VIDEO: Dr Richard Scolyer speaks on his fight with brain cancer

SARAH FERGUSON:  Richard Scolyer, welcome to 7.30.

RICHARD SCOLYER: Thank you very much.

SARAH FERGUSON:  First question, how are you?

RICHARD SCOLYER:  I feel good and happy. Obviously going down this brain cancer path, it's been going now for roughly two and a half years and to still be here and able to function in a way that we can have a chat today, fills me with some happiness and brain cancer often pursues depending on what part of the brain is affected in ways that restrict you on what you could do. 

And I've certainly got some restrictions about what I can do, but the fact that we can have a chat today, I'm delighted to be here.

SARAH FERGUSON:  Are you still treating the cancer?

RICHARD SCOLYER:  Yeah, absolutely and I think there's a standard for people with brain cancer. 

Unfortunately, the type of brain cancer that I've got is an aggressive sort of tumour. There's all different ways that it's subclass, but roughly 12 to 14 months is the median or average survival and the suggestion that came from my colleague, Georgina Long, who worked with me closely at the Myeloma Institute suggested you want to, this is not her words, but have a crack to try some of the things that we've pioneered in melanoma and have worked in many other cancers, try and do some of it in brain cancer, which is somewhat risky. People had suggested maybe drops your survival by 50 per cent.

SARAH FERGUSON: That's a lot.

RICHARD SCOLYER: Yeah, well, it's not that much when you're only predicted to be here 12 months.

SARAH FERGUSON: Sounds like a lot.

RICHARD SCOLYER: Yeah. But there's a great team of people around the world who are working on this field, and we are part of it in Sydney. And I guess as the largest melanoma treatment and research centre, it gives us knowledge and experience of what you can do. 

And as someone who's led clinical and research work, you can weigh things up. And talking with Georgina, my wife Katie, about where to go, it felt right. So that's the path we went down. 

And the main thing that was different is that I had treatment with some drugs called immunotherapy that helps your immune system work, and we know from melanoma and now many other tumours that they're more effective when there's given more of it, when there's more tumour on board. 

So that's made a massive difference in melanoma and hadn't really, we knew about a lot of data, produced a lot of data that was just being released, so it seemed like worth a shot and see if we could make a difference. So that's what happened.

SARAH FERGUSON:  And how much has that work that was done with you, how much of that is going to be applicable to other people? What have you learned that will change, that is changing the way we think about brain cancer?

RICHARD SCOLYER: That's a great question. I guess the thing that I didn't explain was by having the therapy, therapy immunotherapy before the tumour was knocked down, there's a risk that it might take off and be a lot of problems, but we know from other cancer works that it's more effective by getting it early. 

So it felt right when there'd been nothing that had improved survival in more than 20 years to try something that might make a difference.

SARAH FERGUSON:  And you are saying, just so I'm absolutely clear, you are talking about the immunotherapy crucially comes before surgery?

RICHARD SCOLYER:  Correct. That's exactly correct and as far as we were aware at the time, it hadn't been tried like this. 

But I'm only one patient, we can generate science that's attractive, that is it worth pursuing this path with more rigour to see if it makes a difference in a large group of patients. So as one patient, I've generated some scientific data, but it doesn't prove that it works. A proper trial needs to happen.

SARAH FERGUSON:  So why has there been so little progress with brain cancer? We've seen the extraordinary advances that you and your colleagues made with melanoma. Why not brain cancer? Why does is it so seem to be so stuck?

RICHARD SCOLYER:  That a brilliant, brilliant question to ask and it's not a simple answer to give. I can give you my understanding of science, why it's more difficult, but there's a few things in my mind that are logical. 

The fact your brain is inside your head with bony skull all around the outside of it. So to do research you don't get this opportunity to take big amounts of tissue to do research on. 

But the major one is that virtually all of the cells that are in your brain are integral, that they make your brain work, they make you so multitask that you can do things at the same time.

And we know a lot about different parts of the brain and what functions where, but to understand it all is very, very difficult and where my tumour started out was a part of the brain in the temporal lobe. And it's in a spot where clinicians need to make decisions about what's the best treatment, what's the least risk for you to still be able to manage and be part of life. 

And luckily for me where it was, I can still have a chat with you and keep contributing to society in many ways. 

SARAH FERGUSON: You've given us so much to individuals, to the community, to science, to research so much over your life. What do you want us to do now? Where should we putting money to advance the causes that you’ve been so profoundly involved with?

RICHARD SCOLYER: Well, to be honest, we need to make a difference. We have made an incredible difference of improvements in outcomes of life and disease through new treatments. 

But unfortunately, brain cancer is at the bottom of that pile and it hasn't changed over a period where nearly every other cancers, there have been great improvements. 

And we talked before about the challenges of brain cancer. We need to work as a team to organise things that by working together you can have a way bigger impact that will change it. People need to be organised, different skill sets and working together. And I see improvements that are happening, but it's not enough. 

SARAH FERGUSON:  And that's state funding, federal funding and individual philanthropists, I assume? All of them. All of us. 

RICHARD SCOLYER: Yeah, absolutely. Ultimately, so those public and private organisations all need to pitch in. And I feel, I've felt some of that from the public, but brain tumour funding for where it is, the commonest cancer in people who are less than 40 years. 

And the research that's been supported and pushed forward is not at the level that it needs to be in my, well, I say humble, but it's not humble, in my opinion. This needs to happen. 

And ultimately government needs to be number one, pushing the effort in that direction, giving research money. And we've had some meetings and pushing things forward and they have funded, but we've got to push this forward to really make a difference. And the community gets behind it when they hear and understand it.

SARAH FERGUSON:  Is that part of the reason why reason for being here is that you have to choose what you do with your time. Is that why you are still pushing that message because it is lagging, it does need better support.

RICHARD SCOLYER: Again, very well worded and absolutely correct that I have experience in doing this sort of work way before I got brain cancer and it seemed to help. 

It's a different road for me now as a patient. I could see that a lot of work that is difficult, but it hasn't been done, that can be done, can be better organised to make a difference. 

It needs funding and coordination for that to happen. And I really want to see this happen at all levels but particularly pushed along by our federal government and state governments to make a difference.

SARAH FERGUSON: Richard, Scolyer, you've given us all so much. Thank you for talking to us as well.

RICHARD SCOLYER: Absolute pleasure to do this. Thank you very much.