For this episode of Karger’s The Waiting Room Podcast, we spoke with Roger Wilson. He is a sarcoma patient, patient advocate, founder of Sarcoma UK, as well as Honorary President and active Board member of the Sarcoma Patient Advocacy Global Network (SPAGN). We talked about his patient journey with soft tissue sarcoma, his work as a patient advocate as well as Sarcoma Awareness Month in July, with this year’s motto being “The importance of early and correct diagnosis”.

Since being diagnosed with a soft tissue sarcoma in 1999, Roger has undergone ten operations, chemotherapy and radiotherapy. He currently works with a range of organizations and academic research groups in the UK and Europe. Furthermore, he has honorary doctorates from the Universities of Sheffield and Lancaster in the UK.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

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Transcript

Good morning, Roger, and welcome to the Waiting Room podcast. Good to have you here.

Good morning, Alexander. It’s lovely to be here.

 

Now, first of all, could you please tell us a bit about yourself, your patient journey with soft tissue sarcoma and how this led to the foundation of Sarcoma UK and your activities as a patient advocate?

 

Well, I was diagnosed, first diagnosed with the sarcoma back in the previous millennium, in 1999. It was diagnosed as a mistake, which was then recovered by a second surgeon who worked to a proper diagnosis and did a proper recovery job. But then the tumor, which was on my lower leg, recurred in the lymph system, metastasis in the system. So I had further surgery, another recurrence, which wasn’t surgically treatable, and I had chemotherapy. So, in the course of 18 months, I had three surgical procedures and chemotherapy on a palliative care clinical trial.

Fortunately, that’s put me into remission, and it was another seven years before I had further problems. It recurred in the lower leg and I had an amputation at the lower leg. But then, three years after that, I had a recurrence in the lymph system and had further surgery, two operations, then radiotherapy. But, unfortunately, this didn’t hold it back either. I then had metastases found in my lungs, which is not a good indication for sarcoma patients. Fortunately, they were found very early and I had surgery with a very good surgeon in London who put me into remission again, and that was 2013. So that was after 14 years of treatment on and off, and I’ve had no further treatment since.

So, I’m very lucky. So that’s my personal journey with the disease. But it was in 2001, after I was recovering from the chemotherapy that I began to get involved with research into sarcoma. I first of all joined a local group. Nothing really much was happening. There’s a lot of talking and a lot of good ideas, but no real foundation for actually doing serious research. And I then joined the national group, which was run by the National Cancer Research Institute. And there I met several of the leading researchers and clinicians in Sarcoma in the UK and began working with them. It was one of them, Professor Ian Judson, who actually said to me one day: “One of the things we need in the world of sarcoma is a dedicated patient charity.” And that resonated with me. I don’t know quite why.

And it was in 2003 that my wife, Sheelagh and I sat down and said: “Well, we’ve got to do something about this.” And we started Sarcoma UK, as the legend has it, around our kitchen table. And it’s true. We started by creating a newsletter so we could reach out to patients and the specialist doctors around the UK happily distributed that newsletter. And then we found patients of course coming into contact with us. We had the funding to do more newsletters. We branched out into writing leaflets. There were information leaflets available to the clinicians, and then we moved into running support group meetings. We focused initially on GIST, gastrointestinal stromal tumor, which is one of the commonest sarcomas, and that was funded because of Novartis’ interest in promoting the drug imatinib for the treatment of that sarcoma.

And so we moved forward. I’ve been also involved at that time in the wider development of patient involvement in cancer research, working nationally. It all ground to a halt in 2007 when I had my recurrence and the amputation. I had to give up the national work. But Sarcoma UK became my primary interest. We worked with the clinicians on developing the British Sarcoma Group. We created a research charity which we called the Sarcoma Trust, and we were working on a very broad fund by then across the whole area of advocacy and so on with sarcoma.

The challenge, I suppose, came anew when we realized that if Sarcoma UK and the other things we were doing were really going to go anywhere, we needed to be based in London, and we lived, I lived still out in the West Midlands in a very nice part of the country. So, with working with the other patients that were by then involved with this, we created a business plan for a new Sarcoma UK. But we needed money to make it happen. And then we found ourselves with a philanthropic donation, and the donor very kindly agreed to allow us to use the money they were donating to us to develop the charity, move it to London, get some professional staff in, particularly on the fundraising side, so that in 2011 we relaunched Sarcoma UK, the new Sarcoma UK, if you like, bringing together Sarcoma UK and the Sarcoma Trust. GIST Support UK had by then been created as a separate charity so that also existed. And the British Sarcoma Group became a charity in its own right.

So, we suddenly had a spread of organizations in sarcoma and that vision that Ian Judson had of having a patient-led sarcoma charity was really beginning to take shape. And Sarcoma UK under professional management, first from Lindsey Bennister and then more recently with Richard Davidson at the helm, and some very good trustees and the chairs of trustees have been magical in in the way they’ve supported the executive team. We now have a charity which is raising around GBP 3.5 million a year and investing a large amount of that into research. It has started work on the helpline. now, I think. eight years old, which I think is the big, big step in terms of supporting, actively supporting patients.

And it left me free once when 2011 had come to start thinking about how I could do more work with Sarcoma Patients EuroNet, which we had created a few years earlier, but which was moving forward very slowly in a very considered way. We started it with 11 organizations as members. It’s intended to be an umbrella charity, allowing support groups and advocacy groups in sarcoma to come together and work together so that, you know, we can pull resources and we can use our energies in a collective way. And over the 15 years that SPAGN has been running, now it’s the Sarcoma Patient Advocacy Global Network, we now have some 70 member across the world, in most European countries, in America, Canada, Australia and some parts of Asia. And two members in Africa. It’s a start in these more distant parts of the world, but we’re getting there.

So, advocacy has been sort of welded into me, if you like, from the very beginning. And my activities as a patient advocates are right across the board. I still work on individual activities in the UK. I’m working on one clinical trial, for example, a surgical clinical trial. And at the other side I’m working with American advocates and developing a paper on a worldwide basis for publication to hopefully help move things on in every country in the world. So, it’s a it’s a wonderful life to be part of.

 

That’s excellent. Many thanks for the overview. That’s quite an astonishing story of the foundation of the association and what you did as a patient advocate. Now, I was wondering, especially since there are quite a few different kinds of sarcoma, why are they often overlooked?

Well, it’s, fundamentally, because they’re so rare that a family doctor – we worked it out, actually, based on the incidence statistics in the UK and Scandinavia –, but a family doctor is probably only going to see one patient in their whole career. And that’s, you know, astonishing. It’s only around 1% of all cancers. So, in our local family doctor practice, you know, I was diagnosed 25 years ago, but based on the incidence in the country there will only have been another eight patients in those 25 years diagnosed in that practice. In fact I know two or three of them, which is another factor.

So, the challenge is, first of all, getting people to recognize that the sarcoma is present in a patient and then, of course, you run into the issue of what kind of sarcoma is it, and why is it important to distinguish between sarcomas? But they can appear anywhere on or in the body, from the top of your head to the tip of the toe. Inside or outside. And they have different characteristics in terms of how they present so that some are very infiltrative and some grow in a more capsular manner, for example. They affect virtually any kind of tissue except visceral tissue. So, it’s connective tissue. So, the bones, muscles, tendons, nerves all can have sarcoma associated with them. So clearly there are then different genetic mutation characteristics as a result of that origin.

And of course, the mutations can often be individual to a single patient. Two patients can have what appear to be identical diagnoses of a tumor. But if you get into the mutational analysis, they may have different driving mutations or mixtures of driving mutations, and that presents huge challenges in terms of treating advanced disease in particular. Primary disease is always best treated with surgery. So, it’s a very complex arena for doctors to be in. And you can’t expect a general practitioner or even a general surgeon in a centralized hospital to be fully capable of handling them. They need specialist care. So, the challenge, again, is quite often getting patients to a specialist.

 

I see. And that nicely ties in with this year’s Sarcoma Awareness Month motto, I think, because it is “The importance of early and correct diagnosis”, which is probably key, as you mentioned.

Yes. So, one of one of the disturbing bits of data that came out of when we sorted out the registry, the cancer registry here in the UK, was the percentage of patients who were being initially diagnosed in Accident and Emergency. You know, they presented with pain, usually, in A&E and were diagnosed with advanced sarcoma quite often, basically untreatable. They were on a, you know, pathway which was not one that we want to see people enter. And even those that were treatable were, you know, often had a poor prognosis. So, it was about between 24 and 25% of all sarcoma patients were being diagnosed through that route.

So, you really have to then ask: “Why does that happen?” And it’s a very, again, very complex area to analyze. So the importance of early and correct diagnosis is essentially to get people treated as quickly as possible so that we avoid people being diagnosed with advanced disease at the time of their first diagnosis. That’s the key to it. If you look at the statistics for sarcoma, broadly speaking, 50% at five years are survivors. And if you look at why they survive it’s because they were diagnosed earlier and they had good quality surgery from people that knew what they were doing. And there had been supportive radiotherapy or chemotherapy, but generally speaking, the central plank of their treatment has been surgery. So, let’s focus on that. If we’re going to change the survival statistics, early and correct diagnosis followed by expert treatment is the key to it.

 

I see. I’ve also come across the Global Sarcoma Diagnosis Pathway Survey. Which role does this survey play in this regard?

Well, it’s going to help us understand a lot about the diagnostic pathways in different countries. We’re going to be able to look for commonality. You know, are there common patterns of behavior appearing, for example, from family doctors or from surgeons in secondary care who are going to likely be the first person referred to. They may or may not be specialists. In which countries is the route to a specialist easier than others? And that gives us a target for how advocacy in that country might develop. And, you know, overall, the data we’re going to get from this because we wanted to have as many respondents as possible. So, if you’re listening to this and you are a sarcoma patient, please look for this survey, the Diagnosis Pathway Survey, and fill it in, complete it for us. It’d be really valuable.

 

Now, what could be done to improve the survival as well as the quality of life of patients with sarcoma? You just mentioned the survey and how it could help. And I was wondering to which extent do digital technologies play a role there? And I’m talking about e-health, for example.

I think what’s happening around the digital world and the data world generally is potentially very exciting. I think if you want to look at the issue of data and improving survival and the quality of life, there are a number of areas which we really want to move on. One of the areas that isn’t where we need treatments is in this maintenance of remission. So, when a patient has surgery, some patients will get advanced disease. Sometimes that’s predictable because the surgeon wasn’t able to completely excise tumor tissue, for example. But in other cases, it’s just the nature of that particular sarcoma.

But if we had maintenance therapies which supported patients that were in remission from surgery, effective maintenance therapy that prevented recurrence, that would be a really valuable addition to the armory which our oncologists have. Now I’ve said that improving survival is probably principally about surgery, but patients do get advanced disease. So those are the patients we also need to find effective treatments for.

And that’s where I think the digital world supporting research, supporting the understanding of the genetic makeup of sarcoma and how we might be able to use techniques such as immunotherapy, which is only really just being explored with sarcoma, even though it’s extensively used now in other cancers. You know, how that can help improve the length of life and also the quality of life during that extended remission or extended survival. And here again, I think patients play a part because we’re nagging our researchers for doing much better quality of life reporting. Now, if patients report their quality of life, patient-reported outcomes, we get a better picture than surgeons or oncologists observing the patient and recording measures, whatever they are, from their observations. So, patient-reported outcomes are a key part of ensuring we understand what quality of life is and what it means.

And of course the best way of getting them is through people doing simple questionnaires, for example, on their smartphones or on the screen, on a web browser. And then you’re generating data, more data, quite often lots of data, all of which piles in and hopefully contributes to the picture. But we’re not, as a sarcoma community, actually collating all this data. We’ve got good data, for example, in cancer registries, and some of them are very open to research and we can get good data out, but we can’t match that data with the performance-reported outcome data, which a particular research study has delivered or which is coming from a follow-up study in, you know, hospital X. We can’t bring that all together at the moment. And we need that.

And the digital technologies, ultimately, if we can get hold of the data and create data hubs and mega hubs which allow data to be brought together and matched, we’re going to get a lot of information that we can use to help improve the life of patients. We have a very interesting study which SPAGN is involved with, which is called STREXIT 2, and it’s funded by the European Commission. It’s run by the EORTC, and we’re one of the partners in it. And STREXIT 2 runs alongside a study in retroperitoneal sarcomas called STRASS 2. So STRASS is actually about treatment, and STREXIT is about what happens to the patients that decide not to be treated in the clinical treatment trial, or patients that were not going to be treated in the treatment trial at any rate. Let’s get all their data too and let’s then match patients for analysis between the clinical study and the non-clinical observation study so that we build numbers.

And numbers is critical when you get to data analysis. And this treatment study is probably going to only accrue 500 patients in five or six years. So, it’s going to take a long time to get to any meaningful numbers. But putting it with STREXIT 2 and bringing the two sets of data together, we can hopefully get much more significant numbers. We can drive the statistics so that they do get to be significant, and we get a result quicker and more accurately from using data. The real world data of one group of patients and the research data of another group of patients. So, these kind of new ideas and new approaches are really important to the way we can develop and deliver better survival and quality of life for the patients.

 

Definitely. And you mentioned research now a couple of times. How do the results of the data you like to accumulate reflect on research or how does it improve research? And how important is research overall In the case of sarcoma?

Sarcoma is totally reliant on research. We can only move forward really through the efforts of the clinicians and scientists and patients who contribute to research and who undertake it. The issue of new drugs, new treatments, for example, is fairly simple to identify. It is quite straightforward in some respects and is of course coming largely from the pharmaceutical industry, although some work does happen in the academic research world. But it’s the wider picture of the world of sarcoma, which we also need to consider in research. I mentioned the study that I’m involved with here in the UK. That’s a surgical study using a new technique in surgery to hopefully improve the quality of the surgery and the clinical outcomes as a result. And that’s being watched very carefully by the whole world to sarcoma, because if that study produces a clear result that this technique is of value, people will be very quick to pick it up and run with it all around the world.

So, that sort of thing is really important. In SPAGN we’re also involved in prioritizing or trying to identify priorities in research. We have a major study underway which is coming through the Netherlands, where we’re looking at what patients regard as the priorities for clinical research and research into quality of care. So these sort of ideas are the way we’re going to move forward, the way we’re going to get better and deliver better outcomes for our patients.

 

Excellent. Now, in your opinion, which role do patient advocates and sarcoma community initiatives play nowadays as compared to ten or twenty years back when or even when you started it? And what needs to be done to further strengthen this position and to empower the patients even more?

I think the big thing that we can identify now is partnership. As patient advocates, we’re not there to stand on a platform and shout. You know, that might be a traditional view of advocacy. We’re there to work with other patients, other communities, and, most importantly in sarcoma, with our professionals, with our expert doctors. If we can work together, we empower them as well as ourselves. We learn, they learn, and we can start acting together.

And we’ve done this in the UK now for many years. It’s happening in Germany, it’s happened in the Netherlands as well. And in France there’s been some extraordinary things happening and, you know, they’ve done things that none of the rest of us have even been able to try. But that’s the beauty of watching the world of advocacy from a global position, if you like. So I think the key word is “advocacy is about partnership”. And we can work with doctors. We don’t have to work against them and we don’t have to shout at them.

 

I see. Now, and this leads me to my last question. So, last but not least, what are your plans for this year’s Sarcoma Awareness Month in July, what our Sarcoma UK’s plans and what are SPAGN’s plans? Maybe they are all the same, but I thought I’d ask.

They’re virtually the same [laughs]. Yes. The key issue is the importance of early and correct diagnosis and of initial treatment from an expert surgeon. Someone that knows what they’re doing, knows the different kinds of sarcoma and the kind of behavior, physical behavior that they can deliver. So, diagnosis is right at the heart of it. And in SPAGN we’re going to be quite active on social media. We’re going to have some special blogs on our website, including one, for example, thinking about how AI, artificial intelligence, is developing in the research world and the contribution that that might make to our scientific research community.

So we’re not narrow; we’re keeping some breadth to it, but it’s principally about awareness of the importance of that first early correct diagnosis. And Sarcoma UK has identified that. Bone Cancer Research Trust in the UK is following a similar line, and I think other sarcoma groups individually will also be taking that line as well. And hopefully SPAGN can help energize everyone to get that diagnosis survey out. That’s part of it. You know, we really want people completing that survey for us so that we can have a record. They’ll be anonymous so they don’t have to name themselves, but we want their data. Please.

 

Okay, that’s a perfect ending of the interview. Please take part in the survey, and thank you, Roger, for your time and for making this happen and for your insights. As with every interview, I’ve learned a lot, this time about sarcoma. Thanks a lot for that, and I wish you all the best.

Thank you, Alexander. As you probably gathered, I enjoy talking about sarcoma, so whenever you want to do it again, let me know.

 

Definitely. Thank you very much.

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