Richard Scolyer: doctor and 2024 Australian of the Year on his successful new brain cancer treatment
November 30, 2024 • 14 mins
Professor Richard Scolyer has helped transform the treatment of skin cancer in his role at the Melanoma Institute of Australia and his research has also helped aid additional breakthroughs.
After Scolyer was diagnosed with an incurable brain cancer, he used his melanoma research to treat his condition - and the results paid off.
Scolyer says he felt compelled to try the new research after learning the treatment for his brain cancer hadn't evolved in 20 years.
"We had an opportunity to go down this path and it felt right for me - and I guess a bit risky."
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Speaker 1 (00:06):
You're listening to the Sunday Session podcast with Francesca Rudkin
from News Talk sedb.
Speaker 2 (00:13):
Right twenty twenty four. Australian of the Year, Professor Richard
Scullier is a world leading clinician and cancer researcher. In
his role with Melanoma Institute of Australia, he has helped
transform the treatment of skin cancer, making it a much
more curable disease. But last year Richard's life was turned
upside down. He was diagnosed with an incurable brain cancer.
(00:35):
Not one to sit back, Richard made the incredible decision
to take his own melanoma science and in a world first,
use it to treat his brain cancer. Richard has documented
his book his story in a new book. It's called Brainstorm.
It is out now and Professor Richard Scalier joins me.
Speaker 3 (00:50):
Good morning, Hey Francesca, great to talk to you.
Speaker 2 (00:54):
Good to talk to you too. I believe that you
just back from a bike ride. How are you feeling
these days?
Speaker 3 (01:00):
Yeah? Pretty good.
Speaker 1 (01:01):
Yeah.
Speaker 3 (01:01):
I love doing exercise. It's always been part of my
life and I guess as I go through the brain
cancer journey, I find it's good for my mental health
and spirits keeps me up. And yeah, I got quite
a lot of mates that I like going out riding with,
and yeah, I do a bit of jogging and occasionally
swim these days.
Speaker 2 (01:21):
Richard took me through what happened and how you were diagnosed.
Speaker 3 (01:25):
I was over in Poland and lecturing actually for a
main of mine from Boston in the US. He went
to medical school in Poland and he likes putting on
education sessions and he asked me to come over to
Poland and do a session over there. So I accepted,
(01:46):
and I was supposed to be doing a lecture over
in Ireland the next week, so I talked my wife
into coming with me, which turned out to be very
fortuitous because the day after the conference finished, Arthur and
his wife took us up into the mountains at the
Slovakian Polish border and we climbed up some mountains and
saw some incredible views. But one of the complications of
(02:08):
going up eye is that you get swelling of your brain,
and that night I had a seizure Grand Miles seizure,
and or the next morning, and that's when my brain
tumor presented.
Speaker 2 (02:21):
Isn't that interesting? I mean, you know, the altitude. It
obviously has enabled you to pick this up earlier than
if you hadn't been up in the mountains.
Speaker 3 (02:30):
I reckon you narwd it there, Francesca, it wouldn't have
been picked up so early. And in some ways that's
been fortuitous because it opened some doors for some trial
of some therapies that we developed in melanoma. They're a
bit risky, but it felt right to me to give
it a crack when treatment hadn't changed in twenty years
(02:52):
for this sort of brain cancer that I've got. So yeah,
that we had an opportunity to go down this path
and it felt right for me, and I guess a
bit risky. It meant the normal treatment's called the Stook protocol,
where you have surgery and then about a month later
commits on radiotherapy and chemotherapy, and the radiotherapy goes for
(03:17):
six weeks and the chemotherapy for six months. And my colleague,
Professor Georgina Long, who's the co medical director with me
at the Malom Institute and a medical oncologist who's led
clinical trials in inminotherapy, said, do you These aren't her words,
but do you want to give it a crack? And
see if we can make a difference with what we
(03:39):
call pre surgery or neoadjuvant iminotherapy, because it's been a
game changer in melanoma, to see if it would make
any difference in brain cancer, and see if we could
generate some scientific knowledge that gave some hope to this
sort of treatment. So, yeah, that was the path that
(04:00):
we went down. It meant that I didn't have any chemotherapy,
and the average survival for this type of brain cancer
I've got is twelve months, and if you don't have
the chema it drops to six months. And the immune therapy,
if you have combination im in a therapy, the risk
of getting major adverse events about sixty percent. So it
(04:21):
was quite risky proposition, but it just felt like the
right thing to do, and there's a good team of
people who after a while we could get on board
to go down this path. And we don't. The only
way to really know whether something like this work is
through works is through a clinical trial, but we've been
(04:42):
able to generate some scientific knowledge by comparing my tumor
before I had the immunotherapy with after I had the
first first dose of three types of iminotherapy and It
was quite exciting the data that we saw, so it
gives some optimism or hope that this is a path
(05:03):
that's worth pursuing with a clinical trial. So hopefully in
the not too distant future something will become available so
we can actually find out in two groups of patients
whether or not it actually works.
Speaker 2 (05:15):
So, Richard, what is the data showing you now about
your brain cancer?
Speaker 3 (05:20):
So we compared my brain cancer a biopsy of it
before I had imminotherapy, so before the debulking surgery, and
that's called pre surgery or in medical terms, neoadjuvant iminotherapy.
And when we compared the tumor that was taken out
after this dose of three different types of immunotherapy, there
(05:44):
was an increase in the number of lymphoid cells, so
a type of immune cells within the tumor and the
type of immune cells in there, which gave some hope
that you know, this to be honest, it wasn't really
what we're expecting, and yeah, so give some hope and
suggest that this is perhaps something worth doing. I do
(06:08):
note that the guy that the standard treatment is for
this sort of brain cancer as a subtype of gua
blastemer is called the Stoop protocol after this guy, Roger Stoop,
who works at Northwestern in Chicago, and I read something
on I think it was BBC News or it might
have been Bloomberg News, but basically what he said was,
(06:30):
I might have a wording quite right, but something along
the lines. If Scotli has had no recurrence at twelve
months or even eighty months, then we should start to
get excited about this books of therapy. So yeah, hopefully
we can pursue it, and hopefully it'll bring some more
(06:50):
options and hopefully even improve outcomes to patients. So like,
I feel very lucky that I'm still here. But the
question that we can't answer on one patient is it
because of the therapy or is it just because of luck?
Because when we look at outcomes of patients, we look
at things called survival curves, and when we talk about
(07:12):
the average or what we call median survival, it's in
the middle of that bell curve, and there's some patients
who for whatever reason, survive for longer than the average,
and some people survive for shorter periods of time. So
it could just be a flute that I'm still alive
now and haven't had a recurrence. But yeah, so ultimately
(07:34):
a clinical trial is the tests that will answer this question.
Speaker 2 (07:38):
Richard, you mentioned, you know, the traditional way of treating
this would have been radiation in chemotherapy. They are terms
that we understand and we kind of know what they involved.
But what did this new treatment of immunotherapy, What is it?
How do you undergo it?
Speaker 3 (07:54):
I suppose that's a great question, Francesca. When was first
tried in melanoma, and melanoma you know, you know, you
pick it up early, most people will be cured. Prevention
is better than cured. But once it's spread around your body.
About fifteen years ago, basically most people had died within
(08:17):
a year. Five year survival rate was less than five percent.
But because of this therapy now we're five year survival
rates about fifty seven percent. So how does it work?
So when in contrast to chemotherapy, which basically poisons all
cells in your body and you hope that it will
(08:37):
poison the cancer cells more than other cells, immunotherapy works
by trying to improve the immune system's ability to recognize
cancer cells and kill them off. Cancer cells put up
shields around themselves to stop the immune cells from getting
in and doing their job. And imminotherapy works by pulling
(09:01):
down those shields to allow the immune system to recognize
the tumor inside and try and kill it off. And
for me, one of the big things about brain cancer,
the subtype I've got it sort of creeps off with
like tentacles or tree roots that go everywhere in your brain,
and if you try to cure it with local therapy,
(09:24):
with surgery and radiotherapy, you'd have to remove or radiate
such a massive portion of your brain that the chances
of it of you having major functional deficits, you know,
almost it's almost certain that that's what's kind of happened.
So it tends to be that the surgeon de bulk
(09:46):
as much as possible without causing major functional deficits. So
this idea that we can get a therapy which will
select out the tumor cells but leave your normal brain
cells alone is very attractive for me. And you know
what we've seen in melanoma now and some other cancers
means for me it was worth a crack, but obviously
(10:09):
a risky path to go down, with survival right dropping
in half and the chance of getting major adverse event
over fifty percent. So it took a little while to
get a team of people on board who would support
this trial or this sort of risky business to go
down this But well, anyway, I'm still here.
Speaker 2 (10:31):
It's still here. I mean it was pretty brutal. It
was pretty brutal, though, wasn't it.
Speaker 3 (10:36):
Well, To be honest, I feel pretty pretty lucky. Obviously,
if you're surgery, things to get through the first period
is tough, and I did have some side effects from imnotherapy,
but you know, as many cancer patients, who's suffering more
than what I am am now, so you know, in
some respects, well, good Georgiana has probably administered imnotherapy to
(11:01):
more patients than any doctrine in the world, so understanding
the risk. But ultimately the risks of side effects from
mnotherapy are primarily driven by your genetic makeup, So whether
you have some of the complications a sort of immune reaction,
so it can affect your gastrointestinal system, your liver, your thyroid, gland,
(11:23):
and various other organs you get the immune cells attack
normal parts of your body, so part of its light
related to your genetic makeup. So in the end, I
think I had fourteen doses of immine therapy and combination
im therapy, which I know hadn't been published at the
(11:44):
time I started, but some data was recently released which
showed I think it was roughly half of the patients
could only take one doses one dose of three drugs
together because of the adverse events. So whatever, you know,
I've been lucky to get through what I've got through.
And also I've been having a personalized anti cancer back again,
(12:07):
a way of stimulating the immune system to try and
fight the cancer.
Speaker 2 (12:12):
Richard, how does going through an experience like this change
you as a doctor or as a person.
Speaker 3 (12:18):
Yeah, that's a great question. It's turned my life upside down,
and I guess reprioritize a lot of things in life, perhaps,
you know. Perhaps so I've worked very hard throughout my
career and life, dedicating my life to try and make
a difference for cancer patients and contribute to the community.
(12:41):
And I work with an incredible team of people, so
it's not just me. There's an amazing team of people
who've worked together. And I think for all aspects of life,
you need a team working together if you really want
to make a difference. But when you're diagnosed with supposedly
incurable cancer. It definitely turned my life upside down, and
(13:02):
I've reprioritized things. I still work every day, but you know,
family is so important to me, my wife and children,
and you know, weighing things up about other aspects of life,
and the other thing that that I've really recognized is
to live and enjoy every day and live with hope
(13:25):
for the future, because I think in some ways as
a doctor, you you know, you try your best to
support and help patients, but it's different when you're you're
the person in the middle of it. And yeah, you know,
I don't It's not a criticism of anyone, it's just
life that that that's yeah, well for me anyway, And
(13:49):
there's different stages of the cancer journey that experts talk
about and and for me, I'm probably a bit slower
than other patients to get through and accept that you've
got cancer. Yeat obviously has caused grief and up and
up and down with yeah, with how I felt about
(14:11):
different aspects of my life. So yeah, it definitely hasn't
been a smooth sailing journey at times. But yeah, definitely
trying to make the most of every day and do
things that I enjoy and particularly with my family.
Speaker 2 (14:25):
Richard, it's been a pleasure to talk to you this morning.
Thank you so much for your time. And the book
is called Brainstorm. It is in stores now.
Speaker 1 (14:33):
For more from the Sunday session with Francesca Rudkin, listen
live to news Talks it'd be from nine am Sunday,
or follow the podcast on iHeartRadio.
You're listening to the Sunday Session podcast with Francesca Rudkin
from News Talk sedb.
Speaker 2 (00:13):
Right twenty twenty four. Australian of the Year, Professor Richard
Scullier is a world leading clinician and cancer researcher. In
his role with Melanoma Institute of Australia, he has helped
transform the treatment of skin cancer, making it a much
more curable disease. But last year Richard's life was turned
upside down. He was diagnosed with an incurable brain cancer.
(00:35):
Not one to sit back, Richard made the incredible decision
to take his own melanoma science and in a world first,
use it to treat his brain cancer. Richard has documented
his book his story in a new book. It's called Brainstorm.
It is out now and Professor Richard Scalier joins me.
Speaker 3 (00:50):
Good morning, Hey Francesca, great to talk to you.
Speaker 2 (00:54):
Good to talk to you too. I believe that you
just back from a bike ride. How are you feeling
these days?
Speaker 3 (01:00):
Yeah? Pretty good.
Speaker 1 (01:01):
Yeah.
Speaker 3 (01:01):
I love doing exercise. It's always been part of my
life and I guess as I go through the brain
cancer journey, I find it's good for my mental health
and spirits keeps me up. And yeah, I got quite
a lot of mates that I like going out riding with,
and yeah, I do a bit of jogging and occasionally
swim these days.
Speaker 2 (01:21):
Richard took me through what happened and how you were diagnosed.
Speaker 3 (01:25):
I was over in Poland and lecturing actually for a
main of mine from Boston in the US. He went
to medical school in Poland and he likes putting on
education sessions and he asked me to come over to
Poland and do a session over there. So I accepted,
(01:46):
and I was supposed to be doing a lecture over
in Ireland the next week, so I talked my wife
into coming with me, which turned out to be very
fortuitous because the day after the conference finished, Arthur and
his wife took us up into the mountains at the
Slovakian Polish border and we climbed up some mountains and
saw some incredible views. But one of the complications of
(02:08):
going up eye is that you get swelling of your brain,
and that night I had a seizure Grand Miles seizure,
and or the next morning, and that's when my brain
tumor presented.
Speaker 2 (02:21):
Isn't that interesting? I mean, you know, the altitude. It
obviously has enabled you to pick this up earlier than
if you hadn't been up in the mountains.
Speaker 3 (02:30):
I reckon you narwd it there, Francesca, it wouldn't have
been picked up so early. And in some ways that's
been fortuitous because it opened some doors for some trial
of some therapies that we developed in melanoma. They're a
bit risky, but it felt right to me to give
it a crack when treatment hadn't changed in twenty years
(02:52):
for this sort of brain cancer that I've got. So yeah,
that we had an opportunity to go down this path
and it felt right for me, and I guess a
bit risky. It meant the normal treatment's called the Stook protocol,
where you have surgery and then about a month later
commits on radiotherapy and chemotherapy, and the radiotherapy goes for
(03:17):
six weeks and the chemotherapy for six months. And my colleague,
Professor Georgina Long, who's the co medical director with me
at the Malom Institute and a medical oncologist who's led
clinical trials in inminotherapy, said, do you These aren't her words,
but do you want to give it a crack? And
see if we can make a difference with what we
(03:39):
call pre surgery or neoadjuvant iminotherapy, because it's been a
game changer in melanoma, to see if it would make
any difference in brain cancer, and see if we could
generate some scientific knowledge that gave some hope to this
sort of treatment. So, yeah, that was the path that
(04:00):
we went down. It meant that I didn't have any chemotherapy,
and the average survival for this type of brain cancer
I've got is twelve months, and if you don't have
the chema it drops to six months. And the immune therapy,
if you have combination im in a therapy, the risk
of getting major adverse events about sixty percent. So it
(04:21):
was quite risky proposition, but it just felt like the
right thing to do, and there's a good team of
people who after a while we could get on board
to go down this path. And we don't. The only
way to really know whether something like this work is
through works is through a clinical trial, but we've been
(04:42):
able to generate some scientific knowledge by comparing my tumor
before I had the immunotherapy with after I had the
first first dose of three types of iminotherapy and It
was quite exciting the data that we saw, so it
gives some optimism or hope that this is a path
(05:03):
that's worth pursuing with a clinical trial. So hopefully in
the not too distant future something will become available so
we can actually find out in two groups of patients
whether or not it actually works.
Speaker 2 (05:15):
So, Richard, what is the data showing you now about
your brain cancer?
Speaker 3 (05:20):
So we compared my brain cancer a biopsy of it
before I had imminotherapy, so before the debulking surgery, and
that's called pre surgery or in medical terms, neoadjuvant iminotherapy.
And when we compared the tumor that was taken out
after this dose of three different types of immunotherapy, there
(05:44):
was an increase in the number of lymphoid cells, so
a type of immune cells within the tumor and the
type of immune cells in there, which gave some hope
that you know, this to be honest, it wasn't really
what we're expecting, and yeah, so give some hope and
suggest that this is perhaps something worth doing. I do
(06:08):
note that the guy that the standard treatment is for
this sort of brain cancer as a subtype of gua
blastemer is called the Stoop protocol after this guy, Roger Stoop,
who works at Northwestern in Chicago, and I read something
on I think it was BBC News or it might
have been Bloomberg News, but basically what he said was,
(06:30):
I might have a wording quite right, but something along
the lines. If Scotli has had no recurrence at twelve
months or even eighty months, then we should start to
get excited about this books of therapy. So yeah, hopefully
we can pursue it, and hopefully it'll bring some more
(06:50):
options and hopefully even improve outcomes to patients. So like,
I feel very lucky that I'm still here. But the
question that we can't answer on one patient is it
because of the therapy or is it just because of luck?
Because when we look at outcomes of patients, we look
at things called survival curves, and when we talk about
(07:12):
the average or what we call median survival, it's in
the middle of that bell curve, and there's some patients
who for whatever reason, survive for longer than the average,
and some people survive for shorter periods of time. So
it could just be a flute that I'm still alive
now and haven't had a recurrence. But yeah, so ultimately
(07:34):
a clinical trial is the tests that will answer this question.
Speaker 2 (07:38):
Richard, you mentioned, you know, the traditional way of treating
this would have been radiation in chemotherapy. They are terms
that we understand and we kind of know what they involved.
But what did this new treatment of immunotherapy, What is it?
How do you undergo it?
Speaker 3 (07:54):
I suppose that's a great question, Francesca. When was first
tried in melanoma, and melanoma you know, you know, you
pick it up early, most people will be cured. Prevention
is better than cured. But once it's spread around your body.
About fifteen years ago, basically most people had died within
(08:17):
a year. Five year survival rate was less than five percent.
But because of this therapy now we're five year survival
rates about fifty seven percent. So how does it work?
So when in contrast to chemotherapy, which basically poisons all
cells in your body and you hope that it will
(08:37):
poison the cancer cells more than other cells, immunotherapy works
by trying to improve the immune system's ability to recognize
cancer cells and kill them off. Cancer cells put up
shields around themselves to stop the immune cells from getting
in and doing their job. And imminotherapy works by pulling
(09:01):
down those shields to allow the immune system to recognize
the tumor inside and try and kill it off. And
for me, one of the big things about brain cancer,
the subtype I've got it sort of creeps off with
like tentacles or tree roots that go everywhere in your brain,
and if you try to cure it with local therapy,
(09:24):
with surgery and radiotherapy, you'd have to remove or radiate
such a massive portion of your brain that the chances
of it of you having major functional deficits, you know,
almost it's almost certain that that's what's kind of happened.
So it tends to be that the surgeon de bulk
(09:46):
as much as possible without causing major functional deficits. So
this idea that we can get a therapy which will
select out the tumor cells but leave your normal brain
cells alone is very attractive for me. And you know
what we've seen in melanoma now and some other cancers
means for me it was worth a crack, but obviously
(10:09):
a risky path to go down, with survival right dropping
in half and the chance of getting major adverse event
over fifty percent. So it took a little while to
get a team of people on board who would support
this trial or this sort of risky business to go
down this But well, anyway, I'm still here.
Speaker 2 (10:31):
It's still here. I mean it was pretty brutal. It
was pretty brutal, though, wasn't it.
Speaker 3 (10:36):
Well, To be honest, I feel pretty pretty lucky. Obviously,
if you're surgery, things to get through the first period
is tough, and I did have some side effects from imnotherapy,
but you know, as many cancer patients, who's suffering more
than what I am am now, so you know, in
some respects, well, good Georgiana has probably administered imnotherapy to
(11:01):
more patients than any doctrine in the world, so understanding
the risk. But ultimately the risks of side effects from
mnotherapy are primarily driven by your genetic makeup, So whether
you have some of the complications a sort of immune reaction,
so it can affect your gastrointestinal system, your liver, your thyroid, gland,
(11:23):
and various other organs you get the immune cells attack
normal parts of your body, so part of its light
related to your genetic makeup. So in the end, I
think I had fourteen doses of immine therapy and combination
im therapy, which I know hadn't been published at the
(11:44):
time I started, but some data was recently released which
showed I think it was roughly half of the patients
could only take one doses one dose of three drugs
together because of the adverse events. So whatever, you know,
I've been lucky to get through what I've got through.
And also I've been having a personalized anti cancer back again,
(12:07):
a way of stimulating the immune system to try and
fight the cancer.
Speaker 2 (12:12):
Richard, how does going through an experience like this change
you as a doctor or as a person.
Speaker 3 (12:18):
Yeah, that's a great question. It's turned my life upside down,
and I guess reprioritize a lot of things in life, perhaps,
you know. Perhaps so I've worked very hard throughout my
career and life, dedicating my life to try and make
a difference for cancer patients and contribute to the community.
(12:41):
And I work with an incredible team of people, so
it's not just me. There's an amazing team of people
who've worked together. And I think for all aspects of life,
you need a team working together if you really want
to make a difference. But when you're diagnosed with supposedly
incurable cancer. It definitely turned my life upside down, and
(13:02):
I've reprioritized things. I still work every day, but you know,
family is so important to me, my wife and children,
and you know, weighing things up about other aspects of life,
and the other thing that that I've really recognized is
to live and enjoy every day and live with hope
(13:25):
for the future, because I think in some ways as
a doctor, you you know, you try your best to
support and help patients, but it's different when you're you're
the person in the middle of it. And yeah, you know,
I don't It's not a criticism of anyone, it's just
life that that that's yeah, well for me anyway, And
(13:49):
there's different stages of the cancer journey that experts talk
about and and for me, I'm probably a bit slower
than other patients to get through and accept that you've
got cancer. Yeat obviously has caused grief and up and
up and down with yeah, with how I felt about
(14:11):
different aspects of my life. So yeah, it definitely hasn't
been a smooth sailing journey at times. But yeah, definitely
trying to make the most of every day and do
things that I enjoy and particularly with my family.
Speaker 2 (14:25):
Richard, it's been a pleasure to talk to you this morning.
Thank you so much for your time. And the book
is called Brainstorm. It is in stores now.
Speaker 1 (14:33):
For more from the Sunday session with Francesca Rudkin, listen
live to news Talks it'd be from nine am Sunday,
or follow the podcast on iHeartRadio.
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