In January 2024, Professor Richard Scolyer and Professor Georgina Long were named Joint Australian of the Year for their pioneering melanoma research. Richard has dedicated his life to cancer research and treatment, but his world was turned upside down when he was diagnosed with brain cancer in 2023.

Determined to save her friend, Professor Long developed a treatment for Richard’s cancer based on their breakthrough melanoma immunotherapy. “It was scary what I was suggesting. Richard has become patient zero for a groundbreaking immunotherapy treatment,” she told TDA last year.

Australians celebrated with Richard when he announced that he was 12 months cancer-free in May 2024. More good news came in November when he made it to 18 months with no recurrence of his tumour. Since then, we’ve held our breath, willing and waiting for the next positive update, but Richard recently confirmed his latest scans showed some changes in his brain “which could be an effect of my previous treatment or recurrent brain tumour,” he said.

Richard underwent “complex surgery” earlier this week to determine the nature of these changes. In a post to Instagram, he said he’s now focusing on recovery, “and will share more updates when I am able.”

Like so many others, I haven’t stopped thinking about Richard and his family over the past few weeks. Last year, I was lucky enough to interview him when he visited the TDA office. As we await his next health update with collective apprehension, I wanted to revisit that conversation for today’s newsletter.

Emma: Professor Richard Scolyer, thank you so much for joining us today. 

Richard: Thanks, Emma. It's a delight to be here. 

Emma: How are things in your world right now? 

Richard: Pretty busy, I guess, as Australian of the Year… For Georgina Long and I, we've been using it as a platform to try and get through our messaging about melanoma [and] prevention. So, prevention is better than cure. Getting through sun-smart messaging to people is really important for all Australians, but particularly for young people… It's actually the most common cancer in 20 to 39-year-olds in Australia… If you get it early, about 90 to 95% of people will be cured, so we want all Australians to know the skin they’re in, and if you see something new or changing, go and see your doctor and get it checked out. 

Emma: You've been so busy doing all this advocacy work, but you've also been navigating your own life-changing diagnosis, one that you've shared very publicly with Australians. What has it been like navigating such a deeply personal challenge in such a public way?

Richard: It’s been a tough journey. I guess I was diagnosed about 18 months ago and it turned my life and my family's life upside down. To be diagnosed with a cancer that is supposedly incurable, the worst type of glioblastoma that I've got is… yeah, it was devastating. As a cancer doctor, a pathologist and a researcher, I understand these diseases and their implications. 

We've talked about melanoma… For people with advanced-stage melanoma (about 5% of patients) 10 or 15 years ago… most people were dead within a year. The five-year survival rate was less than 5%, but because of advances, now, more than 50% are alive at five years. Differences can be made. But to then find out you've got a cancer that's…one that's at the bottom of the pile for survival rates? It’s a tough journey to go down.

Richard: I was actually receiving an award and word had got out in the medical community that I was having this battle. The president of the society reached out to me and said, ‘Can I go public with it?’ It felt like the right thing to do for me. I was getting hundreds of text messages every day from friends and colleagues around the world, so that was one part of it. 

The other part of it [was] to leave a legacy for my three children… And ultimately it's led to a memoir that I wrote with Gary Maddox. I know my kids and many friends and colleagues are proud of what they've read in it. 

Emma: How could they not be proud? I do wonder if being an expert in this field and knowing all that you know makes it easier or harder. Are there times when you just wish you could un-know everything, or go to a place of ‘ignorance is bliss’? Or do you feel empowered and motivated by that knowledge?

Richard: It's a great question and I think there are actually two sides to the coin. Part of it is [that] it's easy to understand what the diagnosis means and what's likely to happen, what sort of treatment options there are… [that] understanding of the process makes it easier. Emotionally, it's different for everyone. At times it's definitely something that I've found tough to cope with. I love my life, every part of it… But when I think about it, there are many other patients suffering a lot more than [me] so, you know, I can't complain.

Emma: I think you can. I'll give you permission to complain. I think the whole country would give you permission.

Emma: You've undergone a new treatment based on your own melanoma research. Can you tell us a little bit about that?

Richard: Yeah. To put it into context, the sort of cancer that I've got is called glioblastoma, and it's a type of tumour that has roots or tentacles that extend out much throughout your brain. It's virtually impossible to remove or treat all of the tumour, and that's why chemotherapy has been instigated and was used in a clinical trial about 10-20 years ago. For the subtype of brain cancer that I've got, [chemo] was shown to double your survival rate. For another type of glioblastoma, it triples the survival rate.

So, there are benefits in going down that [treatment] route, but with immunotherapy, the idea is you're trying to stimulate the body's immune system to be able to recognise the cancer cells and knock them off, but leave your normal brain cells alone. That's why it's so appealing to me in brain cancer. Immunotherapy suppresses all cells throughout your body. Obviously cancer cells are the ones you're aiming at, but it also suppresses the immune system. So if you give immunotherapy with chemotherapy, in my mind, the chances of the immunotherapy being effective are less. 

So [for me] this meant foregoing chemotherapy and in effect, dropping my survival time by 50%. It was a tough decision. My wife was on board, she's a doctor too, and Georgina [Long] was intimately involved. She's a world leader in immunotherapy. And in fact, she was the one who proposed [it]... This is bread and butter for our team. This is what we've done in melanoma and in some other cancers. So for me, that was something that I wanted to contribute, that the team wanted to contribute, to see if we could make a difference. 

Emma: I'm just trying to imagine the decision-making process of being given this life-changing news. You know the treatments, you understand chemo and how that could extend your life. And then there’s this unknown experimental immunotherapy treatment… How did you use your lived experience in the field of research to navigate that decision? 

Richard: It definitely influenced it, but… Georgina is the medical oncologist who's driven clinical trials in immunotherapy… She was the one who put it on the table and we both have been heavily involved in this field so she was supportive of going down this route. For me, it felt like the right thing to do.

Emma: You shared the milestone news that you'd been cancer-free for a year earlier in 2024. You’re not at 18 months. What do those moments mean to you, what’s it like hearing the news that you’ve reached a new milestone? 

Richard: I wasn't really expecting it… I guess it just fills me with joy that I'm still around and able to enjoy my life and we can have a chat like this today. The other thing that's really changed is I don't know how long I'm going to be here, but it makes me feel like I still want to contribute to society… to enjoy each one of those days, especially with my family. [They] have been incredibly supportive of going down this path… I hope it helps future brain cancer patients. 

Emma: I’m guessing it would be hard to walk that line between being realistic and pragmatic, but also having that hope and joy in those milestones.

Richard: I think for all cancer patients, hope is really important… and I certainly have got that. The question of whether this treatment is giving me hope for the future or not, no one knows the answer to that. 

Emma: Are you doing anything day-to-day now in terms of ongoing treatment?  

Richard: With the immunotherapy, I had 14 doses all up. The [treatment] that Georgina started me on was what's called ‘triple dose combination immunotherapy’ [TDCI]. It’s something that hasn't been used on many cancer patients ever. Recently some data was presented on 51 melanoma patients who'd had [TDCI] I think roughly half of them had side effects after one dose and had to stop. I've ended up having 14 doses. So I feel fortunate in a way but that's all stopped now.

One of the complications of treatment is that you have epileptic seizures. At some stages, I've had about 20 a day, but I'm on a whole series of drugs to maintain things and we're on a good mix at present. As far as the treatment of my tumour goes — until it recurs, we'll sit tight.

Emma: How do you look after yourself when you are sitting tight? How do you face the mental challenge of trying to enjoy the most out of every day without feeling like there could be a shadow behind you about to creep in and change things? That must be extremely hard to navigate. 

Richard: Those certainly are my feelings and I don't think I could have said it that well… it's absolutely true. For me, the things that I find most supportive are my family. I like exercising, I find that takes my mind, off things… I like working and doing research, but to be honest… work now is not the same as what it was before. I definitely miss [it] and the interactions that I'd normally have with my colleagues, who are also my dear and close friends.

Emma: What does family life look like at the moment? When you’re all together, how do you make the most of enjoying that time with each other?

Richard: At the start of [2024] we got a pet for the first time and I've actually always been the anti-pet person in the family. 

Emma: It's always dads who are anti-pet.

Richard: Well, it was partly because I love going on holidays with the family. But, we've got a pet dog, Cha Cha, a small, beautiful dog. The family absolutely adores him and he's a great addition to our life. 

Emma: You've reached those milestones, the 12-month mark, the 18-month mark, what's next? If we catch up again in a year or two from now, what do you want to be telling me about? 

Richard: Well, first of all, I hope I am here and can come back, but I think ultimately it's doing things with my family. That is going to be my biggest driver over the next period… I'm still going to keep working and, and contributing. I'm proud of the team I work with and, and also, the mentoring of staff as they come through the ranks. Because if you want to make a difference, you've got to assist people in what they're doing into the future. But obviously that's important for your own kids as well, to try and be there and feel their love and you give it back to them and have fun. 

Emma: Richard, they are lucky to have you. And we are so lucky to have had you as Australian of the Year. Thank you for everything that you do and everything you are continuing to do for so many people here in Australia and around the world.

You can watch Emma and Richard’s conversation in full on our YouTube channel here.

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On today's good news podcast, we discuss the First Nations tennis greats being honoured in Barbie form this International Women's Day, the history-making victories from this year's Oscars, and two scientific breakthroughs involving prosthetics and plastics.