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Who’s Looking After the Rest of You? | The Eye Believe Podcast · The Eye Believe Podcast

0:03
welcome back to the Eye Believe Podcast
0:04
you guys today
0:05
we're talking about who's looking after the rest of you
0:07
with fellow patient Ian who is from Australia
0:11
but he's also a primary care doctor in that region
0:14
so Ian
0:15
obviously
0:16
you're an OM survivor and a primary care physician
0:18
let's uh
0:19
let's talk a little bit well
0:21
I guess backtrack
0:22
if you want to hear more about Ian's story like
0:25
and his kind of
0:25
his cancer story as an ocular melanoma patient
0:28
um just kind of surviving that long middle
0:30
we did do an episode on that previously
0:32
you can go back and find that
0:33
we'll link that in the show notes
0:35
um but at the moment
0:37
right now we're gonna talk about PCP right
0:39
because many patients feel like once they have cancer
0:42
their oncologist is really like
0:43
their doctor for everything
0:45
is that actually how healthcare is meant to work
0:47
in your opinion
0:49
oh no obviously
0:51
um look I
0:52
I suppose I should just in case uh I
0:54
I get confused with the language and whatever
0:58
you know I'm an Australian
0:59
in Australia I'm a
1:01
a specialist GP so if we looked at the US equivalent
1:07
I would be considered a board certified
1:10
family physician which means
1:12
I've done extra training
1:13
in what would essentially be called primary care or
1:18
or generalist care whole lot of different names
1:21
and in addition to that I'm also a
1:24
a very much a rural doctor
1:25
so I
1:26
I sort of tend to look after people to a higher level
1:31
or a bit further and look
1:35
some people have seen that
1:36
I'm reasonably active on the OM groups
1:39
on social media and often I'll chip in with um
1:43
medical stuff even though yeah
1:45
I'm not providing individual advice
1:47
but
1:49
um from my perspective
1:50
you know
1:51
I come from a country where everyone's got their own um
1:55
primary care doctor their own GP
1:57
their own family physician
1:59
that sort of provides the majority of their care
2:02
and you know
2:03
for super specialist stuff
2:06
yeah sure
2:06
you'll be farmed out to an ocular oncologist
2:09
or a medical oncologist if you've got OM
2:12
but someone will still be keeping an eye on you
2:15
and that's not sort of the
2:18
the US system but
2:20
I suppose what concerns me is that people with cancer
2:24
often you know
2:25
for obvious reasons tend to focus on their cancer
2:28
but they tend to forget about
2:30
all the other bits of what's going on
2:32
and that can be you know
2:34
mental health it can be also about preventative health
2:38
you mean you don't want to go through all this stuff
2:40
and then have a heart attack
2:41
or something like that
2:42
so someone's gotta keep an eye on cholesterol
2:45
that sort of stuff yeah
2:47
Ian
2:48
what would you say is the difference between the two
2:51
well I mean
2:52
as a GP
2:54
like most of my colleagues or all of my colleagues
2:56
I know um
2:58
a little bit about a lot of things
3:00
um and
3:02
you know an oncologist would know
3:04
especially one that
3:05
that works in any particular areas of oncology
3:08
knows a lot about a very small area of medicine
3:11
and that's what they say see
3:13
day in day out
3:15
and the problem of course
3:16
of seeing a medical oncologist
3:18
as your primary care physician
3:20
is
3:21
if things start creeping outside your ocular melanoma
3:25
often sometimes they struggle with deciding
3:28
you know what to do
3:30
how to treat stuff and um
3:32
you know often
3:33
you know in
3:33
in my world and again
3:35
I'm not trying to denigrate US
3:37
medicine in any way shape or form
3:40
we end up hearing about people
3:42
that have a whole lot of different doctors
3:45
looking after very small parts of them
3:47
so it means no one's looking after the whole
3:51
that's such a good point and that's really like what we
3:54
what we wanted to talk about
3:55
when we were chatting about this episode
3:57
is this idea that someone has to be looking after like
3:59
that whole part of you um
4:01
so you mentioned a few things
4:03
that might kind of come up in the like
4:05
I'm gonna use myself as an example
4:07
cause that's easy right
4:08
um obviously I'm a metastatic patient and you know that
4:11
but um
4:12
there was a point in my care over the summer that I had
4:15
like full body hives
4:17
that we thought maybe were a medication reaction
4:19
but we weren't really sure
4:20
like you know
4:21
from an oncologist perspective
4:22
especially calling my on call
4:25
like after hours oncologist
4:27
I wasn't really given a whole lot of like
4:29
really solid things to do
4:30
because I wasn't considered emergent
4:32
so it wasn't like go to the emergency room
4:34
um
4:35
so I guess that was something that you pointed out as
4:38
like hey
4:38
this might be something that a primary care physician
4:40
or a GP would be able to better handle
4:43
um but like
4:44
you know from
4:45
from that perspective
4:46
and even taking it maybe one step further now
4:48
as a patient I'm like literally going down
4:51
I'm going down the list Ian
4:52
I'm not even joking I have like 12 doctors um
4:55
I have like 12 and it feels like okay
4:58
so who's pulling everything together
5:00
to make sure that we have um
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what's that phrase uh
5:02
continuity of care
5:04
who's making sure that we don't drop the balls
5:07
because sometimes it feels like it's just me
5:12
and that's right and I mean I um
5:15
in our health system in Australia
5:17
and it'll be the same in UK
5:19
and same in Canada as well
5:21
where it's largely the GP
5:24
the the family doctor that does that longitudinal
5:29
continuous care of people
5:31
um whereas
5:33
you know the US system seems to be
5:37
everyone's got their cardiologist
5:39
their oncologist their gynecologist
5:41
they've got people looking after
5:43
very small bits of them um
5:46
now look I
5:47
but there
5:48
there's nothing particularly wrong with that system
5:50
other than the fact that your health outcomes actually
5:53
aren't as good
5:55
and you spend a whole lot of money
5:59
providing you know
6:00
the most expensive care in the world in the US
6:03
and that's you know
6:05
what happens in you know
6:06
when you look at the the figures from around the world
6:09
and a lot of that is due to um
6:12
the lack of of primary care doctors and yeah
6:16
and look talking about your case
6:18
I mean I could treat hives
6:21
without actually looking up how to treat it
6:24
um and I
6:25
I remember sending you a list of hey
6:27
you might wanna try buying these
6:29
most of them are available
6:30
from the the corner drugstore or whatever whereas um
6:34
your oncologist
6:35
probably hasn't seen hives for many years
6:37
or thought about hives as a reaction
6:40
yeah for sure
6:41
well and like I
6:42
I think that you know
6:43
it sounds really like I mean
6:45
you talk about you know
6:46
the the PCP or the GP the
6:48
the general practitioner family
6:49
family doctor like
6:50
they're somebody who trains in
6:53
kind of nearly every body system
6:55
and so you're used to looking at the whole
6:58
as opposed to just individual pieces
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and so it's easier for you to connect the dots
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in some ways not every time
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like obviously
7:04
specialties have their place
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um but I
7:07
I do think that you know
7:08
if we're looking at managing cancer or even just
7:11
just not even let's
7:12
let's backtrack to
7:13
not even necessarily managing metastatic cancer
7:16
let's you know
7:17
maybe focus a little more on
7:18
like if you're a primary
7:19
primary tumor patient you've been diagnosed
7:22
and now you're just in surveillance
7:25
like um
7:26
I think that one of the things you mentioned was that
7:28
you know sometimes patients in surveillance especially
7:30
um who maybe aren't being scanned or like
7:33
having blood work and labs
7:34
and check ins with their medical oncologist
7:36
as often they might tend to bring all of their problems
7:40
to the medical oncologist
7:42
um and why
7:44
why do you feel like that's maybe less efficient
7:46
or less helpful to the patient
8:07
I suppose half the time
8:09
I mean sure
8:10
if it's around their cancer
8:12
um you know
8:13
obviously
8:14
medical oncologists are the best people to see
8:16
but most of the time people are complaining of symptoms
8:20
and of course once you've had cancer
8:22
you feel like every symptom that you've got
8:24
is related to your cancer
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and that you know
8:27
that's a that's a common occurrence
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but often you know
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someone
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like a primary care doctor will be able to sort out
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you know
8:36
what is related and what isn't related to cancer
8:39
I mean just
8:40
I mean
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everyone listening would have those sort of experiences
8:43
that they you know
8:46
so something happens and they immediately think
8:48
you know their mind immediately leaps to
8:51
to a a cancer going on
8:53
but in reality most of the time it is just something
8:57
something different which could be simple
8:59
or it could be something quite complex
9:01
you know I see
9:03
and most of my colleagues in general practice would see
9:07
rare things everyday
9:09
rare things are actually quite common
9:11
in our line of work
9:13
it's just the individual rare things
9:16
I wouldn't see that often
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like I mean
9:18
I've got I think I've got one patient in my cohort
9:22
of more than 1,000 patients
9:23
who's got a melanoma um
9:26
and most of my colleagues wouldn't have that
9:29
so I suppose I can bring that depth to it
9:32
and
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I've got numerous other patients with rare conditions
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but I don't have you know tens
9:40
20s hundreds of
9:41
of patients with that one condition um
9:45
and that's sort of the way that that uh
9:47
general practice works
9:50
yeah so like
9:51
some of these health issues that
9:52
maybe oncology wouldn't necessarily focus on
9:55
and understandably so um
9:57
what are what are some of those health issues that um
10:00
you feel like would be useful
10:02
like to keep an eye on
10:03
let's like I guess let's give like
10:04
maybe three specific examples
10:06
that maybe you've seen in practice
10:08
or maybe you've had a cancer patient
10:09
but you're seeing them as their
10:11
as their general practitioner
10:15
well I mean look
10:17
let's let's
10:18
you know start with the basics
10:19
I mean you know
10:21
ensuring that people's immunizations are up to date
10:25
um you know
10:26
if you're a cancer patient um
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you do have some issues with your immune system
10:31
particularly if you're on um
10:34
you know immunotherapy chemotherapy
10:36
that sort of stuff so ensuring your
10:38
your immunizations are up to date
10:40
because the last thing you wanna do is um
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you know
10:43
get seriously unwell from things like influenza
10:46
or covid or whatever
10:48
um so
10:49
you know that's simple primary care stuff
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um I'm also hoping
10:54
obviously the oncology team
10:56
mentions the importance of immunizations
10:59
but you know
11:00
skipping around a bit um
11:02
you know there's evidence based
11:05
you know preventative and health screening type stuff
11:08
um you know
11:09
cervical cancer screening
11:10
bowel cancer screening um
11:13
in Australia we just got lung cancer screening as a
11:16
as a population based uh type um
11:20
check up um
11:21
and breast cancer screening
11:23
the the commonest things do happen commonly
11:26
just because we all happen to have a rare cancer um
11:29
out there
11:30
doesn't mean you're not going to unfortunately get uh
11:33
one of the common ones as well
11:36
um the other things to think about are
11:38
you know long term cancer survivors
11:40
particularly those that have had
11:42
you know
11:43
radiation therapy and also some forms of chemotherapy
11:47
are more prone to other diseases
11:48
so ensuring that you're keeping an eye out for that
11:52
and you know it's unfortunate that
11:56
you know a lot of us will have had a lot of
11:58
of cat scans and some people I know of have had
12:01
you know 30 or forty cat scans
12:04
which is a significant radiation load
12:06
so thinking about well
12:08
do we actually need to start thinking about
12:11
you know do you need some sort of monitoring
12:13
to make sure you're not developing some sort of
12:15
radiation induced problem
12:19
yeah no
12:19
I mean I'm just thinking through like
12:21
health issues
12:21
that I've seen family members struggle with like
12:24
I mean even things like managing high blood pressure um
12:27
diabetes or pre diabetic like
12:29
obviously you mentioned heart disease um
12:31
I think you mentioned mental health earlier
12:34
I would I would argue even like
12:35
maybe looped in a little bit with mental health
12:37
like sleep like I
12:38
I think that cancer patients especially
12:40
we can definitely struggle with falling asleep
12:42
anxiety that causes us to struggle to fall asleep
12:46
like all of those pieces yeah
12:48
I mean um in Australian general practice
12:51
probably about 15% of my presentations
12:54
would be people with mental health problems
12:57
depression and such like
12:59
and that sort of stuff is much more common in
13:01
in cancer patients and because we see so much of it um
13:06
we're you know
13:07
fairly good at treating it um
13:11
either by talk therapy or by medication
13:14
or combinations of them um
13:16
you know referring to therapists
13:18
who have really good contacts
13:20
with allied health professionals
13:22
as well and
13:23
and often it's part of that team based care
13:26
I mean and look
13:27
when you've got cancer
13:28
you want that team wrapped around you
13:29
and I think one of those team members needs to be a
13:32
a primary care doc
13:34
one of the issues when you
13:35
you've got cancer and you're thinking
13:37
every symptom is due to cancer
13:40
obviously
13:41
if you're seeing your oncology team all the time
13:45
it sort of keeps that cancer
13:48
very much at the front of your mind
13:50
now I can understand that as a cancer sufferer
13:54
someone who's been through it
13:57
but not everything is about the cancer
13:59
and you know
14:01
there is a a transition that you go through
14:03
from diagnosis to that long middle
14:06
we talked about last time
14:08
and part of that is
14:11
not having the cancer at the forefront of your mind
14:14
for every waking moment
14:16
and seeing a non oncologist also
14:20
I think helps with that process
14:22
so that you can talk about the cancer
14:25
but you can also talk about other things
14:27
that are concerning you
14:28
and getting some reassurance that hey yeah
14:32
this is likely to be something different
14:35
and let's work on the the something different because
14:39
yeah the cancer is
14:41
you know there's no evidence of disease at the moment
14:43
we know that
14:44
so let's figure out what's going on together
14:49
I mean I think that's such a good point
14:51
um and I think ultimately like
14:53
our quality of life as cancer patients
14:55
if we are consistently absorbed and like
14:59
basically cancer has taken over our whole life
15:01
our quality of life is lower
15:02
right and
15:03
I mean not just from a mental health standpoint
15:06
but I mean
15:06
just chronic stress like
15:08
all of those different things
15:09
lack of sleeping like
15:10
if you're constantly feeling paranoid
15:11
that your body isn't safe
15:13
and you can't come to I don't know
15:15
some kind of an equilibrium almost like
15:17
where you can just accept like OK
15:19
had cancer was treated and like
15:21
and and to
15:22
to be frank like
15:23
I don't feel like we're necessarily talking
15:25
to every single metastatic patient out there
15:27
right because
15:28
because if you're metastatic
15:29
obviously it's a little bit more dire feeling
15:32
there's a like
15:33
you know
15:33
there's different phases of the metastatic journey
15:35
that might be a little more hmm
15:37
yeah maybe we do bring that to the oncologist
15:39
because now
15:40
we're to a point that it's no longer just surveillance
15:42
and it's not just the potential of spread
15:45
it's active spread so
15:46
we're not necessarily talking about those people
15:48
all of the time but I do think there is still room for
15:51
cancer shouldn't take over your whole life
15:53
um but I think one of the things that um
15:56
I've loved like
15:57
chatting with you a little bit about is um
16:00
like just preventative things right
16:01
like preventative care for staying healthy period
16:04
not just around your cancer
16:05
like that's so much bigger than just like
16:08
for example like
16:09
we know ocular melanoma historically likes to go
16:12
if it's gonna metastasize
16:13
to the liver and the lungs
16:15
okay
16:15
but if you're having scans of the liver and the lungs
16:17
what gets missed
16:18
there's a lot I'm assuming like
16:20
I don't know all the things
16:21
I'm assuming you know
16:22
many of the things that get missed
16:23
if that's all you look at
16:24
well it's not so much missed
16:26
but also there's huge dangers with doing
16:32
and I don't know about elsewhere
16:35
but there's now they're widely advertising in Australia
16:39
full body MRIs
16:41
and the whole problem with that is you find what um
16:46
I call or we call incidental omas
16:49
things that you found incidentally
16:52
um oma
16:53
well yes
16:53
it's a it's a mass or whatever um
16:56
which will never have any effect on your life um
17:02
other than causing you anxiety when they're found
17:05
and the problem with finding these things is
17:08
sometimes you need to well
17:10
someone says we better biopsy that
17:13
and then unfortunately
17:14
sometimes you get complications from having the biopsy
17:17
about things that you never
17:19
never needed to be found never needed to worry about
17:23
so I'm not a huge fan defintiely a catch 22 for sure
17:26
for sure yeah
17:28
I'm not a huge fan of doing very intensive imaging
17:33
looking for the tiniest amount of
17:36
what possibly could be ocular melanoma spread
17:38
because sometimes
17:40
there's more risk of harm from doing these scans than
17:44
um just looking for things that happen commonly
17:50
and I mean that's
17:50
that's something I know as a doctor
17:52
but it's really hard because people think oh
17:54
I've got a cancer I've got to find it
17:56
and then I've got to cut it out and treat it early
17:59
um the issue with that is that statistically I
18:03
I know it doesn't make a huge amount of difference um
18:06
which might sound bizarre
18:08
and I'm not trying to to minimize
18:10
you know people's own journey um
18:13
but it it's terrible
18:16
losing a whole lot of your life to anxiety about um
18:21
your health condition
18:21
about things that you can never change
18:24
and I mean
18:24
that's the problem with anxiety
18:25
it's about yeah
18:26
worrying about the future
18:28
yeah for sure
18:29
well and
18:29
and it I think
18:30
you know you bring up a good point
18:31
and obviously everybody's opinion is gonna be their own
18:34
um and again
18:35
we're not exclusively giving medical advice here and
18:38
like we know that
18:39
but you know
18:39
speaking as patient to patient
18:41
and also like
18:42
just Ian's background like
18:43
I do think that it's worth considering
18:45
right like
18:45
I mean I've had scanxiety
18:47
I think we all understand what that feels like
18:50
and it doesn't feel great
18:51
um and I can't
18:53
I can't even count the number of patients that I know
18:56
who have had you know
18:58
regular routine scans
18:59
and ended up finding something that turned out to be
19:02
not cancer um
19:04
and especially like for
19:05
for people who I think
19:06
live in the camp of like
19:08
maybe lower risk of spread
19:10
like I can just
19:10
I can just imagine like
19:12
that doesn't feel good and I feel like there
19:14
there could potentially be a point that
19:16
you know if you
19:17
as a person can get to that place where you can accept
19:19
okay we can only scan so much before it starts being
19:23
like a net um
19:25
challenge you know mentally
19:27
emotionally physically
19:28
any of those kinds of factors
19:29
um but I do think that
19:31
one of the things I like about the idea of
19:33
you know preventative health
19:35
preventative care like around
19:36
like having a primary care physician
19:38
you know aside from monitoring
19:40
outside of just normal cancer surveillance um
19:43
is that like there's
19:44
there's some real value to staying healthy right
19:47
like as a person
19:49
going into the potential like
19:50
even if you are a lower risk cancer patient
19:53
and you maybe you're like a class 1 prame negative
19:56
you have the lowest risk of metastasis
19:58
but it's still only going to be a net benefit
20:01
you know benefit to you to stay healthy right
20:04
to not develop diabetes or to have heart issues
20:06
like all of those kinds of health issues
20:08
that are just kind of classic
20:11
normal things that we would want to
20:13
to stay healthy as people
20:15
all of those things can compound
20:17
to result in someone responding better to treatment
20:20
or being able to tolerate it better
20:22
like do you feel like that is
20:25
I don't know like
20:26
something that a PCP can help kind of navigate
21:00
well absolutely
21:02
I mean
21:03
a lot of being a PCP is about preventative healthcare
21:07
so looking after people's
21:10
you know lifestyle exercise
21:12
mental health um
21:15
taking their blood pressure
21:16
and actually doing things about it
21:18
if it's consistently too high um
21:21
making sure they're not developing diabetes
21:23
and not on going down that track
21:25
but if they do have high blood pressure
21:27
and they do have diabetes
21:29
making sure that it's really well controlled
21:31
to reduce the risk of you running into trouble from it
21:34
later on I mean
21:36
these are common diseases um
21:38
throughout the world and um
21:41
it's something that PCP's really um
21:44
look after really well because it's so common
21:47
and there's a whole lot of medications
21:50
and treatments out there
21:51
that reduce the risk of you running into trouble
21:55
with things like heart attacks and strokes
21:58
I mean if you look at
21:59
at what people die from
22:00
one of the advances about modern medicine is
22:03
we've done a whole lot of
22:05
reducing people's risk of developing
22:09
you know cardiovascular disease
22:10
having those heart attacks
22:12
because we have so many good treatments now
22:15
for high blood pressure and for diabetes
22:19
similarly you know
22:20
we've reduced cancer rates for um
22:23
you know lung cancer
22:24
because we're now telling people
22:26
you know don't smoke
22:27
and that sort of public health message is really
22:31
well out there we've reduced survival cancer rate
22:34
simply because now we have really good screening
22:37
and really good immunization around it
22:40
um so there's a whole lot of
22:42
of great stuff happening the issue with all this is
22:45
you know people do have to die from something
22:47
and there are some things that we actually
22:49
can't prevent I mean
22:51
cancer itself is a disease of aging
22:53
as your body breaks down the ability to repair cells
22:58
so sometimes these cells just get carried away
23:01
and do their own thing
23:02
which essentially is what cancer is
23:05
I feel like that's a really unique way to look at it
23:07
I don't think I've ever heard it that way
23:09
um okay
23:10
so let's switch gears a tiny bit
23:11
let's pretend you're an ocular melanoma patient
23:15
you who is listening um
23:17
and you haven't seen a primary care physician
23:20
or a family doctor in I don't know years
23:23
maybe months because you got ocular melanoma diagnosed
23:26
and then it was treated
23:27
and then it felt like cancer took over your life
23:30
Ian what would be your advice to somebody like that
23:33
like for how to kind of catch a PCP up
23:36
and not feel so overwhelmed by the daunting process of
23:39
kind of telling them everything
23:42
um well
23:44
I think that's a good thing about
23:45
you know being a PCP
23:46
we've got a great skill
23:48
of getting a history and a story from patients
23:51
and we don't necessarily have to do that in one hit
23:54
but I think you know
23:56
virtually every town has PCP's
24:01
and talk to your friends um
24:04
get some recommendations as to
24:06
to who's good and who they see
24:08
and um
24:11
I mean family members as well would
24:14
some of them must have PCP's out there
24:16
um find out who you feel comfortable with
24:19
just like um
24:20
you know not everyone gets along
24:22
with every doctor they see
24:23
hundred percent of the time find
24:25
find someone that you do feel comfortable with
24:28
and come in and have a chat and say
24:30
hey look I'd
24:30
I'd like a bit of a check up
24:32
you know I've got a whole lot of health conditions
24:34
one of which you may never have heard of
24:38
um taking a step sideways I
24:40
I love going in to see a new optometrist
24:43
and not telling them what's going on in my eyes
24:46
and sort of someone takes a photo and goes
24:50
uh have you had something done here
24:53
um yes
24:54
so that's that's
24:56
that's what I do for fun
24:59
oh my goodness
25:00
well that's super funny
25:01
so as um
25:03
as a patient is you know
25:04
finding a PCP that they you know
25:06
they drive with
25:06
they feel like this is a good doctor for them
25:08
a good fit what would you say
25:10
you know as a PCP yourself or a general practitioner
25:13
what's kind of
25:14
some of the information you would want to know
25:15
from someone's like
25:16
treating or surveying oncologist
25:19
whether it's ocular oncologist
25:20
or the medical oncologist
25:22
like what's kind of
25:22
the most important information you feel like
25:24
needs to get transferred like doctor to doctor
25:28
um most oncologists would be really good at
25:31
effectively communicating with colleagues
25:35
um the things I'd
25:37
I'd want to know would be um
25:40
you know essentially
25:41
what's going on what's the treatment
25:44
um particularly
25:45
you know rare cancers like
25:47
like the one we're talking about here um
25:51
the nature of its spread
25:52
and what sort of surveillance plan is going on
25:56
if they're metastatic and they're on treatment I
26:00
or if they're on some form of adjuvant therapy
26:03
to reduce the risk of metastases
26:05
I'd really like some sort of details
26:07
about the side effects of the drug
26:10
um but probably most importantly
26:13
the surveillance program
26:15
because often what will happen is
26:17
after a couple of years in
26:19
in Australia the environment I work in
26:21
I'll just get handed over the surveillance program
26:25
and you know
26:26
I've got systems to ensure that's carried out
26:28
and obviously if it shows something
26:31
they get sent back to the oncologist
26:33
um
26:35
it's also probably a whole lot cheaper too
26:37
to see one of us guys
26:40
I mean you have a fair point
26:42
and we in the US know that healthcare is not cheap
26:46
yeah it's been a fun time this year
26:47
I feel like you've been watching like you
26:49
it feels like you guys in the rest of the world
26:51
have probably felt like I don't know
26:53
to feel like you're watching a crazy reality TV show of
26:55
like survivor of the Americans
26:58
yeah we
26:58
we turn in every
27:00
we turn on every night to see the latest episode
27:03
oh yeah
27:03
it's a fun time um
27:05
but I mean I
27:06
I do really feel like I'm
27:08
I feel like it's just
27:09
since talking to you I feel like I see the value of um
27:13
having a primary care physician
27:15
and like
27:16
for those of you guys who know my story
27:17
like I'm
27:19
I wouldn't say heavily metastatic
27:21
but like
27:21
I'm definitely metastatic like
27:23
and I can still see the value of why it would be
27:25
you know why it's helpful
27:27
um and
27:27
you know in my case
27:28
you know maybe I don't necessarily see um
27:31
a primary care physician
27:32
but I do have somebody in my care team
27:34
whose job is the whole me
27:36
not just one part of me
27:38
and I feel like that's definitely something that
27:41
I think allows for at least in metastatic care
27:44
I feel like it's the one thing
27:46
that allows for the possibility of synergy
27:49
like looking for
27:50
the ways that treatments can complement each other
27:52
and that they can kind of help each other out
27:55
and I feel like that synergy is something that
27:57
ultimately is achieved
27:58
by having someone whose sole job is looking at me
28:01
from head to toe not just one section of me
28:04
or one body part or one body system
28:09
but it's also not just you
28:10
it's you and your family
28:12
that's why they call us family doc
28:14
so it's it's you and your relationships
28:17
and that involves you know
28:19
the people you live with other family members
28:21
your community you work
28:23
how does how does your cancer affect your work and
28:27
and such like
28:28
you know it's
28:29
it's the ability to uh
28:31
and what I suppose we want is people getting on
28:35
and living a normal life
28:36
which does involve doing things around the house
28:39
having fun working
28:43
that sort of stuff like doing the things around
28:46
you know the fact that cancer exists
28:48
because obviously
28:49
whether you've been diagnosed
28:51
metastatic or not like
28:52
cancer exists for you it's part of your
28:54
it's part of your life
28:55
it's something that you can't forget
28:57
probably because you have some level of vision loss
28:59
or vision is affected
29:00
um but I
29:02
I mean I
29:03
I totally I totally see the value in making sure that
29:07
you know yes
29:07
of course like
29:08
oncologist there to help treat the cancer
29:10
if that becomes necessary like
29:11
you know especially once your eye has been treated
29:14
but you know
29:15
having that primary care physician
29:16
as someone who can help you live that happy um
29:19
happiest healthiest life
29:20
like around that cancer
29:22
I feel like that's so valuable
29:24
um and I
29:24
and I think it comes down to that acceptance piece
29:26
for sure yeah
29:28
and I think I think visual loss is a good point
29:30
because I look
29:31
I don't know about you
29:31
but I've got a focus to really pick up my visual loss
29:38
and I know you're monocular
29:40
but you don't think about your visual loss all the time
29:43
you just this is normal vision for you
29:46
hmm yeah
29:47
for sure I mean
29:48
but I'm also 35 or 34 so like
29:50
that's probably part of it too
29:52
is that I'm young enough that hopefully
29:53
my vision isn't going yet
29:56
but what I would also say is that just like
30:01
everyone will be familiar with it you
30:02
you get you adapt to your vision
30:04
I think it's also part of
30:05
we've got to adapt mentally to our cancer
30:08
and not think about it all the time
30:10
and not notice it all the time
30:12
just like we don't notice that visual loss
30:14
hundred percent of the time
30:16
yeah for sure
30:16
I mean it
30:17
it's absolutely something that
30:19
I mean I
30:20
I feel like every patient has some degree of
30:23
they've been able to adjust
30:24
like
30:25
contrary to maybe what they thought going into plaque
30:27
or proton beam therapy or even enucleation
30:30
um
30:30
I think a lot of us in the community are familiar with
30:33
Clay um
30:34
Clay Butler who he trained
30:36
he trained to be monocular
30:38
like he patched himself
30:39
he surfed like
30:40
with one eye he practiced
30:42
just like almost like as a way to prove to himself that
30:44
OK sure
30:45
Cancer's gonna change this part of me
30:47
but it's not gonna change what I can do
30:50
exactly yeah
30:52
alright well Ian
30:54
if you could give a new patient
30:56
someone who is recently diagnosed
30:59
they're not metastatic I'm hoping
31:00
you know they're just recently in
31:02
in
31:02
involved in this journey as an ocular melanoma patient
31:06
um if you could give them one piece of advice
31:08
both as a patient yourself and a primary
31:11
primary care physician what would you say
31:15
I think you know
31:16
having a cancer diagnosis is
31:19
obviously gonna dramatically affect your life
31:21
but it doesn't mean your life's going to end um
31:25
not immediately and hopefully not for many
31:29
many years
31:30
don't let it affect you on a day to day basis or
31:36
resist the temptation to let it do that
31:39
talk to people talk to your family
31:41
talk to your friends talk to your doctors
31:44
find a good therapist someone that you can actually
31:47
uh debrief with um
31:50
reach out to other Om people
31:52
we've got a great community out there
31:54
talk to people who've been through this before
31:57
um information um
32:00
provided the information's valid and correct is
32:03
is really good and really powerful
32:06
um resist the temptation to just Google wildly
32:09
I think is probably also my advice
32:13
yeah for sure
32:14
oh man
32:15
Google
32:16
hmm it's a
32:18
it's a good time but uh
32:20
I don't know I got told
32:21
don't Google and that was definitely hard to do
32:23
it's like telling someone
32:24
don't look at the elephant in the room
32:26
um but I do think
32:28
you know six years and you're what 15 six
32:30
15 years into your journey
32:32
yeah 13 14
32:34
yeah yeah
32:35
I mean I think you've got a good amount of experience
32:38
understanding that while the internet has expanded
32:40
and more information is available
32:42
that doesn't necessarily mean it's helpful to us all
32:45
in the the moment that we're yeah
32:47
now I can anxiety now I can ask chat GPT or
32:51
or Claude to to give me
32:52
the answer to everything and tell me what to do
32:55
well and it
32:56
it's just you know I
32:57
I think that it comes down to
32:59
understanding the value of
33:01
kind of I don't know
33:02
all things in moderation maybe like
33:04
just that like
33:05
these can be helpful tools to a degree
33:08
to an extent like
33:09
to the to the extent that we use them properly
33:13
or we use them the most effectively
33:15
be it as you know
33:16
doctors using chat GPT and like hopefully
33:18
you know
33:19
being able to put all the heads together digitally
33:22
to make everything come together faster
33:24
that would be the the theory
33:26
but also um
33:28
I don't know like
33:29
we just we
33:30
I feel like there's just so much value in what you said
33:32
about like
33:33
connecting with other patients
33:34
and talking to other people
33:36
and getting like
33:36
real person to person experience
33:38
like I feel like we don't want to lose sight of that
33:40
yeah and look
33:42
these podcasts are absolutely great
33:45
um going to um
33:48
the patient retreats are also really good
33:51
and
33:52
um yes I
33:53
I love going to the the ones in the US
33:56
I've just noticed
33:56
there's another one coming up in the UK
33:58
as well so
34:00
and we occasionally have them in Australia
34:04
yeah these patient seminars
34:05
I mean we obviously
34:06
you know that we do the Eye Believe seminar
34:08
so that happens in usually October um
34:10
sometimes late September but um
34:12
we have the Eye Believe seminar
34:13
with the A Cure In Sight I know there's
34:15
you know a number of other seminars
34:16
either in um
34:17
like you said the UK
34:19
I've seen um
34:19
things in Canada I mean
34:21
there's definitely opportunities
34:23
and sometimes they're not even uveal melanoma specific
34:25
and they can still be beneficial
34:27
um like
34:28
I think I've seen some patients going to
34:29
like retreats for like
34:30
younger patients diagnosed with ocular melanoma
34:33
um like
34:34
there's just so many value
34:35
are
34:35
so many valuable ways to connect with other patients
34:38
and and I do think that um
34:40
that still is so valuable anyway
34:42
we kind of got off on a little bit of a Tangent
34:44
but yeah
34:45
that said
34:46
apart from seeing your PCP
34:49
your best friend
34:49
advisors are often people who have the same disease
34:52
who are on that journey as well
34:55
um because they've been there
34:56
they've done that they can talk about their experiences
34:59
yeah for sure
35:00
they're experts and yes
35:02
we're all like
35:03
we become experts in our own disease sometimes by
35:05
I don't even know osmosis
35:07
like we absorb all the information like a sponge
35:09
when we go to those doctor's appointments
35:11
but I just want to thank you again
35:12
for being a guest on our podcast
35:14
and just
35:14
sharing your insights about primary care physicians
35:17
and just helping remind us
35:18
that it really is very valuable
35:20
as an ocular melanoma patient
35:21
to make sure that we
35:23
have someone who's looking after the rest of us um
35:25
not just focused on the eye
35:27
or surveillance for metastatic disease
35:30
um so Ian
35:30
thank you again for being here
35:31
and huge thanks to our sponsors
35:33
for making the podcast and our YouTube channel possible
35:36
um and we will see you guys next time