As a brain tumor survivor I count each day as a blessing. I was diagnosed at 14 and your chances are slightly better as a kid. Even then it came back at 16 again but now I do not even do checks anymore and I am 44 now.
People like Dr. Scoyler or my own doctor are always in my heart, we owe them so much.
Survival need not mean a happy life either. My brother had one before he could speak - at 1 year old. It was removed, but he has been suffering from epileptic seizures ever since.
Sorry to hear that :( In my case I only lost hearing from one side due to nerve damage, it also impacted balance in those early years but interestingly enough that improved a lot just by using the other inner ear.
My fellow Australians, I pen this letter as a final goodbye to all those I have had the immense privilege of loving, sharing life’s adventures with, working alongside and meeting during what can only be described as a life filled with happiness, optimism, opportunity and passion.
My intention is for this letter to be published upon my passing – as my final farewell. I’ve spent the last three years being open and honest about my journey with glioblastoma (brain cancer), in part to be transparent about what cancer patients and their families go through, and in part to provide hope and inspiration that we can and should continue to push boundaries to propel the cancer field forward.
Having dedicated my 35-year working life to patient care, cancer research and improving lives, I wanted to keep contributing, even in my darkest hour.
I am extremely proud of my impact – from my lifelong career as a world-leading melanoma pathologist and cancer researcher, to being the first patient to receive experimental brain cancer treatment based on melanoma science I helped develop, followed by participation in development of a brain cancer clinical trial and advocacy for greater investment in brain cancer research.
I sincerely hope the scientific data and awareness I have generated will provide a platform for others to build upon to ultimately make a difference for future cancer patients.
I am perhaps lucky that the physical and cognitive impacts of the final stages of brain cancer mean that I am unlikely to have been aware of my own decline over these final weeks.
I write this knowing that my wonderful family would have been by my side every minute, as they have been throughout my cancer journey. Like all families living with cancer, the impacts have been far wider than just on me. Since my diagnosis in May 2023, our family has been thrown challenges that we didn’t plan or want. But those same challenges have also drawn us closer and reinforced that family is everything. I cannot thank my beautiful wife Katie and my adored children Emily, Matthew and Lucy enough for their love, their support, their strength, and their compassion. They are shining examples of the best of humanity and make me extremely proud.
Much love also to my elderly Mum and Dad in Tasmania, my brother Mark and many friends for their strength and support, particularly during these recent years. My childhood was full of adventures built on “how”, not “if”, which set me on a path to being inquisitive and truly believing nothing is impossible.
If you will allow me one final indulgence, composing this letter encouraged me to reflect proudly on my role in generating new evidence ultimately leading to life-saving advances in melanoma diagnosis and treatment. I helped start what is now the world’s largest melanoma biobank, became the world’s most published melanoma pathologist authoring over 1000 research publications, and lectured hundreds of times at conferences across the globe. I am also proud to have held leadership roles at the American Joint Committee on Cancer and the World Health Organisation and many other international organisations.
In addition to my roles in the development of breakthroughs in melanoma treatment, including immunotherapy, and the subsequent soaring of advanced melanoma survival rates, my mentoring of the next generation of clinical doctors (including pathologists) and cancer researchers has perhaps been the greatest reward to come from my life work. I have always been driven by the belief that we all have a responsibility to try to change the future for others and leave the world a better place. From mentoring PhD students in the translational research lab and early career clinicians in hospitals, to taking on the undeniably risky experimental treatment for brain cancer and undergoing swathes of voluntary medical tests purely to advance scientific knowledge of brain cancer – I have lived that ethos to the fullest.
I was incredibly humbled when the federal government recently named the Chair in Brain Cancer Research at the Chris O’Brien Lifehouse in my honour. Such public accolades have never sat entirely comfortably with me, but I am delighted that much-needed brain cancer research will continue to be funded long after I have gone.
To my research and clinical colleagues, I implore you to stay inquisitive and brave and keep striving to break new ground. To all cancer patients, I encourage you to consider enrolling in research and clinical trials, if on offer. And to government and the wider community, please keep funding science and medical research. This is the most impactful way that you, too, can make a difference.
Perhaps the greatest lesson to come from these last three years is that cancer does not define us. It may be the current road we are travelling, but it is not our entire journey. A terminal cancer diagnosis does however provide clarity as to what truly matters. It shines a spotlight on the importance of relationships, on true friendship and on selflessness.
Whilst cancer may not define us, our ability to empathise with and have compassion towards others does. That is true in all facets of life, and I am confident those traits will continue to guide Australians towards acceptance and support for all.
My final message to all Australians is to say thank you for your outpouring of love and support for me and my family. Those of you I met during my travels as joint 2024 Australian of the Year, my amazing online community which spans many countries, and of course my hometown Tasmanians – you’ve laughed with me, cried with me, and provided encouragement and support to keep going just when I needed it most. I haven’t sugar-coated my journey and I sincerely thank you for allowing me the space and opportunity to share it with you, warts and all. I hope I have in some small way made the road ahead easier and smoother for others.
If my legacy was to continue beyond these words, I would be delighted and humbled to be remembered as a proud everyday Aussie who “gave it a crack”, and in doing so, inspired others to pursue their dreams and passions with humility, love and compassion.
This was an open letter to the public, I'm sure he had endless people including her that he wanted to thank, but this was his final letter to all of us.
Given what he went through and how he responded over the time, he owed no one any more but graciously gave us this final farewell.
I don't think it's particularly gracious to criticize the content.
We lost him and Daniher in the last weeks, both great people that have advanced our medical research in different ways, everyone was lucky that they were in the world.
I have a habit of reading obituaries and of getting a small reprieve when the cause of death is not cancer. I have the feeling that, for something that kills one in four people, we should be doing more as a society, and not leave the problem to a small group of people desperately fighting in the shadows. Thank you for your service, Dr. Scoyler.
It's an old person's disease. 30% of all cancers occur after the age of 74, 50% after 50.
I used to work in the pharmaceutical industry and my experience is that people in this field in particular are extremely passionate - you can immediately tell who lost loved ones to cancer.
One of the reasons cancer kills 1 in 4 people because we've eradicated lots of things that killed people before they were old enough to develop cancer. If we ever manage to cure cancer (or some cancers, because it's a taxonomy rather than a thing) then people will die of something else. No doubt we'll then wonder why we never spent enough effort curing whatever that is.
There will always be a reason why people die, and it will never feel like we're doing enough.
"because we've eradicated lots of things that killed people before they were old enough to develop cancer"
The other reason might be, we introduced lots of new cancer inducing compounds.
Also cancer is very complex and a broad term. "Solving" it likely requires solving the human body first, as in understanding every mechanism to the finest details.
Not to subtract from anything you said, but something that could help us, in the aggregate, as a society, is to frame things differently.
Today, most people say "human biology is a thing of wonder" "Humans are built for longevity". And when a terrible ailment strikes, they explain it with "The meaning of life/God/The devil/We must die of something!"
In my mind, we could create a human systems biology profession where students are told during the first day at school "human biology is a mess wrought up by mindless evolution. Your job is to bring it to the exacting standards of perfection that we are able to apply to other things. In the measure we succeed, we will be able to bring dignity to billions of people."
It’s not that we can’t fix things— given enough time and resources. It is just that we need to fix too many things. Each thing fixed only makes a small difference to average uptime, and that will be true for a long time, unfortunately.
We got some big early wins from low hanging fruit of infant mortality and poor sanitation. Everything else moves the needle a lot less, and it is a really long bug list. Our environment does ongoing damage of many different kinds and we wear out.
It's actually both - a thing of wonder wrought up by tens of millions of years of mindless evolution. And most scientists would already be happy to be able to "hack" this incredibly complex system to achieve a certain goal (e.g. cure cancer), not "refactor" the whole code, as you seem to be suggesting.
> If we ever manage to cure cancer ... then people will die of something else.
Well yes, people will still die, but in the process average life expectancy goes up. I think Aubrey de Grey once said that if you cured cancer and aging then the average life span would be seven hundred years or so, based on death rates due to accidents and murder, etc.
> There will always be a reason why people die, and it will never feel like we're doing enough.
That's the best of humanity: love for fellow human beings, and a desire to preserve life. And seeing that we live in an inconceivably vast and empty universe, I see nothing wrong with the idea.
He was one of our leading researchers and known for his work (along with Dr Long) on melanomas, one of the deadliest and common cancers in Australia.
He came out publicly with his diagnosis and because he was a researcher, he was able to use the same sort of technology he had worked on for melanomas to advance the research on glioblastomas because the ethical rules for usual studies could be relaxed.
His work along with his doctors has advanced research dramatically hopefully leading to, if not a cure, treatments that can make yet another cancer a chronic disease. There are formal research clinical trials being planned on the technology and treatments he pioneered.
He was a celebrity because we (Australians) knew a good and worthy human when we saw one.
> The poor man was made into a local Australian celebrity by the media.
I wouldn't say that's quite what happened - I mean, he was explicitly trying to use his profile to raise awareness for brain cancer research so was very public with the progress of his experimental treatment!
Australia isn't like that- we're much more attuned to genuine hard work, and know it when we see it, along with knowing when we're being strung along. It's in our culture. We respect great people like this guy who do good work but choose to be humble.
As a brain tumor survivor I count each day as a blessing. I was diagnosed at 14 and your chances are slightly better as a kid. Even then it came back at 16 again but now I do not even do checks anymore and I am 44 now.
People like Dr. Scoyler or my own doctor are always in my heart, we owe them so much.
Survival need not mean a happy life either. My brother had one before he could speak - at 1 year old. It was removed, but he has been suffering from epileptic seizures ever since.
Sorry to hear that :( In my case I only lost hearing from one side due to nerve damage, it also impacted balance in those early years but interestingly enough that improved a lot just by using the other inner ear.
His open letter, released after his death:
My fellow Australians, I pen this letter as a final goodbye to all those I have had the immense privilege of loving, sharing life’s adventures with, working alongside and meeting during what can only be described as a life filled with happiness, optimism, opportunity and passion.
My intention is for this letter to be published upon my passing – as my final farewell. I’ve spent the last three years being open and honest about my journey with glioblastoma (brain cancer), in part to be transparent about what cancer patients and their families go through, and in part to provide hope and inspiration that we can and should continue to push boundaries to propel the cancer field forward.
Having dedicated my 35-year working life to patient care, cancer research and improving lives, I wanted to keep contributing, even in my darkest hour.
I am extremely proud of my impact – from my lifelong career as a world-leading melanoma pathologist and cancer researcher, to being the first patient to receive experimental brain cancer treatment based on melanoma science I helped develop, followed by participation in development of a brain cancer clinical trial and advocacy for greater investment in brain cancer research.
I sincerely hope the scientific data and awareness I have generated will provide a platform for others to build upon to ultimately make a difference for future cancer patients.
I am perhaps lucky that the physical and cognitive impacts of the final stages of brain cancer mean that I am unlikely to have been aware of my own decline over these final weeks.
I write this knowing that my wonderful family would have been by my side every minute, as they have been throughout my cancer journey. Like all families living with cancer, the impacts have been far wider than just on me. Since my diagnosis in May 2023, our family has been thrown challenges that we didn’t plan or want. But those same challenges have also drawn us closer and reinforced that family is everything. I cannot thank my beautiful wife Katie and my adored children Emily, Matthew and Lucy enough for their love, their support, their strength, and their compassion. They are shining examples of the best of humanity and make me extremely proud.
Much love also to my elderly Mum and Dad in Tasmania, my brother Mark and many friends for their strength and support, particularly during these recent years. My childhood was full of adventures built on “how”, not “if”, which set me on a path to being inquisitive and truly believing nothing is impossible.
If you will allow me one final indulgence, composing this letter encouraged me to reflect proudly on my role in generating new evidence ultimately leading to life-saving advances in melanoma diagnosis and treatment. I helped start what is now the world’s largest melanoma biobank, became the world’s most published melanoma pathologist authoring over 1000 research publications, and lectured hundreds of times at conferences across the globe. I am also proud to have held leadership roles at the American Joint Committee on Cancer and the World Health Organisation and many other international organisations.
In addition to my roles in the development of breakthroughs in melanoma treatment, including immunotherapy, and the subsequent soaring of advanced melanoma survival rates, my mentoring of the next generation of clinical doctors (including pathologists) and cancer researchers has perhaps been the greatest reward to come from my life work. I have always been driven by the belief that we all have a responsibility to try to change the future for others and leave the world a better place. From mentoring PhD students in the translational research lab and early career clinicians in hospitals, to taking on the undeniably risky experimental treatment for brain cancer and undergoing swathes of voluntary medical tests purely to advance scientific knowledge of brain cancer – I have lived that ethos to the fullest.
I was incredibly humbled when the federal government recently named the Chair in Brain Cancer Research at the Chris O’Brien Lifehouse in my honour. Such public accolades have never sat entirely comfortably with me, but I am delighted that much-needed brain cancer research will continue to be funded long after I have gone.
To my research and clinical colleagues, I implore you to stay inquisitive and brave and keep striving to break new ground. To all cancer patients, I encourage you to consider enrolling in research and clinical trials, if on offer. And to government and the wider community, please keep funding science and medical research. This is the most impactful way that you, too, can make a difference.
Perhaps the greatest lesson to come from these last three years is that cancer does not define us. It may be the current road we are travelling, but it is not our entire journey. A terminal cancer diagnosis does however provide clarity as to what truly matters. It shines a spotlight on the importance of relationships, on true friendship and on selflessness.
Whilst cancer may not define us, our ability to empathise with and have compassion towards others does. That is true in all facets of life, and I am confident those traits will continue to guide Australians towards acceptance and support for all.
My final message to all Australians is to say thank you for your outpouring of love and support for me and my family. Those of you I met during my travels as joint 2024 Australian of the Year, my amazing online community which spans many countries, and of course my hometown Tasmanians – you’ve laughed with me, cried with me, and provided encouragement and support to keep going just when I needed it most. I haven’t sugar-coated my journey and I sincerely thank you for allowing me the space and opportunity to share it with you, warts and all. I hope I have in some small way made the road ahead easier and smoother for others.
If my legacy was to continue beyond these words, I would be delighted and humbled to be remembered as a proud everyday Aussie who “gave it a crack”, and in doing so, inspired others to pursue their dreams and passions with humility, love and compassion.
With much love and gratitude, Richard.
Great letter, but not a word for his friend, colleague and co-Australian of the Year, Professor Georgina Long?
This was an open letter to the public, I'm sure he had endless people including her that he wanted to thank, but this was his final letter to all of us.
Given what he went through and how he responded over the time, he owed no one any more but graciously gave us this final farewell.
I don't think it's particularly gracious to criticize the content.
We lost him and Daniher in the last weeks, both great people that have advanced our medical research in different ways, everyone was lucky that they were in the world.
I would bet he wrote a private letter to her.
Probably one to his parents or wife or kids, too…
I have a habit of reading obituaries and of getting a small reprieve when the cause of death is not cancer. I have the feeling that, for something that kills one in four people, we should be doing more as a society, and not leave the problem to a small group of people desperately fighting in the shadows. Thank you for your service, Dr. Scoyler.
It's an old person's disease. 30% of all cancers occur after the age of 74, 50% after 50.
I used to work in the pharmaceutical industry and my experience is that people in this field in particular are extremely passionate - you can immediately tell who lost loved ones to cancer.
One of the reasons cancer kills 1 in 4 people because we've eradicated lots of things that killed people before they were old enough to develop cancer. If we ever manage to cure cancer (or some cancers, because it's a taxonomy rather than a thing) then people will die of something else. No doubt we'll then wonder why we never spent enough effort curing whatever that is.
There will always be a reason why people die, and it will never feel like we're doing enough.
"because we've eradicated lots of things that killed people before they were old enough to develop cancer"
The other reason might be, we introduced lots of new cancer inducing compounds.
Also cancer is very complex and a broad term. "Solving" it likely requires solving the human body first, as in understanding every mechanism to the finest details.
Not to subtract from anything you said, but something that could help us, in the aggregate, as a society, is to frame things differently.
Today, most people say "human biology is a thing of wonder" "Humans are built for longevity". And when a terrible ailment strikes, they explain it with "The meaning of life/God/The devil/We must die of something!"
In my mind, we could create a human systems biology profession where students are told during the first day at school "human biology is a mess wrought up by mindless evolution. Your job is to bring it to the exacting standards of perfection that we are able to apply to other things. In the measure we succeed, we will be able to bring dignity to billions of people."
It’s not that we can’t fix things— given enough time and resources. It is just that we need to fix too many things. Each thing fixed only makes a small difference to average uptime, and that will be true for a long time, unfortunately.
We got some big early wins from low hanging fruit of infant mortality and poor sanitation. Everything else moves the needle a lot less, and it is a really long bug list. Our environment does ongoing damage of many different kinds and we wear out.
It's actually both - a thing of wonder wrought up by tens of millions of years of mindless evolution. And most scientists would already be happy to be able to "hack" this incredibly complex system to achieve a certain goal (e.g. cure cancer), not "refactor" the whole code, as you seem to be suggesting.
Lead paint/gasoline. Asbestos. Teflon. Chernobyl. Weedkiller. Just what I can think of since the 70s.
To add something, glioblastoma multiforme is really weird and our understanding of it is severely limited.
https://advanced.onlinelibrary.wiley.com/doi/10.1002/advs.20...
Yes. Modern life is a chemistry experiment. We are also exposed to various forms of radiation on a regular basis.
> If we ever manage to cure cancer ... then people will die of something else.
Well yes, people will still die, but in the process average life expectancy goes up. I think Aubrey de Grey once said that if you cured cancer and aging then the average life span would be seven hundred years or so, based on death rates due to accidents and murder, etc.
> There will always be a reason why people die, and it will never feel like we're doing enough.
That's the best of humanity: love for fellow human beings, and a desire to preserve life. And seeing that we live in an inconceivably vast and empty universe, I see nothing wrong with the idea.
Yes, and the other reason is we don’t invest enough.
Calling them all cancer is somewhat part of the problem I think.
It's not one disease, it is lots.
The open letter: https://www.smh.com.au/national/i-d-be-delighted-to-be-remem...
Link without paywall: https://smry.ai/https:/www.smh.com.au/national/i-d-be-deligh...
So sad that he was taken down by an agressive brain tumor himself.
This is the news I was afraid of. I followed his uncertain path since the beginning.
https://en.wikipedia.org/wiki/Richard_Scolyer
Glioblastomas have a poor 5 year survival rate.
The poor man was made into a local Australian celebrity by the media.
This is not some media beatup.
He was one of our leading researchers and known for his work (along with Dr Long) on melanomas, one of the deadliest and common cancers in Australia.
He came out publicly with his diagnosis and because he was a researcher, he was able to use the same sort of technology he had worked on for melanomas to advance the research on glioblastomas because the ethical rules for usual studies could be relaxed.
His work along with his doctors has advanced research dramatically hopefully leading to, if not a cure, treatments that can make yet another cancer a chronic disease. There are formal research clinical trials being planned on the technology and treatments he pioneered.
He was a celebrity because we (Australians) knew a good and worthy human when we saw one.
> The poor man was made into a local Australian celebrity by the media.
I wouldn't say that's quite what happened - I mean, he was explicitly trying to use his profile to raise awareness for brain cancer research so was very public with the progress of his experimental treatment!
The celebrity comes with the award (Australian of the Year). He could have refused the nomination if he had wanted to.
Australia isn't like that- we're much more attuned to genuine hard work, and know it when we see it, along with knowing when we're being strung along. It's in our culture. We respect great people like this guy who do good work but choose to be humble.