The Founding Sarcoma UK – Sarcoma Talk #7 with Roger Wilson

Shushan Hovsepyan: Hello everyone and welcome to our Sarcoma Talks on OncoDaily. I’m Shushan Hovsepyan, a paediatric oncologist and editor-in-chief of OncoDaily Medical Journal, and today it’s my pleasure to welcome Roger Wilson, who is the founder of Sarcoma UK, the man who started it all. Hello, Roger, how are you?

Roger Wilson: Fine, thank you, Shushan. Thank you, it’s nice to be here.

Shushan Hovsepyan: Nice having you here, and let’s start from the beginning. Can you introduce us by sharing your journey? How did your battle with sarcoma start, and what are your thoughts about the whole journey?

Roger Wilson: Well, it’s now a long journey. I was first diagnosed in 1999, so 25 years ago. I had a lump on my lower left leg, and everyone said it was a cyst, so a surgeon went in with his knife to deal with it as a cyst.

It was just day surgery, and I knew the moment he put the knife in, the atmosphere in the room changed, because what he found was not what he’d expected to find. He took the lump out. It was then looked at by a pathologist who came up with the diagnosis of probably a leiomyosarcoma.

I then had follow-up surgery to sort the area of the tumor out on the basis that it had been a leiomyosarcoma, and the surgeon was convinced he’d got everything, clean margins, and yet nine months later, my tumour recurred in the groin. I had further surgery to remove lymph nodes, and then it came back again. I went on to a clinical trial of chemotherapy, which was a study which was comparing the first line of chemotherapy for sarcoma, which was doxorubicin, with the second line that was widely used, and two different routines of the second line treatment.

I, in the randomisation, got one of those experimental treatments, one of the phosphamide lines, and rather to everyone’s surprise, I responded, and my tumours were cleared. When you look at the results of that clinical trial, which was eventually published in 2007, in the data there is one person listed as a leiomyosarcoma with a complete response, and that’s me. But everyone knows that that is not the way leiomyosarcoma behaves.

So it was no surprise to a lot of people when, seven years later, I was developing new tumours in my leg around the area of the primary, that a biopsy revealed that they were myxofibrosarcoma, not leiomyosarcoma. So I had eight years, effectively, with an incorrect diagnosis, and what’s more, a treatment which was based on an incorrect diagnosis. That particular occurrence resulted in an amputation in 2007.

I had further occurrences with the groin tumours in 2010 and 2011, followed by radiotherapy, and then in 2013 I had lung metastases, which were diagnosed early by accident because I was being treated for something else, and the scan had picked them up, and the radiologist who had worked on me before thought there was something strange, so they went further into it. I had a CT scan, and there there were oligometastases, and I had them treated surgically, which was in 2013, and I’ve had nothing since. So I’ve been through a rolling journey of treatment, which is interesting, to say the least.

Shushan Hovsepyan: Yeah, that’s a very long story, and I imagine that it was very challenging, sometimes frustrating, but the results are very motivating, especially the one that you mentioned about the clinical trial, that is really very interesting. So building on all of that, what inspired you to start Sarcoma UK, and also can you tell us about Sarcoma UK, what is it, what is it doing?

Roger Wilson: Well, we started Sarcoma UK in 2003. I’d recovered from the chemotherapy, and had started to sort of get a little active in the world of cancer as a patient representative, and I went to a meeting in London, the first time I’d gone to a national research meeting, and met met in that meeting were four oncologists, all of whom became good friends, and are good friends, and all of whom are basically very clever people, and one of them in particular, Professor Ian Judson, said to me, one of the things that’s missing in this world of sarcoma, is a patient-led charity, you know, to represent the patient voice.

Excuse me, and I took this on board, and at some point in probably early 2003, my wife and I were sitting down around the kitchen table, talking about all the things that we hadn’t been able to have as patients, which today you would expect to have.

The information we’d been given was minimal. Most of the information I’d gathered came from the internet, which I was an early user of. We had no support.

There were no nursing support around the treatment areas that we had, no ongoing follow-up, or very little ongoing follow-up, that was meaningful in terms of supportive, you know, it was a little bit of clinical follow-up certainly, but that was alla

And it also occurred to us that if we could follow up the comments, the comment that Professor Judson had made, there’s the opportunity to influence doctors, and influence the way that sarcoma is treated, because basically no one was doing it, therefore everyone is going to listen to a good voice when it comes forward, and that of course is what happened, and how Sarcoma UK evolved.

We developed an information bank, we created a newsletter, we created leaflets, which the clinical teams could give to patients, first time they’d ever had meaningful accessible information.

They were fairly dense little books, but you know, people don’t read that, they want something they can look through and take on board in four or five minutes when you’ve just been diagnosed, you don’t want to sit down and read a great big tome, and of course once we started, once our head was above the parapet, I started getting invited to go to meetings.

And one of the most influential meetings I went to early on was the development by NICE, which is one of our main healthcare regulators in the UK, to develop guidelines for sarcoma treatment, not actual clinical guidelines, but guidelines to the NHS for how they should structure the treatment of sarcoma, and those guidelines are still in use today, 20 years on, which is great.

So that’s how Sarcoma UK started, but then, you know, gradually we got a clearer set of ambitions and a clearer set of sort of relationships, particularly with doctors, and you know, things have evolved from there.

Shushan Hovsepyan: That’s wonderful and a very inspirational story. Usually we doctors are doing our clinical and research work, but top of that, the patient voice is the most important thing, and actually the work that you are doing is wonderful, and let’s continue about the current initiatives and projects being undertaken by Sarcoma UK, and how do they aim to impact the sarcoma community?

Roger Wilson: Well, the key areas are research, support it, and where possible, fund it, because, you know, funding research into sarcoma, particularly academic research into sarcoma, is quite challenging. There’s advocacy, particularly around raising awareness of sarcoma. It’s rare, you know, around 1% of all cancers.

People don’t want to know about it, out on the margins, but we need to ensure that people are aware of it, and so that when the messages come through about need, and what patients would benefit from, you know, there’s a background against which they can be assessed and judged. There’s the need for support, you know, I mentioned that. Very early on, we started receiving occasional phone calls from patients who were not getting the questions they wanted to ask answered, and, of course, a lot of time we can’t answer them.

We can tell them how to go about getting an answer, but we can’t necessarily answer them, and there’s a lot of learning there to judge, and a lot of reading to do, because you have to keep your information up to date. You have to be scanning the journals for articles, which may be significant. They may only be significant to one patient, but that one patient matters.

Yeah, they’re critical, and then, of course, you need to fundraise in order to be able to afford to do all this. So, the Sarcoma UK today is built around, you know, those three sets of priorities, support, awareness, advocacy, you know, which are basically the same things, and research, and there’s a big fundraising commitment, and, of course, a good percentage of what the charity raises funds is spent to arrange fundraising, and that’s a very clear management challenge, too, keeping that under control.

So, the team that we brought into the charity initially in 2011, probably come onto that in a minute of how we grew to that, has evolved over those years.

We’ve had two very, very good chief executives. Our chair of trustees has usually been a patient or a carer of a patient, and they’ve been very able people in their own right, quite often with a, well, in one case, a very senior lawyer. In another case, a chief executive of his own company, quite a significant company.

So, the contributions of the top tier team, if you like, have been absolutely critical in driving direction, ensuring that the priorities are maintained, getting the right people in place to do the work that’s needed, and I stepped back in 2011. I’ve watched all this happen. I still do work for Sarcoma UK as a volunteer, but only as a volunteer.

I have no influence over the way the charity has evolved and the directions it’s taking, but I fully applaud what they’re doing.

Shushan Hovsepyan: That’s really wonderful, and you mentioned a lot about what Sarcoma UK is doing, but I’m sure that there are some things that you are mostly proud of, and I would like you to elaborate that a little bit more.

Roger Wilson: Oh, yes, there are some very fond memories, very definitely. I think probably one of the earliest ones, it was when we, the very first time we ran a British Sarcoma Group conference. Now, the British Sarcoma Group is the, essentially, the educational and collective charity for the sarcoma professionals.

It’s run by, now run by the professionals, but when it started, I effectively ran it alongside Sarcoma UK with the support of Professor Judson, again, and Professor Rob Grimer from the Royal Orthopaedic in Birmingham. They were the two principal guides, and the first time we ran their conference was in 2005, and it’s memorable because it brought together the clinical specialists for the first time, and so there are lots of fond memories around that particular event. Then in 2009, I think it was, we gave our first research grants.

That was just really, really wonderful, and the lovely thing is that all the leaders of those studies are still working in sarcoma, either as doctors or scientists, and still doing research, so it’s, you know, that’s a fond memory. We picked the right people, and they started doing things for us, with us, rather than for us, without us, which is beautiful. Then I picked the restructuring of the charity when we moved it to London in 2011.

We’d been blessed by getting a philanthropic donation, a very significant donation, and the donor had agreed that we could use this money to restructure the charity and build capacity in it, and that protected fund, if you like, lasted several years.

It enabled us to employ some people that we wouldn’t otherwise have been able to employ to do things that we wanted to do, so from 2011 through to 2014, 2015, the charity moved very, very fast in evolving and developing and getting things running in new and different ways, so that moment in 2011, we actually had a launch of the new charity in early 2011.

And Professor Ian Judson, sorry, not Ian Judson, Professor Mike Richards, who was the National Cancer Director, came and did a sort of a formal opening and a talk for us, and to have someone of that national significance in such a tiny charity, in such a tiny area of cancer, was really quite special, and then since the charity has been evolving, I think the one thing that really stands out for me is the launch of the support line.

I think that’s eight years ago now, but one of the leading sarcoma nurses was looking to restructure her life, having married and children and all that, and we were looking to get a telephone support system running in Sarcoma UK, and Sam came and joined us, and it grew from there, and we have four wonderful, wonderful people, healthcare professionals, two of them have been very senior nurses involved in sarcoma treatment. One is a midwife, but she has bereavement experience, and that’s very valuable.

It’s a very valuable set of background contexts to have, and she’s learned about sarcoma and knows it backwards, and the other one, the most recent to join us is a radiographer, and she has treated sarcoma patients as well.

So there’s a range of different skills there and experiences, and they’re talking to several thousand people a year now, patients, carers, sometimes siblings and children of patients, to support them and give them advice and help them get the understanding they need to make decisions, or just being somebody to talk to, somebody knowledgeable to talk to, and that’s incredibly valuable. You know, it’s all about people at the end of the day, and the support line is all about people, which is great.

Shushan Hovsepyan: You are speaking with so much enthusiasm and excitement that no wonder why Sarcoma UK succeeded so fast, and I’m sure that next to success there were a lot of challenges, and especially when you are setting up a new thing. Can you tell us more about the initial challenges and how you overcome them?

Roger Wilson: Yes, well, I think the challenge that every small new charity faces, whatever area it’s working in, is funding. How you can get funding together which allows you to separate yourself from the other things that you’re doing, on the one hand, but also gives you the money you need to fund telephone lines, or new computer, or print leaflets, print a newsletter, all those sorts of things, they cost money.

You know, back in 2003, you know, the internet wasn’t widely used, the smartphone hadn’t been invented yet, you forget how different things were, and you know, a lot of our money, the money that we raise went on printing, which seems extraordinary today when all you do is stick something on the internet, but you know, that is part of the world of change, isn’t it?

The other big challenge, and it still goes on, is getting that word sarcoma into people’s vocabularies, and getting them to, even if they’re aware of cancer, even if they work in cancer, sarcoma is, as I said, off on the margins because of the rarity. For general practitioners, family doctors, they’re probably not going to see more than one or two patients in their whole career, and how are they going to recognise them? What skills do they have?

What knowledge have they got to help the diagnosis? You know, those are all critical questions for us as advocates in sarcoma, and part of all that is building the personal knowledge is a challenge, because you need the personal knowledge in order to gain credibility as an advocate. You know, I need to be able to go into a meeting of doctors and identify the right questions to ask, identify the points that I need to raise, which are relevant to the direction of travel of their conversation.

I need to be able to perhaps change the direction of travel of that conversation, and the learning you go through is astonishing. It never stops. You know, I’ve been in a meeting of doctors discussing whether a clinical study should receive funding or not, and I actually know more about sarcoma.

I know more about its clinical treatment. I know more about the detail of some of the therapies that are used than any of the other 12 doctors, other 12 people in the room, but convincing them that I can speak authoritatively about sarcoma, because they’re doctors and I’m not, is a huge challenge.

Shushan Hovsepyan: Yeah, that’s true. That’s very true, and you said that you stepped back now and you are working as a volunteer for Sarcoma UK, but I’m sure that you have some future goals for Sarcoma UK. What are your vision for the charity?

How will you envision that?

Roger Wilson: Well, you know, I think the way I’ve described Sarcoma UK and me, the relationship I have with it, it’s quite clear that I have no direct influence on the way it develops its own vision and direction, but I do talk to them. I talk to various members of the team, as you know, the way you came to contact me. I talk to the chief exec.

I talk to some of the trustees from time to time. So I’m saying things which hopefully influence or are taken into account when they’re making decisions, but I support what they’re doing. I’m not someone who’s going to be very annoyed because they don’t pick up a particular thing that I thought about.

You know, there are many other opportunities for getting my little concerns aired in in different ways and not just with Sarcoma UK. And sort of the ambitions for me personally in this are, you know, I’m, as you can see, getting older and I just want to stay active and involved as long as I possibly can and hopefully will have the wisdom to step out when I can no longer contribute effectively. So that’s a challenge too.

Shushan Hovsepyan: I’m sure that you will always have a capability to contribute a lot with your excitement. And what are your dreams about the future research and advocacy for Sarcoma patients?

Roger Wilson: Well, it’s a rapidly changing world, isn’t it? I’m not sure that I really want to leave anything tangible behind. What I want them to to be constantly aware of is the message that I hope keeps coming through, that it is actually all about patients.

You know, every patient is a human being. They’re an individual and they need to be seen and treated as individuals. Whatever the systems and technologies of the moment are, whatever’s evolved, robotics, personalized medicine, you know, all these things, they’re great.

Move them forward. And I will have a voice in helping them move forward, hopefully. But I want the fact that I’m focused on patients and how they’re going to benefit from the technology.

I’m not fascinated by the fact that widget X and widget Y interact with one another to achieve a certain particular kind of cut in surgery. That’s not me at all. That’s down to the people that are doing the surgery.

I want them to be focused on the patient as well. And that just brings up the point again, I think sarcoma research has particular challenges because of the rarity of the disease. And I hope that Sarcoma UK and the Sarcoma Patient Advocacy Network, the global network, and all the other sarcoma charities that there are around the world, and we know of over 70 now, we hope that they can all help overcome the challenges that the future will bring.

And I think the one thing I dread is that cures are found for the more common cancers. And no one actually seeks the similar technology for sarcoma. And for sarcoma to be isolated in that kind of way, would just be a nightmare.

Shushan Hovsepyan: Yeah, that’s reality. And switching gears a bit, how do you define leadership? And what qualities do you believe that are essential for effective leadership?

Roger Wilson: I think the key things are listen, listen, listen. And guess what comes next? Listen again.

You’ve got to take on what other people are saying. Leadership is not about waving a flag and going out and saying, follow me. You know, that’s the leadership of fiction.

You listen, you read, you consider carefully. But you have to be decisive. But you also have to be able to take on board the evidence which says you need to change, and then to make change happen.

So it’s a constant listen, listen, listen. You need to be clear about what you want people to do. And you have to have their trust, that you know, that they are capable of doing it.

And that trust issue is a big one. And part of it is you share with them what you’re going to do. And you show them that you’ve achieved what you’ve set out to do.

And hopefully they will then be showing you what they have achieved, which was agreed beforehand. So it’s, you need to be calm, you need to be rational, you need to listen, listen, listen, take people, take people, you know, and trust people. And ultimately, you always say, thank you.

That’s so important.

Shushan Hovsepyan: Yeah, that’s wonderful advice, actually. Thank you for that. And how do you balance your time between your personal life and your extensive work with patient advocacy within sarcoma organizations?

Roger Wilson: With difficulty. I have a very active local life away from sarcoma. You know, I live in a very small town out in the distant parts of England.

And it’s a good community. And we’ve been part of it for 40 years. So it’s, you’re right, it’s a challenge.

And of course, I have three daughters and I have five grandsons. So I have family as well. So diary management is a skill I have yet to acquire.

Shushan Hovsepyan: Wonderful answer. And lastly, what are three books that you would recommend to our listeners that could make a positive impact and why you have, why you think that they have significant impact on you?

Roger Wilson: Well, when you told me you were going to ask this question, I sat down and I had a long hard think. And you may be able to see I’ve got a bookshelf behind me, which has got many of my most treasured books on it. So three books.

The first one I’ve picked on is The Lion, The Witch and The Wardrobe by C.S. Lewis, which is a children’s book. But it’s also a very deeply philosophical book. It’s about surmounting the seemingly unsurmountable, adapting to unexpected circumstances, but always being constant in how you approach life and how you approach the objectives that you have.

And I actually have a first edition of it on the shelf behind me, which was given to me when I was five years old. And as a first edition, although my copy is now quite tattered, it’s a very sought after book. And then I thought, you know, you asked about leadership.

One of the great leaders of history, certainly one of the greatest leaders of British history, was Admiral Horatio Nelson, who won as the leader of the British fleet in a very huge battle in 1805, which effectively stopped a lot of Napoleon’s ambitions. And he died in that battle. Now there are many biographies of him now, but one of the first of them was written by a lady called Corolla Roman.

So Corolla Roman’s Nelson was very factual. It doesn’t theorise, it doesn’t speculate about what he might be thinking. It just tells you what he did and how he approached things and how he met with his captains before that last great battle, and how he put to them that he wanted them to do something that they’d never done before.

He led them into a battle when none of them quite knew what to expect. And it was an overwhelming victory for him, even though he didn’t live to see it. Now Corolla Roman’s book was written in 1947.

I think I’ve probably first read it in the late 1950s. And I found that a very inspirational book, because it was just very clear about how Nelson behaved throughout his career. And then the third one, that becomes more challenging.

I need to do something which is sort of a bit contrasting with the other two. And I go back again to a book I probably first read in the 1950s. It’s not a book, there are four of them, or I’ve got four of them, may even be more.

They’re the Don Camillo books by an Italian writer called Giovanni Garesi, who they’re obviously translated into English. My Italian is non-existent. And they’re the stories of a Catholic priest in a small town in the Po Valley in the late 1940s.

And his friendship with the local mayor, Poponi. And Poponi is a communist. And communism and Catholicism obviously at that point in the history of Italy were politically diametrically opposed.

But these two were great friends. Poponi and Don Camillo had a history of working together. They fought together in the resistance during the war and they knew one another extremely well.

So the story is the conflict between two cultures expressed through these two men. With the background of Don Camillo, his mentor was the Christ on the cross in his church who spoke to him. Obviously this is a metaphor, it was his conscience speaking to him.

We understand that. But it’s lovely because you get Don Camillo behaving, doing things. And then the Christ on the cross asking him whether he’d done the right thing, never telling him he had done the wrong thing.

The Christ on the cross suggested that he might consider this in the next thing he does. He doesn’t tell him to go and do it. And so you get this guidance for Don Camillo’s behaviour.

And at the end of each story, each one is a book of short stories, at the end of each short story Don Camillo talks to the Christ about what happened and what he had achieved. And obviously he’s answering to his own conscience. His conscience is questioning him and saying, did you do the right thing?

And he’s answering. They’re delightful stories and you get to enjoy the characters that are written about as part of the stories. But ultimately it’s about behaviour and your own conscience.

Being able to ask yourself whether you did the right thing and being able to be honest with the answer. So those are three books to consider.

Shushan Hovsepyan: Thank you so much for sharing that. I’m sure that our listeners will find that you explained so well that our listeners will find that books in the bookstores. I’m sure.

Roger Wilson: Probably the second hand bookstores.

Shushan Hovsepyan: Thank you very much, Roger, for your time and thank you for sharing your experience and your thoughts. I think that it was a wonderful discussion and one step also forward to raising awareness of sarcoma. Thanks a lot.

Roger Wilson: It’s a pleasure. Thank you. Thank you for asking me to have this conversation.

It’s been lovely. Thank you.

Shushan Hovsepyan: Pleasure is all mine. Thank you.