart rate go Force 10. I went red in the face and water sweat started pouring off me.
And I immediately said to the radiation therapist who’d clicked me down “Please take it off.” To their credit they whipped it off me.
But I remembered that there were about 25 people waiting outside.
I remembered that my surgeon had told me I was not eligible for surgery.
I had to cope with radiation.
So I literally thought “suck it up” and I said “put it back on”.
But it was just a desperately difficult and panic stricken experience, and to panic for 20 minutes is a really remarkable thing.
If it is possible through research to find an alternative to the mask – to remove the mask – and can keep us safe, I would love to live long enough to see that happen.
Hans Ede
I’m Hans Ede I’m 64 years old and living down in Camden. I was diagnosed with cancer in 2011.
When they told me they had to have an operation and then after that radiation.
So the first thing was to make the mask the dreaded mask, like one of these [ holds up green mask ].
When the treatment started and they asked, do you want to have something for it to calm your nerves and things and of course being a man you see, I’ll be right. But I knew I wouldn’t be hundred percent right because I’m claustrophobic
So 25 to 30 minutes strapped up the you can’t move. It was horrendous. It was dreadful. But I can take a lot of things.
I just learned to have happy thoughts and to try to be not there to be somewhere else and get out of it. And after that I recovered and I wasn’t a nervous wreck. That was the right thing to say.
But I felt very uncomfortable to be in confined spaces after that as well. Then recovered and went back to work and life was pretty good again.
Two years later, the cancer came back on the other side of my neck. So we had to do the all over again.
I would have been in for a couple of minutes and I was waving my arms madly and I say I can’t do this and I come back out again. So then they had to give me a sedation and had to wait and half an hour for that to take place and things and try it again.
So that was pretty traumatic. But then I heard that a lot of people need to be sedated every time. Two out of almost 60 treatments I freaked out. But I did it.
And I’m pleased that I did.
I’ve been cancer free for five and a half years now. So in my book I’m cured.
Julie McCrossin
Well, that’s two patients’ stories of the mask. And I really do want to emphasize, particularly if you’re a newly-diagnosed person, and you’re going to be having radiation therapy, I’m only alive because of radiation therapy and my mask kept me safe. But it would be great if there was an alternative option.
And that’s what we’re talking about today. But don’t worry, if you do need to have the mask for your treatment, there are many ways you can get help, and we’ll be talking about them now, to live through that experience with less stress than Hans and I experienced. So let’s meet our two special guests. We’ll begin with you Paul. Can you introduce yourself and, and tell us who you are and in a nutshell what you do?
Paul Keall
So thank you Julie. I’m Professor Paul Keall. I’m the director of the ACRF image X Institute at the University of Sydney. And our job is to create new medical devices to how we can improve cancer imaging and targeted radiotherapy and to make lives better for cancer patients.
Julie McCrossin
And in a second, we’ll let them know how we met and the impact it’s had on your working life. But first of all, Phyllis, could you introduce yourself?
Phyllis Butow
Yes, my name is Phyllis Butow and I work in psycho-oncology, which is applying psychology to cancer and cancer experiences. And I am involved in a couple of research groups at the University of Sydney, that have a particular interest in this. And a few years ago, we started researching mask anxiety, and that’s why I’m here.
Julie McCrossin
Just before I come to Paul to hear about some of the technical work he is doing, what is that expression “mask anxiety” that people talk about in head and neck cancer?
Phyllis Butow
Well, I guess it’s just putting two words together that we were familiar with, but aren’t usually together. So it’s really just about the anxiety that people feel specifically related to wearing that safety mask during radiotherapy. And that’s clear that that does impact some people. And so it’s become a term that’s put together.
Julie McCrossin
Okay, so it’s almost a term of art within the head and neck cancer community that some patients experience mask anxiety. I personally always wonder who is it, with a cancer diagnosis, who lies flat with a mask on, and is left alone in a radiation room, that doesn’t feel a little unsettled by the experience. But let’s… We’ll pursue that perhaps later. But Paul, before we let them know how we met, what is the Remove the Mask Project? What are you setting out to do?
Paul Keall
Well, really the genesis of the Remove The Mask Project was when you were at a medical physics conference in Sydney. And you were telling us about your experience and you were waving the mask around. And how ill-prepared you were, from an educational perspective. But also just what a bad experience it was for you. And also, sitting in the audience saying, actually, we have the technology. If we combine three separate technologies and bring them together, we should be able to, with a lot of effort and a big team, ‘remove the mask’ and make treatment effective and safe for head and neck cancer patients without the mask.
Julie McCrossin
In the medical health world to do a fundamental change of process is a very big thing. So can you tell us a little bit about the history of the Image X Institute? Maybe one or two examples of the kind of technological innovations that you have been able to develop? And also the sort of skills of the team you’ve collected to try and bring about an alternative to the mask? Because that’s a pretty big goal you’ve set yourself.
Paul Keall
Yes. And it is, it is ambitious. And I think we do have the track record. And we’re a team of amazingly dedicated, passionate, primarily young physicists, engineers, computer scientists, who have got a common vision to improve how we can image and target cancer. We work very closely with clinicians who are very engaged and wanting to have technology to improve the treatment for their patients. And a couple of examples that we’ve taken, from the sort of discovery and innovation all the way through to clinical trials, are the ability to find the cancer during treatment in the prostate and liver for patients and then also to be able to move the radiation beam so it follows the cancer within the body. And these are technologies again going from that the bench to the bedside. Another technology we’ve had for imaging lungs is now available worldwide. So we’ve done this before, and we think we can do it again.
Julie McCrossin
That’s amazing and, and you’ve collected a team of people that includes radiation oncologists, the doctors who are responsible for saying what sort of radiation where it has to go, I imagine you’re going to have to convince them you’ve got a very safe alternative before they’re going to let that mass get off the head of a patient?
Paul Keall
The doctor-patient relationship is so important and that the patient’s really relying on the doctors that that level of trust is very high and therefore the level of safety that the radiation oncologists, the but their bar is very high. So yes, we need to prove, through a careful set of experiments and controls, that this will be safe and at least as good, if not better, than the current way that patients are being treated now with the safety mask.
Julie McCrossin
Look before I come back to Phyllis and find out the role of a professor of psychology in this Remove The Mask Project, all research takes money and, as I understand it, you have received some funding for Remove The Mask, at least to begin it, from Cancer Australia. Can you explain what is Cancer Australia? And what money have you received? What are you expected to do with those funds?
Paul Keall
Sure. So actually, our first initial funding came from a crowdfunding campaign and the level of engagement we’ve had from patients and clinicians has been really heartwarming and encouraging, that people see this as a real problem. And we did we have got funding from Cancer Australia who provide funding, but also advice for cancer patients across Australia.
And they’ve funded the Remove The Mask Project for three years to allow us to really combine these three technologies of monitoring the patient surface, combining the surface imaging with X-ray, so we can sort of see inside the patient, and then adjusting the radiation beam. And these are all very complex technologies. And we also need to not do these solutions in isolation. When you need to do solutions that are acceptable for the patients and also acceptable to the doctors as well. So it’s very much a lot of things coming together and working on this common problem to remove the safety mask.
Julie McCrossin
How long before you’ll actually be trying it on a patient, do you have some sense of that?
Paul Keall
We’ve got our prototype is ready now and later this year we would look to do some initial prototyping. The goal is to get this to patients by the end of the third year of the grant. So we’re talking 2023. And we hope to get there.
Julie McCrossin
Okay, so it’s not guaranteed, but there’s a serious chance there will be an alternative to the mask to keep a patient safe, while radiation is delivered to the head and neck.
Paul Keall
There’s no guarantees and research but we will work extremely hard to get there.
Julie McCrossin
And we’ll be showing some pictures. We’ve probably already been seeing some pictures while you’re speaking to illustrate some of the work that you’re doing. Let me come back to you, Phyllis Butow. What so what’s your role in this project?
Phyllis Butow
Well, Paul’s role is to get the technology right, which is very important. My role is to make sure that we really understand what people experience in the mask and out of the mask. Because what we don’t want to do is to replace one anxiety, about being pinned down by the mask, with another anxiety that, if I move, somehow the treatment won’t work or I might harm myself.
So we’re very carefully going to track how people are feeling and the anxiety that they’re experiencing, if they do, at all stages of the project. And we’re also going to be interviewing every person who interacts with the research team, to hear their reactions and what they’re thinking and feeling as they go through this experience.
Julie McCrossin
So you as a professor of psychology with other team members will be monitoring and engaging with the patients involved in the research, for this alternative to the mask, in real time, while it’s happening? So it’s both a technological project and a psychological monitoring of the patient project?
Phyllis Butow
That’s right. So we’ve carefully selected some questionnaires, short questionnaires, that we think will pick up any anxiety that people might feel. And we’re going to be giving that, in real time, as they experience being in the mask, or in the technological alternative, so that we can track how they’re feeling. And as I said, we will be talking to them afterwards, to really capture what’s gone on in their head and the detail of that so we understand what the experience has been.
Julie McCrossin
And for patients and families watching this, who are unfamiliar with the research world, you will write that up and publish it in journals? That will be something that can be posted on websites and patients and families can see the work that you’ve done?
Phyllis Butow
Yes, and it provides that sort of hardcore evidence that we can do this in a way that supports patients and reduces their anxiety.
Julie McCrossin
Look, thank you. And I’ll just say to our viewers that I’m talking to Professor Phyllis Butow from the University of Sydney, a Professor of Psychology, and Professor Paul Keall from the Image X Institute, also at the University of Sydney, and we’re talking about the Remove The Mask Project. And I just want to say that as you listen to us and watch what we’re talking about, if you’ve got any questions at all about radiation therapy to the head and neck, or any fears or concerns you may have, there is a Cancer Council information and Support Line 13 11 20 – 13 11 20. It’s free.
There are clinicians on the end of those calls and they can give you advice and referral and information. They can send you booklets all about radiation therapy and head and neck cancer, in fact every aspect of cancer. I’d also like to mention another great source of evidence based-information, which is the BeyondFive website. So it’s www.beyondfive.org.au. And that’s a website especially designed for patients and families.
It’s also very good for multidisciplinary team members. It’s got patient stories, it’s got information on every aspect of head and neck cancer and some quite amazing anatomical diagrams of where our cancers are and how they can be removed.
Look just turning away from this particular project at the moment, to the, I suppose the state of research for head and neck cancer patients and our feelings about the mask generally. Can you tell us about any recent or current research that gives us an idea just how many people, like Hans Ede and I at the beginning of the video, we saw that we both found it really tough. But I’ve met people who were not bothered by the mask I’ve even met people who fell asleep on the bench while they were having the treatment. So what does the research tell us about how common anxiety is and what the patient can do to help themselves?
Phyllis Butow
Well, there’s actually surprisingly little research on this topic, given the impact it has on people like you and Hans. And in fact, Australia has punched above its weight in this area. And a lot of research has come out of New South Wales and Queensland, in fact. And what that research tells us is that, I think, as you said before, there isn’t anybody who doesn’t come into this new situation with some trepidation and fear. And it is a scary situation to be in.
But many people do cope with the mask. But the research suggests about that about a quarter of patients, who are having radiotherapy with the mask, struggle. And about six in 100 people really struggle to the point where they’re having panic attacks and the treatment has to be stopped. So that’s not an insignificant number of people who struggle with this.
Julie McCrossin
And what does the research tell us helps? What do the patients, that either you or other researchers have spoken to, what do they say helped them cope? Because as probably most people watching this will know it’s terribly important, once we begin our radiation treatment – I had 30 consecutive days. Some people have more –
But my understanding, correct me if I’m wrong, is that it’s terribly important we turn up for every session exactly as we’re told. And generally, we’ll also have, once a week, some chemotherapy dripped into our arm, which helps the radiation work. So we need to manage our feelings because we need to not miss a session.
Phyllis Butow
The good thing is that most people do come up with strategies that help them to manage the anxiety. And people have spoken to us, when we’ve interviewed them, and in other research projects, and given us a whole range of strategies that they use. One of them is to just talk to the health professionals during the treatment, which is helpful to know, not only that someone is watching me and if I really am struggling with this, they can see me and we’ll be able to stop if I need. But also just to feel that someone is there, you know, traveling along the path with you.
So that’s one strategy. A lot of people use breathing, relaxation, meditation, visualizing a peaceful scene. Those sorts of strategies to help calm the anxiety. And another set of people, and I think this is something that you’ve told me about as well, really find listening to music very helpful. Not only as a distraction, but because they can time the treatment according to the music. You know, when the flute does that trill I know that I’m five minutes from the end. So they find that very helpful.
And I guess the other thing that people have discussed finding helpful is reducing the size of the mask in any way possible. Whether it’s cutting out bits from near the eyes or the mouth, or just making the masks smaller. There’s a very big study in Sweden of about 250 people, which showed that the smaller the mask, the less intimidating it was. And that was part of the rationale really, for this study. If we can make the masks smaller, that’s going to be of benefit to people.
But even with the current masks, a lot of people do manage to keep their anxiety under control. And if they really struggle with this, you can use anti-anxiety medication and units, radiation units, are set up to do that. They try and avoid it. And on the whole, if you work and find your strategy that works for you, most people manage the anxiety.
Julie McCrossin
I must say that for myself, I wish I had heard that list before my first treatment. I think practice varies enormously and there’ll be people watching this from all over Australia, New Zealand and indeed other parts of the world. But my impression is in Australia practice varies enormously. And in some places they think I’ll we’ll let them go for one or two sessions and see how they go. And personally for me, and I accept I was in the upper range of anxiety, I’m sorry that approach was taken because those first few sessions before I got help a very, very tough for me.
The other thing I just quickly say, and I don’t know if either of you are familiar with this, I think practice varies in Australia about whether people are willing to cut holes in the mask. That some radiation oncologists, so the doctors primarily responsible, have the view that they want all the mask there to hold you rigid. And they don’t like to cut out a mouth hole, or an eye hole, except in the pediatric or children context, where they will perhaps do it for children but not adults. I don’t know if either of you have any knowledge around that issue?
Paul Keall
Sure. There are there are initiatives to, because this is obviously a known problem that, you know, how can we make the mask at least like less invasive. So there are different groups trying to balance that sort of safety and keeping the patients immobile. The European guidelines are currently to have a full mask and , where possible, not to cut corners, because the patient’s well being ultimate long term well being of the cancer outcome, yet, Trumps Trump’s the …
Julie McCrossin
… the desire to cure the cancer or to limit and eliminate the cancer.
Paul Keall
So that the desire to eliminate the cancer outweighs the benefit or the reduction in anxiety, which is a more of a shorter term, shorter term side effect. Really, the long term side effect of the cancer control is more important.
Julie McCrossin
One of the concerns I have, and we have, I should let our audience know, a completely separate video on managing distress and innovations in managing distress. Not just in relation to those of us who may have difficulties with the mask, but generally managing distress, in terms of the short and longer term impact of head and neck cancer treatment. And I think that there has been a tremendous and positive focus on the physical well-being of head and neck cancer patients.
Sometimes with radiation, some people, when, towards the end of their treatment, they may actually get an open wound on the neck, where the radiation has come in, and we get endless pain relief and beautiful dressings and everything is done. I don’t think there’s a comparable investigation, concern and training around emotional pain. If I could call it that. And if there’s one thing I guess, I hope your project will achieve, a technical solution to an alternative to the mask, but also perhaps for psychologists, social workers, nurses, working with head and neck cancer patients, there might be an increasing focus on the emotional well-being.
Phyllis Butow
And I think that is absolutely critical and in one of the studies that we did recently, we interviewed health professionals who work all the time with people with head neck cancer. And one of the things that they said was that it’s really critical that there’s a whole-of-service culture of valuing patient support. And if people at the ground level don’t feel that the managers on the top are prioritizing mental health, as well as physical health, it makes it more difficult for them to spend time with patients to actually manage this better. So the whole culture of the of the service really has to support this sort of approach to make a difference.
Julie McCrossin
It’s very significant point Phyllis because as someone who has been a patient 30 days in a row In a bunker, as we call them, you’re always waiting with a great big group. And you see that the radiation therapists, these are the technicians who both fit you into a very precise position, and then go out. Leave you alone in the bunker. And look at you through a glass screen with a bank of computers and who ensure that this very precise X-ray is doing its job.
Julie McCrossin
They are under pressure to be very efficient in their time management, because there are so many people waiting. And so that even if you, as a patient do demonstrate distress, for example, you might weep or you might go red in the face.
Julie McCrossin
They don’t necessarily have the time to address your need. So tell me, this word you keep hearing about, like referral pathways. What do we need to let our dietitians, our speech pathologists, our radiation therapists, our radiation oncologists, know about emotional needs? And their importance? What would be your message as a professor of psychology?
Phyllis Butow
Well, I think it is really critical that up front, before someone starts, right from the very beginning, that people are given information about what to expect. And what they will experience. Not only, you know, this will happen, and then this will happen. But what will I hear and feel and sense. So that people are prepared. And certainly patients have told us that knowing what is coming is really helpful. So having the time before you even start to do that is really critical.
And I think it is reassuring for people to know that it’s normal to feel anxious under these circumstances. But there are things that we can do that will make it easier. So that they know to speak up. Because it’s not always easy for health professionals, unless someone cries or, or goes red, to actually even be aware of what’s going on in someone’s head.
So it’s important to give people permission to speak up about anxiety, so that they can be offered some of that support. And, you know, there’s not enough psychologists in the system and psychologists can be very helpful. But there are simple strategies that you don’t need a psychologist for that therapists and patients can work together to come up with a plan about how you, as an individual will best manage this. But all of that takes a bit of time.
I think that if you deal with it up front, you’re less likely to cost the system down the track. Because you’ll have somebody who can stick it out through the treatment which they need. There’ll be less interruptions as you, you know, move ahead. So we have to demonstrate that in future research, I think, to really convince the health system that this is worth it.
Julie McCrossin
Thank you so much. I’ll come back finally to you, Paul. What have you learned about hidden neck cancer with all of this? Because you’ve dealt with lots of cancers. What have you heard about head and neck cancer patients was new to you?
Paul Keall
Well, I think for me was just because of I’ve worked in radiation oncology departments, and we just have head and neck cancer patients, and they just get treated in the mask. And it was really just that, wow, something we sort of just take for granted, as the status quo. And then just really rethinking, actually we can we can change this. Like something we’ve just sort of accepted. So to me, I think that’s that lesson of changing the mask for head and neck cancer patients, is something I think we should as researchers, we like to do new things, and just question everything we’re currently doing and just say, “How can we do this better?’
Julie McCrossin
That’s innovation in a nutshell. Well, ladies and gentlemen, I just want to on behalf of you. thank Professor Paul Keall from the Image X Institute, the University of Sydney and Professor Phyllis Butow from the University of Sydney. I think it’s School of Psychology, is that correct?
Julie McCrossin
And if you’ve got any questions, relating to what you’ve heard, remember, Cancer Council 13 11 20 – 13 11 20. They will either have answers, or they’ll find the answer for you. And they’ve got written information for you. And also the BeyondFive website. So that’s www.beyondfive.org.au.
Julie McCrossin
And wherever you’re seeing this, we’ll be putting all this information up. And I know people will be watching this in New Zealand and in other parts of the world so we will be collecting important telephone numbers and websites on these issues for everybody to be able to refer to. So thank you very much.
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