Video transcript
Innovations in Radiation Therapy Part A
The Head & Neck Cancer 2020 Innovation Video Series is brought to you by St Vincent’s Hospital Sydney & The Kinghorn Cancer Centre. In this episode we talk to radiation oncologist A/Prof Dion Forstner about innovations in radiation therapy for head & neck cancer patients. 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
A/Prof Dion Forstner, Radiation Oncologist, Genesis Care
Julie McCrossin
Hello, my name is Julie McCrossin and it’s my pleasure to welcome you to this video on innovations in radiation therapy for head and neck cancer patients. And it’s one of a series of videos, all about innovations to improve quality of life and to improve survival. And these videos are hosted by St. Vincent’s Hospital Sydney, and the Kinghorn Cancer Center.
As I said, my name is Julie and seven years ago, I was treated for stage four oropharyngeal cancer, and that’s a cancer in my tonsils, tongue and throat. And that’s an example of a head neck cancer. And I’m here today. I was treated with radiation and chemo. Our purpose is to raise awareness about head and neck cancer, and also to give you high-quality, evidence-based information.
And I’d like to acknowledge that we’re broadcasting to you today on Aboriginal land, the land of the Gadigal people of the Eora nation, and to pay my respects to Elder’s past and present and to emerging leaders. And I want to acknowledge that Aboriginal people and some Torres Strait Islander people are disproportionately affected by the head and neck cancers that we’re talking about in this video. So. Our focus is radiation therapy.
So, just before we meet the clinical peeps, I’d like to introduce a short comment and question from Hans Ede, who’s a head and neck cancer patient who’s had a lot of treatment.
Hans Ede
Hi, I’m Hans Ede from Camden, south of Sydney. In 2011 and 2013, I had surgeries and extensive radiations to my throat. To all the surgeons and oncologists and nurses, to you, I’m forever grateful and thank you for saving my life and making me a survivor beyond five. But three years ago my body started to break up and I had problems.
So my question to the panelists, is there such a thing today, or is it any plans to introduce a multidisciplinary team for after the treatment for patients with complications, to help them to have quality of life, not just to survive, but the quality of life is important? And I would hope, if that’s the case, we can go from instead of being beyond five to beyond 10? Thank you.
Julie McCrossin
So that was Hans Ede. And I know he speaks for many survivors of head and neck cancer who was so glad to be alive. But many of us are dealing with some quite significant side effects. Many of them reduced, but for some people they do continue to be part of our lives. And so this series is all about what can we do to either reduce those side effects or functional changes, or indeed, to live with them more effectively.
Julie McCrossin
And I’ve got a radiation oncologist, a dietitian, and a speech pathologist who will tell you about what’s the good news about what’s improving our survival and lessening the side effects & also what’s on the horizon. So let’s begin with a radiation oncologist. So Dion, welcome. Can you introduce yourself and explain a little bit about your history looking after head and neck cancer patients like me and what your job is now?
Dion Forstner
Well, I’ve been working in the area of head and neck cancer management for the last 17 years as a radiation oncologist and I’ve worked in various parts of Sydney and previously and I did my training in South Australia and I hail from Tasmania. So I recognize that there are lots of differences for patients, whether they come from a metro large metropolitan area, or from regional areas and face enormous challenges. In the days I trained in South Australia, there was no radiotherapy in the Northern Territory. So patients were flying thousands of kilometers to have their treatment.
Julie McCrossin
And it’s fair to say that in terms of challenges faced by patients and family, access for rural and remote and some outer suburban people in Australia & New Zealand can still be an issue?
Dion Forstner
Absolutely. And especially in an area like head neck cancer, which isn’t one of the really common cancers. And management is very complex and very multidisciplinary. This cancer cannot be managed in isolation by a single clinician. It must have multidisciplinary management of these cancers. And so accessing that from a regional or remote area is a real challenge and causes a lot of stress for patients and their carers in particular,
Julie McCrossin
I want to hear from you what you see as the absolute key messages when it comes to innovations that are improving survival and quality of life, particularly obviously on radiation therapy. And as I understand it, you believe that getting the right treatment to the right patient is critical. And that that is only possible with a multidisciplinary team, where the team members have got specialist experience with head and neck cancer patients. Can you explain what all that means and why it matters?
Dion Forstner
These cancers are not the most common cancers. They are in a very challenging area for people and function is hugely important.
Julie McCrossin
Everybody talks about this function. What is this function?
Dion Forstner
Well, we want people to be able to talk well. To be able to eat well. To be able to communicate well. Obviously, it’s much more than just speech. And they are the things that we can have an enormous impact on and sometimes we do, because the cancers advanced and we can’t avoid that.
But we want to make sure that we are giving the patient the best chance of cure and the best function, in terms of outcome. And we have to weigh those things up. And no one of us can really make that decision. It needs to be made where there’s a discussion between a radiation oncologist, a head neck surgeon, a speech pathologist, dietician, nurses, a palliative care physician sometimes, with support from the radiologists and pathologists…
Julie McCrossin
and medical oncologists, the chemo people?
Dion Forstner
Absolutely. And only when we have all those people in the room, can we really come to form the right decision for that patient. Not always. The patient doesn’t always have to be there and in some cases they will be. But then they obviously need to have been well assessed. And the information about that patient brought to that meeting for discussion. Now, there are some very early cancers, you know, very small cancer on the tongue, or maybe one on the gum, maybe one that can be dealt with by the surgeon. But the majority of cancers should be discussed in a multidisciplinary team setting.
Julie McCrossin
Okay. And can I ask you, because our focus is on innovations in radiation therapy, is the use of a multidisciplinary team an innovation? And if so, what improvements have you seen for the patient as a result of that? Like, how long have these teams been about and does everybody have access to one?
Dion Forstner
Well pleasingly, Julie, these teams have actually been about for a long time and, in fact, in head and neck cancer, they really, in most institutions, they’d be the most long standing multidisciplinary team. And they often function actually much more cohesively than other multidisciplinary teams, partly because they’ve been around for so long.
But it’s very important that each of us that attend those meetings brings the innovations in our area to those meetings to be weighing up the pros and cons with, you know, new techniques. Can we offer a better outcome with non-surgical management versus surgical or the other way around? Or how do we actually combine a new, an innovation, whether it’s a change in some sort of therapy, or a new surgical technique and so on? But we can only really do that because this is multidisciplinary. It, requires often more than just that one modality, if we making sure we’re bringing those innovations in in a very coordinated way.
Julie McCrossin
Let’s turn now then to the innovations in your particular area of expertise, which is radiation therapy, because you’re a radiation oncologist I want to hear from you, what are the key innovations in that area that are good for the head and neck cancer patient? And for people watching this who have never seen a bunker, where we’re standing now, what is this room and illustrate what you’re going to say by showing us where it happened?
Dion Forstner
Well, maybe I’ll start by telling you about this machine, Julie. So this is a linear accelerator or a Linac. And this is the radiation treatment machine. So the powerful X rays come out of here and then go into the patient. The X-rays are just like X-rays that people have for when they’re having a chest X-ray or a CT scan, except they’re more powerful. They don’t feel anything while they’re having them.
And then while the X-rays are coming out of here, the machine is rotating around and that allows us to very accurately deliver the highest dose to the area that needs to be delivered. That’s the tumour. And to provide or to ensure that there’s a much lower dose to the surrounding areas. And that’s really the thing that, over the past decade and a half, has changed a lot in radiation therapy. Where we can avoid those very important structures that are so important for function that aren’t involved by the cancer. We want to keep the dose as low as possible.
Julie McCrossin
And is that on things like saliva glands or the bone where our teeth is? Tell us what you’re trying to miss?
Dion Forstner
Absolutely, in past times, radiotherapy caused people to have long-term, severe dry mouth. Now they still get a dry mouth, but in most people that’s temporary. But still, some people will get, depending where their tumor was, a degree of permanency to the dry mouth. But we have big saliva glands that are the things that produce our saliva and we want to avoid those where possible. Where it’s safe to avoid them without avoiding the tumour. Because, of course, we don’t want to avoid the tumour.
And the other things that are important are the dose to the jawbone. We know that, in the long term, there can be significant problems if there’s a high dose to the jaw bone. Also to the swallowing muscles. And they’re really critical as to how people in the long term, people like yourself that have had a high dose of radiation, what they can eat. How much enjoyment or how much trouble they can have, just with that. It’s such an important function of eating every day. Swallowing their saliva.
Julie McCrossin
So are you saying that a key area of innovation is the increased precision of the targeting of the X-ray beam to the tumor, and also the reduction in the X-ray beam to healthy tissue?
Dion Forstner
Absolutely. And you know we’re not there completely. There’s still dose that’s given, a lower dose and getting the X rays in, there’s a lower dose to some of these areas and we’d like to bring these down further.
An area that I see that we’ll be moving towards is where each day, with the actual area getting treatment, that the patient first has a scan on a machine like this, or there’s a new machine where there’s an MRI scanner attached to the linear accelerator, where it can actually visualize how big the tumor is on that day and what shape it is. And we actually create a treatment plan for that patient on that day. Whereas at present, we start with a treatment plan and we will change it if there are significant changes in a patient’s anatomy. But on the whole, what we start with is what we end with in terms of what we’re treating.
Julie McCrossin
So this is an area of innovation that’s occurring right now, because, as I understand it, St Vincent’s Hospital is going to launch an MRI Linac this year. That’s an area that’s already begun for some cancers. But when do you hope it might be able to help head and neck cancer patients?
Dion Forstner
There’s already a spot for it. And that’s those patients who come back having previously had radiotherapy and need even higher precision to a small area. I think that’s a place for them. The MR Linac treated its first patient this week. And that wasn’t a head neck cancer patient, but I think over the next six months, we will have our first head neck cancer patient on there.
But there’s still a lot of work. That’s a new technology with a lot of work to do to further develop it to the point where it would be the standard treatment machine for a head neck cancer patient. At present, really the key treatment is that delivered by this machine.
Julie McCrossin
I want to ask you more about side effects and the possibility of reducing them or even helping people who have side effects now. But first of all, I have to ask you about the mask that’s behind you. Do you mind just showing it to us and explaining why it is so important now?
Dion Forstner
So this is a rigid plastic mask, there is some movement in it for patients and it does have cut out around the mouth. It is obviously designed that patients can see through it and they can breathe through it. But it does keep them very still and so we deal with millimeter accuracy. If the patient is a millimeter different to the position the treatment was planned in, then the bed needs to move that millimeter and we can’t get that accuracy without some degree of immobilization.
So I know Julie, you like to call this the “safety mask” and that’s what it really is. It’s about protecting the areas that are really Important. Protecting the eyes and those saliva glands. But at the same time, making sure that we don’t miss that tumour. And with old radiotherapy, where it wasn’t as accurately delivered, there was a lot more give. You were much less likely to miss the tumour if the patient moved a bit.
But the problem of that radiation therapy was that it caused a lot of dose to go to areas we didn’t need and a lot of the side effects that that people will read about and hear about for patients that were treated, you know, more than a decade ago with old techniques.
This mask is made. It’s heated up and pulled over the patient. We recognize it’s really difficult for some patients and we have to provide them lots of support. I certainly now never get a patient to agree to radiotherapy, or talk to them about radiotherapy, without showing them one of these things. And then there are some very useful videos, like on the Targeting Cancer website that you’ve done Julie, to help educate patients. So they aren’t surprised, when they turn up on day one, what this is about.
Julie McCrossin
And in a way, what you’re saying is that mask, which is made for each individual, we all have our own personal mask, is part of the price we pay for much more precise treatment and fewer side effects? It’s just part of what we have to manage and you’ll help us manage.
Dion Forstner
That’s right. And I think, you know, about the work being done by groups like Image X. You know, that’s the way we are going. We know already we have breast cancer patients. We can now treat them without the tattoos they used to need to have to make sure they are in the right position. But it is a very significant step further to be able to take the mask away for patients that are having treatment to the head, neck or brain region.
Julie McCrossin
And in another of our videos, I’ll just let our audience know, we will be interviewing people about the Image X Institute and some research they’ve been funded to do on an alternative technology to the mask. It’s called the Remove the Mask Project. And we’ll also hear from a leading psychologist who will explain some of the strategies that people, who do find it an anxious experience to wear the mask, some of the practical strategies that are used to help us cope. So we’ll have other videos in this series that will deal with that.
Let’s come back to more on the future. Where the future lies. You’ve mentioned this MRI Linac and that’s already, you know, taking lollipop steps, which is fantastic. We have got a video on chemotherapy and immunotherapy and some of the innovations there. Talk a little bit about the integration of radiation therapy and immunotherapy, what’s on the horizon there?
Dion Forstner
So Julie, I think actually, it’s the integration of surgery, radiation and these therapies. Systemic therapies as we call them, whether it’s chemotherapy or immunotherapy. So as one changes, we need to change the other.
Unfortunately, it takes a significant period of time to work out what the right thing to do is because, obviously, we shouldn’t make big changes without good clinical evidence that it’s a safe thing to do. Now, really, for the last decade, the talk has all been about reducing or the intensity of treatment because we know that will equate usually to better function. Obviously, the risk of doing that is that we might go too low in intensity, and we actually start to impact on survival, which of course, we don’t want to.
And so particularly with HPV positive oropharynx cancers, we know that the outcomes for those patients are better than if they was an HPV-negative tumor. What we don’t know is how much can we safely reduce the radiation dose, where can we omit chemotherapy therapy and which patients can get away with just one type of treatment, surgery or radiation? Or do some patients actually need all three?
And this is a really difficult problem because we’ve all had patients who have HPV-positive tumors, who we expect will do well, yet they haven’t done well despite having very intensive treatment. And so you only have to have one of those patients to really make you extremely cautious about either reducing the radiation dose, or omitting chemotherapy, to reduce the side effects of treatment and so on. You realize that we have to tread very carefully forwards and not take leaps of faith.
Julie McCrossin
And so Dion effectively is there research happening now to see if it’s possible to reduce some aspects of treatment to do less side-effect damage and on what sort of patients that may be the case, but it’s still a research area?
Dion Forstner
Absolutely, so you know, there are now some studies coming out about either reduced radiation dose, those that have robotic surgery, can you omit radiotherapy afterwards based on, you know, how big their tumor was? How many of the lymph glands were involved? And so on.
At this stage, it’s all very early and so it’s really difficult because, of course, we want to make sure the patient has the best quality survival. But we just need to go very carefully.
Now as far as immunotherapy goes, so there are some studies happening of immunotherapy are being used with radiation, post radiation, in the in the curative setting. At this point, most immunotherapy, and the people that can access immunotherapy on the PBS in Australia, are those where unfortunately the cancers come back and there isn’t a curative treatment option.
But we are going to see immunotherapy moving into the curative part of treatment. But exactly how it fits and which is the right drug and the right dose and so on. We are still a fair way off the that.
Julie McCrossin
And I should let you know we do have, in this video series, an interview with two medical oncologists who will explain more about what Dion has just referred to. What are the common chemotherapies and what innovations are happening there? And what are some of the immunotherapies and work that’s being done there? And whether it’s necessary to pay for it, as some people do in order to try and give themselves a better chance of survival, or whether they can get it on the Pharmaceutical Benefits Scheme, the PBS, which basically means we get it funded under Medicare?
If you’re just new to all this, there is a lot to learn, but don’t worry. Cancer Council have an Information & Support Line 13 11 20…13 11 20 and you can ring them. They have clinicians on the end of the phone. And they will send you booklets. They’ll give you information themselves, or they’ll find the information that you need. And another great source of information is a website called the BeyondFive website. So it’s www.beyondfive.org.au. And we’ll be putting these words up around the page where you’re watching this video. And that is a marvelous source of information on head and neck cancer. It has patient stories. It has amazing anatomical diagrams, so you can understand where your cancer is and what the treatment modalities are.
Dion just before I asked you a bit more about BeyondFive, because I think it’s good to let people know about that, there’s one last question I have and then I’ll see if there’s anything else that you want to say. My question is this. We’ve interviewed A/Professor Richard Gallagher, an ENT surgeon, who you work with and who is with you, the co-host of this series.
And he certainly has indicated that for some patients who are getting the robotic surgery, the Transoral Robotic Surgery, in some circumstances, they don’t require radiation as well. Is the reality that if I went to a multidisciplinary team meeting with you & Richard Gallagher & everybody else, you sort of debate & discuss in relation to each individual patient?
Dion Forstner
Absolutely Julie, I mean, absolutely crucial, because we don’t actually know at this time exactly which patient can safely go without. There are some it’s clear, a very early, a small cancer in the tonsil that hasn’t gone anywhere else, that’s completely cut out. No argument from me. They don’t need any further treatment.
But there are a number where either it’s close to where it being cut out, there are some adverse factors when the pathology doctor who has has looked under the microscope has described these adverse factors that make us concerned & then we can be not sure. And actually, it comes down to hopefully achieving consensus in that meeting, when we have the pathologist there telling us exactly, not just what they’ve written on a piece of paper but actually where we can quiz them & ask them some more questions.
Julie McCrossin
And the pathologist are the clinicians that look at the actual tumour and give you detailed information about this particular tumour in my throat?
Dion Forstner
Yes. And look, we look into a whole lot of things, where the tumor is located. We’ve talked mainly about oropharynx cancers and so on today, but of course the head neck region extends really from the nasal cavity in behind the nasal pharynx into the pharynx and includes the mouth right down to just below the voice box. And each anatomical site we know they can behave quite differently to one or the other anatomical sites. And we talked abou the HPV-positive cancers versus the non-HPV positive…
Julie McCrossin
And if I could just explain for people who are new to all this, the two other main causes of cancer in your tonsils, tongue and throat can be smoking or heavy drinking. And the human papillomavirus is now coming up as another very major cause of these cancers in that area.
Listen, can I just ask you, we saw right at the beginning of this video Hans Ede, a patient who’s had radiation and surgery, and he was basically crying out for access to a multidisciplinary team to help beyond the five years. And I’ve had, in preparation for these videos, many emails and questions sent to me with very specific concerns about, you know, “I can’t open my mouth very much after the surgery”, “I still don’t have any saliva”, “I still have to use a PEG tube to have my liquid food only”. I could go on, you know, “dry mouth”, it comes up a lot.
Dion Forstner
and not to mention the dental problems…
Julie McCrossin
And the dental problems. And we do have an interview in our series with a very experienced dentist. So there are some people who, despite all the effort of the team, have prolonged and serious functional and side effect issues. Do you think we could increase access to rehabilitation with a multidisciplinary team? Is that a still-to-be-done thing in this area?
Dion Forstner
Well, I think the key people that are required are those that attend multidisciplinary meetings and so it is a point to at least have access where, you know, we can take patients along that we’ve seen in follow up that have these problems. I think though there are a lot of challenges there. As people are longer out from treatment, we tend to see them less frequently. We don’t necessarily appreciate as well, because we’re seeing them less often, the troubles that they’re having. And so we don’t always help them navigate to where they actually need to navigate to.
Julie McCrossin
What it feels like, if I might say as a patient, is that almost like at five years, there’s a kind of a tape in some sort of race, and we breast it. And then you’re all so busy with the acutely ill people who are still in that early multi-checking phase to check that we don’t get recurrence, that we just get a lot less attention.
Dion Forstner
Yeah, I mean, I agree. And I think the whole survivorship space in cancer is one that there is a lot more discussion about now. The focus has not been on survivorship in head and neck cancer so much. But, in fact, I would argue that is where it should be because patients with head neck cancer often pay close to the greatest price in terms of long term problems related to their therapy.
So. not just psychological, but very significant physical problems and we can do better with that. And I think, you know, Hans highlights that really that people he can be really appreciative of the care that he got.
But, you know, when it comes further down the track, accessing the system, we know how hard the healthcare system is to navigate and navigating to the right people. Especially if it turns out it’s a problem that isn’t one dealt with by members of that multidisciplinary meeting, but other specialists. That can be really hard to know. Who is the right person? Who is the one that’s going to really say, “Yeah, I can see what the issue is here” and work closely with the previous treatment team to make sure that that patient gets optimal care. And that’s a real challenge, Julie and look, I think, you know, dental is part of really, you know. It’s probably the biggest challenge of all of that because of the lack of funding of dental.
Julie McCrossin
You know, my goal…and we interview A/Professor Sharon Liberali, a special needs dentist from Adelaide, in this series…and I’ve told her that, before we both die, we have to get a special inclusion of the mouth for Medicare for head and neck cancer patients because we have such particular dental needs.
This is a personal passion.
Dion Forstner
Go for it Julie!
Julie McCrossin
But just before I let you go, and I’m looking forward to interviewing a very experienced speech pathologist and a dietitian to look at the issues of radiation therapy treatment from their clinical perspective.
In a nutshell, why should people go to www.beyondfive.org.au ? This BeyondFive website. Why should both clinicians and patients and family go to that website and have a look?
Dion Forstner
You should go and have a look at BeyondFive because it is internationally the most comprehensive website when it comes to patient information about head neck cancer. This information, it was identified that such a resource was missing and a huge effort has gone into this. It has hits from all over the world now.
It is it has the cancers broken down into all the different areas. It talks about all the different treatments. It has great animations on there to explain the anatomy and what can be done. It doesn’t just deal with cancers of the lining of the of the mouth and head neck region, but also salivary gland cancers and skin cancers.
And so it’s all in one spot. And it also has contacts that you can get too. You can see, you know, Is there a patient support group in the area that you live in? Or maybe there isn’t, but there’s one you can contact. And so it is a great resource for patients with head and neck cancer and a very reliable one because we know out there. You know, there’s a lot of sort of unreliable information. It’s hard to find that one place.
Julie McCrossin
Look, Dion, thank you so much. And, as you can hear, BeyondFive is a great resource for you. As is Cancer Council 13 11 20. It’s a free call all across Australia and we’ll put into our material around this video, the number you can ring in New Zealand. So thank you for watching this program about radiation therapy, but don’t go yet because I’m about to introduce you to a speech pathologist and a dietitian in just a moment.
End of transcript