Latest / The Eye Believe Podcast / My 15 Years | Episode 3: Ocular Melanoma 101 & My Treatment Experience

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My 15 Years | Episode 3: Ocular Melanoma 101 & My Treatment Experience · The Eye Believe Podcast

0:05
hey everyone
0:06
welcome back to melody's
0:07
fifteen years of ocular melanoma
0:09
we are going from start to finish
0:11
through the last fifteen years with melody
0:14
and in this episode
0:15
we're gonna talk about understanding ocular melanoma
0:17
what ocular melanoma is from a patient's perspective
0:20
what she knew versus what she knows now
0:22
and misconceptions and some other topics
0:25
so let's get into it
0:27
hello melody
0:28
hi thanks for having me back
0:32
so let's talk about what is ocular melanoma
0:34
for someone who's new to the diagnosis
0:36
or maybe doesn't understand it
0:37
give us sort of a nutshell version of what is it
0:41
so ocular melanoma is cancer of the eye
0:44
but it's melanoma of the eye
0:46
so there are other cancers in the eye
0:49
but they're not melanoma
0:50
so ocular melanoma is a melanoma in or on the eye
0:54
there it consists of conjunctival melanoma
0:58
which is on the surface of the eye
1:00
it's still considered ocular melanoma
1:02
but it's on the conjunctiva
1:03
which is on the surface it's a lot easier to be seen
1:07
those are the melanomas that can look like a birthmark
1:10
or a red raised growth um
1:13
it's not the same as a squamous cell or a basal cell
1:16
that's on the eye or the eyelid
1:18
those are two completely different things
1:20
the other type of ocular melanoma
1:21
is the kind that's inside the eye
1:23
and that's the type i had
1:25
it usually involves the retina
1:27
can have some vision distortions
1:29
and that is choroidal melanoma
1:31
and then there is also ciliary body melanoma
1:34
that is closer to the front of the eye
1:37
it's still inside the eye
1:39
and then there's iris melanoma
1:41
and that is the melanoma that grows on the iris
1:43
you can usually see that as well
1:45
because it's a little bit of a color distortion um
1:49
some black freckling or black dots into the
1:52
the iris and that is the melanoma
1:55
that's growing in the iris area
1:58
all of those together are ocular melanoma
2:01
but they all are distinct
2:03
based on where they're growing at
2:05
so um
2:07
we use the term ocular melanoma
2:09
as a catch all for any melanoma that is involved in
2:13
or on the eye
2:15
okay and what did you know about it
2:17
when you were originally diagnosed
2:20
when they first told you nothing
2:23
i had worn glasses no
2:24
i had worn glasses since i was ten years old
2:27
um nobody had ever said anything
2:28
about anything i had going on inside my eye
2:31
nobody said
2:32
i should be watching for something in my eye
2:34
uh it was just
2:36
you know go in and get glasses and leave
2:38
so i was i didn't know anything about any eye diseases
2:42
right and then
2:44
when you were first getting into the diagnosis
2:46
and kind of learning how long did it take you to like
2:50
learn
2:51
not obviously not as much as you know now
2:53
but
2:53
kind of learn everything you felt you needed to know
2:58
a long time because it's when you're first diagnosed
3:02
you get that shock you're like
3:03
what the heck is this
3:05
how do you get cancer inside your eyeball
3:07
you know it's like
3:07
it just doesn't compute with you
3:10
and then you start picking things up
3:11
because they keep using the same phrases like um
3:16
ocular melanoma uveal melanoma
3:19
uveal melanoma is the inside parts of the eye
3:22
uh and
3:23
it took me a long time to understand the differences
3:25
that they while they were distinctively different
3:28
it all was a catch all bucket of ocular melanoma
3:31
so we the terminology was a little harder for us to for
3:37
or for a patient to grasp
3:38
you know you're
3:39
you're like well
3:40
what is it exactly that i have
3:41
i mean conjunctival is pretty easy
3:44
iris is pretty easy but when it goes in the inside
3:47
ok i have uveal melanoma
3:48
where is it you know and
3:49
and cause
3:50
there's a lot of different parts of the eye
3:52
that most of us don't even know
3:54
because it's not really covered in anatomy in school
3:57
you know you know
3:58
you got an eye you know
3:59
you got a retina and you know
4:00
you got a pupil but other than that
4:02
all these other pieces and parts
4:03
you're like why
4:04
i don't know anything about that
4:06
right yeah
4:07
it's very true and then
4:08
you know there's a lot of medical terminology
4:12
aside from just the anatomy that you're learning
4:15
well there's
4:15
and all the testing that goes into it
4:17
that you don't even know that there
4:18
that it's even possible like
4:20
to do like
4:21
an ultrasound on the top of your eye
4:24
they told me they were gonna ultrasound my eye
4:26
and i'm like you can't do that
4:27
you know don't touch my eye
4:30
and you know
4:30
they're running this little ultrasound wand over the
4:33
the surface of your eye and you
4:35
it's kind of a freaky thing because
4:38
i don't know most people my age
4:40
at least were told not to put anything in your eye
4:43
don't stick anything in your eye
4:44
it's bad you know
4:46
um it was a bad thing to have a needle
4:48
or anything stuck in your eye
4:50
and now all these people
4:51
are doing all these things to your eyes
4:53
and it's very concerning because it's your eye
4:57
you know and
4:58
and this is gonna sound funny
5:00
but this is what i kept thinking
5:02
that my eye was gonna deflate
5:05
and i don't know why but i kept
5:07
i kept having this mental image of my eye deflating
5:12
and like
5:13
if you stick it it's gonna go like a flat tire
5:16
and obviously
5:17
yeah exactly
5:18
but that's not true but that's where my brain went
5:22
it's like well
5:23
you can't do that to my eye
5:24
it'll go phew
5:25
then it will have an eye and then what will i do
5:27
and they're like that's ridiculous
5:30
well
5:31
hahaha
5:33
so take go back to cartoons
5:35
what happens to people's eyes when
5:37
in cartoons when something happens
5:39
their eyes you know
5:40
i mean they don't melt in a gory way
5:41
but you've seen cartoons where their eyes kind of
5:44
that's where my brain went
5:46
that's funny so okay
5:48
let me just pause you real quick
5:50
when they did the ultrasound of the eye
5:53
they do it on your open eye
5:54
like on the actual eyeball
5:57
i've had it done both ways
5:58
i've had it done through the eyelid
6:00
and i've had it done on the actual open eyeball
6:02
they have this they have these clamps ok
6:05
so let you're you're laying back in a chair
6:08
very much like a dentist chair ok
6:11
and they put your head back
6:12
and they have these little metal clamps
6:14
that they put in and it reminds me
6:17
cause i'm visual it reminds me of those halloween um
6:20
dracula teeth that yeah
6:22
do that except it's metal
6:24
and it does kind of look like that
6:25
they stick it in and it holds your eyelids open
6:28
so you can't blink your eyes just open
6:31
and your eyeballs just kind of hanging out there um
6:34
and they put um
6:36
some drops in numb the surface of your eye
6:41
and then they do the ultrasound on that way
6:45
sometimes they do it through
6:47
they'll have you close your eyes
6:48
and do it through the eyelid
6:50
i always assumed that they did it through the eyelid
6:53
so that's fascinating i did not know that
6:56
it's pretty freaky
6:57
in the beginning you want to start rubbing something
6:59
over the eye i'm like ooh
7:01
i don't i don't think i like that yeah
7:04
yeah oh
7:05
that's crazy ok
7:06
who would have thought that they can put some
7:09
some something in an iv in your veins and
7:13
and then they can run a test on your eye
7:17
to see the blood vessels in your eye
7:19
it's called a fluorescein angiogram
7:22
and they do they put that
7:23
that's one of the testings that they do
7:25
to find out if it is ocular melanoma
7:27
is they and they give you an iv
7:29
and they inject some dye and they wait a minute
7:31
and then they
7:33
do some little magic and they can see the blood
7:37
going through all the blood vessels
7:38
and all the stuff in your eye
7:39
and um
7:41
so that i i never heard of that
7:43
didn't know it was possible
7:44
had no idea um
7:46
that they could do that
7:47
there's also them taking the photos
7:50
the photos can be a lot because they take a lot of them
7:55
so you're looking in the machine and you have to blink
7:57
but not blink and um
7:59
you know the
8:00
the testing going through the process is
8:04
is kind of intense they
8:06
it's not you know
8:06
they yes
8:07
they look in your eye and they say yes
8:08
you have an ocular melanoma
8:10
but they have to back it up with all these other tests
8:12
so they have to do the photos
8:14
they have to do the ultrasound
8:16
they do the fluorescein angiogram
8:17
they do all of these things to
8:19
to definitively diagnose yes
8:21
it is an ocular melanoma
8:23
and each one of those i'd never heard of before so
8:26
so when they first diagnosed you
8:28
did they tell you which treatment you were gonna have
8:30
right off the bat
8:32
yeah i wasn't given any options
8:34
i was told i was gonna have a plaque brachy therapy uh
8:38
and it's a it's a little disc
8:40
a gold disc with radiation seeds implanted
8:43
and they put it on your eye
8:45
um i wasn't given any
8:47
any other options there were options available um
8:50
but a lot of that goes back to where i was located
8:53
and my insurance
8:55
that my doctors didn't give me any disservice
8:58
they didn't hide anything from me
9:00
it's just that that was what i was available to receive
9:05
there was no um
9:09
i didn't i just didn't have an option
9:11
so the the brachy therapy is pretty much the standard
9:16
in the united states and other parts of the
9:19
of the world as well because um
9:22
it's kind of the oldest and it's very well
9:26
proven to work
9:28
and there's proton beam
9:30
and then there's some other test
9:32
there's some other treatments
9:33
as well that aren't as popular
9:35
so proton beam would be the next
9:39
the next most popular treatment for it
9:42
i don't know that i would have qualified for it
9:44
because
9:45
you have to qualify for some of the other treatments
9:47
the brachytherapy
9:47
they can pretty much put that on anybody
9:50
they even have one that's notched
9:52
that can go um
9:54
on the optic nerve around the optic nerve
9:56
so that mean that is the most common and the most used
10:00
okay so let's talk about initial fears
10:04
because obviously
10:06
cancer's scary enough
10:07
much less having something put in your eyeball
10:10
especially something as big as a plaque and radiation
10:13
so let's talk about how
10:14
what did you feel like when they told you
10:17
and how did they tell you
10:22
um they told me that they would
10:26
that this was my treatment that um
10:30
that they would sew it in my eye
10:32
and i would um
10:33
because i was close to the hospital
10:35
i could go home with it in my eye
10:37
i had to stay away from anybody that um
10:41
especially children pregnant women
10:43
i had to stay six feet away from everybody
10:45
and that's pretty much all they had said um
10:50
in the initial the initial
10:53
you know talk about this um
10:56
after they decided this what they were gonna do
11:00
i had to go meet with the radiologist who was going um
11:03
they
11:05
through magic of mathematics
11:07
they decide how much radiation you're gonna get
11:09
and how long it's going to be there
11:12
um the ocular oncologist does not decide that
11:14
the radiation pathologist does
11:16
i think it's a pathologist um
11:18
he does that so he's the one who's um
11:22
gonna do all the math and work it up and say
11:25
this is how much radiation you need
11:27
and this is how many days you need it
11:29
then when they decide they
11:31
they know how big the plaque is gonna be
11:33
based on the size of your tumor
11:34
cause they've already measured it through um
11:37
through all the testing that you've had done
11:39
so they've measured it they know what size then
11:42
then right before surgery
11:45
was when they told me all the whys and wherefores
11:48
so they told me that um i had a very diffused melanoma
11:54
so my my melanoma was um
11:57
the bottom left kind of towards the back
11:59
when they put this on
12:00
mine was about the size of a quarter
12:03
um they
12:04
when they put it in there
12:05
it was going to cover the macula of my eye
12:08
which your macula is your central vision
12:10
so he told me at that time
12:13
that they were gonna have to cut the muscles
12:14
to put this in which that freaked me out
12:16
i'm just gonna say um
12:19
they're gonna slide the plaque in
12:20
and that i will most likely lose my vision
12:23
and it was all said very matter of factly
12:25
um
12:27
i didn't say anything at the time
12:28
but the thought of cutting my muscles
12:30
was a little creepy to me
12:32
cause i thought my eye would fall out
12:34
i'm a forty eight year old woman
12:36
i'm not stupid but
12:38
but you have all these childhood images
12:40
that come back to you and
12:43
and i thought oh
12:44
you cut my muscles how's my eye gonna stay in my head
12:48
it cause they only cut one
12:50
and there's other things that hold your eye in there
12:52
your eye does not fall out so
12:54
but but you're sitting in the chair
12:56
and they're telling you
12:57
all the stuff in your brain is just like
12:59
you know pinballing around with all these images
13:01
that you've seen your whole life
13:02
that really don't make any sense
13:04
and are not they're not real
13:06
but this is where your mind goes
13:08
your mind goes to something
13:09
it knows there's little triggers that pop up
13:11
these little images and oh my god
13:14
that makes me think of pirates of the caribbean
13:17
the guy that has the eye that always pops out
13:19
it goes rolling
13:21
that's what i thought was gonna happen honestly
13:24
i'm not i'm an intelligent woman
13:26
i'm not but that is really what i thought
13:30
i thought oh my god
13:31
you know and i went home with um
13:34
the plaque radiation and a lot of bandage packing on it
13:38
and i i had
13:41
everybody has something different
13:43
when i had mine in i did not ever take off the bandages
13:47
or insert any drops or ointment
13:49
it was sealed and when i went in to have it taken off
13:53
it was still sealed and
13:55
and which is a good thing
13:56
because i i thought if i took it off
13:59
i really thought oh my gosh
14:00
how is my eye gonna stay in my head
14:03
um i never said anything to my doctor about it
14:05
because i thought well
14:06
that just sounds ridiculous
14:07
but 'cause i was
14:08
i was i went back and forth between the common sense
14:11
oh melody
14:12
you're just being silly to the fears that i
14:15
that just kept creeping up in my head about what
14:18
what was going on with my eye
14:20
you know i was gonna have a deflated eyeball
14:22
that was gonna fall out and roll on the floor
14:24
and then what was i gonna do
14:28
so so there's
14:30
but there's you know there's
14:31
there's a couple of different things that happen
14:33
you have you have the part of your brain that
14:36
that understands and knows and
14:39
and okay
14:39
this makes sense and this is rational
14:42
then you have the other side of your brain
14:44
that is not rational
14:46
that has all these little fears that
14:48
that gnaw at you and
14:49
and even though you tell yourself oh
14:52
you're being ridiculous it's still there
14:54
fifteen years later
14:55
i still remember that feeling of thinking
14:58
i'm going to have a deflated eyeball that will fall out
15:01
and and it
15:02
it's it's not logical
15:04
but that's where your your brain is not always logical
15:08
yeah i
15:10
i agree with you i think if i had it all packed and
15:14
like all concealed
15:16
i don't think i would take it off either
15:17
i think i would be afraid to look at it
15:20
no but there are some physicians that will
15:23
send patients home with drops and ointment
15:25
and they have to every day put drops and ointment in
15:28
and i
15:29
i'm grateful that i did not have to do that
15:31
because i did not want to see it
15:33
i did not want to do it i didn't want any part of that
15:36
but i didn't know any better
15:38
because that wasn't part of my protocol and um
15:41
luckily it just stayed sealed until
15:44
till i had to go in and get it taken off
15:46
so i was grateful for that
15:48
it worked out better for my mental health
15:51
what was your pain like with it
15:54
so i had um
15:57
i couldn't lay down when i
15:59
so if i tried to lay down
16:00
my head just throbbed
16:02
i felt like it was just gonna explode
16:04
so i slept in a reclining position
16:08
like on i slept on the couch um
16:10
kind of sitting up ish
16:12
and if i sat still and didn't move
16:17
i didn't have any pain
16:19
if i tried to watch television and
16:21
you know television can be bad for some people
16:24
depending on where their plaque is
16:26
because you're you can't help but your eye tracks and
16:30
and the television moves very quickly
16:32
so your eyes constantly tracking and
16:35
and it would pinch and it would throb
16:37
and it would hurt really badly
16:39
so i just kept i sat there with my eyes closed
16:42
and tried really hard not to move my eyes
16:44
and as long as i did that
16:45
the pain was tolerable i could handle it with tylenol
16:49
getting up walking around was difficult
16:52
because you want to look where you're walking
16:54
you know you feel unsteady
16:56
you've gone from two eyes to one
16:58
and monocular vision is a lot different
17:01
so you feel a little unstable
17:04
you feel like um
17:06
you know you don't really have control
17:09
uh some people
17:10
i shouldn't say everybody
17:10
but i that's how i felt
17:12
and i've heard other people say the same thing
17:13
so i stayed in a very in a very small area
17:17
and i didn't move around much
17:19
and it was okay but
17:21
there were times when the pain was more than i wanted
17:24
and i did take pain medicine for it um
17:28
because it was just kind of an ache
17:30
an aggravating ache in there
17:32
but when i would move my eye
17:35
and i would get those excruciating shooting pains
17:39
from the the plaque was basically pinching
17:42
you know the muscles just kind of in there
17:44
and it's not attached to the eye anymore
17:46
and things aren't where they're supposed to be
17:48
so i would get these
17:48
in these very intense pinches that were very painful so
17:53
but for the most of the time
17:54
it was tolerable it was like a dull headache
17:57
do most people get their eye muscles cut
17:59
or is it kind of just dependent
18:02
depends on where they have to put the plaque
18:03
not everybody gets the muscles cut
18:05
just depends
18:06
some people get both muscles cut
18:08
some people don't have any
18:10
the the
18:10
the really tricky thing with
18:12
with this cancer being in your eye
18:15
it depends on where the ocular melanoma is in the eye
18:18
depends on where they put the plaque
18:20
and some locations the
18:22
the radiation doesn't destroy the vision
18:25
some places they don't have to cut the muscles
18:27
you know it just all depends on
18:30
um the
18:31
the location how big the plaque is
18:34
how much radiation is in there
18:36
so there's all these variables
18:38
so the what
18:39
where mine was and how i felt
18:41
is not always transferable to somebody else
18:44
what about the fear of the radiation itself
18:47
because you're being told
18:48
that you have to stand
18:49
six feet away from another person but it's in your head
18:53
it's very scary
18:54
what about your own brain and your other eye
18:57
and how did how did you feel about that
19:01
well we go back to the melting eyeball hahaha
19:04
i got
19:06
that's where my brain went
19:07
my eyeballs gonna melt this can't
19:09
how can it handle this um
19:11
but i i
19:13
i have never been able to get a good answer
19:16
as to why i have to be six foot away from somebody
19:18
but this is in my own brain
19:20
but it's not affecting my
19:21
my head in any way um
19:24
yeah i
19:24
i don't have an answer for that
19:26
other than to me
19:27
it was very scary
19:28
because i thought it was going to melt my brain
19:30
i might have brain damage
19:31
i thought oh no
19:33
you know what else is it doing in there
19:36
um but it has been proven to be very safe
19:39
and it does not affect the brain
19:40
it does not affect your teeth
19:42
it does not affect other things um
19:45
and it does not hurt your eye um
19:48
that's why there's a limit on
19:51
how much radiation they can give to your eye
19:55
i don't understand
19:56
why people have to be six foot feet away from you
19:58
i think it's just a precaution
19:59
cause it's radiation but honestly
20:02
the amount of radiation in your eye
20:03
isn't enough to cause any damage to a brain
20:07
or to the surrounding tissue
20:09
um fifteen years later um
20:11
my brain is the same as it was then
20:15
which is neither good nor bad um
20:18
but i don't uh
20:20
the the
20:20
you know i haven't had any problems with my
20:24
with anything surrounding
20:25
and i had a fairly um
20:28
i had a fairly large plaque they
20:31
they've done larger so
20:33
i mean i was
20:34
i was kind of that middle ground
20:36
so i i
20:37
it doesn't it hasn't affected anything
20:38
some people think it affects their teeth
20:41
um but it's
20:42
it doesn't and
20:43
cause
20:43
you would have to have your plaque facing downward
20:45
and mine was in the back more so facing outward
20:50
so it's it was shooting out though
20:53
not shooting there's no shooting
20:54
but you know the
20:55
the direction of the radiation was pointing
20:59
out of my eye not into my head or
21:02
you know in any way
21:04
so i just
21:06
that's why they tell people to stay six feet away is
21:10
i think just cause of it coming out of the eye
21:13
but i really don't have an answer for that
21:16
yeah that's so interesting
21:18
like the way that they figure out what they can do
21:21
and how they can do it safely
21:23
is just really fascinating
21:25
well they had to do it with trial and error
21:27
which is really scary because
21:28
i would hate to be the person that was on the trial
21:31
but they they
21:32
they did the trials on the
21:34
it's called a COMS study it was done in the eighties
21:36
and uh
21:37
if you wanna go read on that
21:39
that that's pretty fascinating to read
21:40
but they they experimented with
21:42
you know how much was enough
21:44
and they keep they keep tweaking it
21:45
they keep looking and saying like
21:46
you know what if we use less radiation
21:48
you know so
21:50
they're constantly working on
21:52
exactly how much radiation is needed
21:54
to kill the tumors
21:55
and keep the eye as healthy as possible
21:58
so crazy so how
22:00
how many days did you have your plaque on
22:02
five five
22:05
and then when you went in to get it taken off
22:07
what was that like
22:10
relief
22:12
um you go in just like they're gonna
22:15
i i went in
22:16
i was i had regular surgery in their surgical suite
22:20
um i was under general anesthesia
22:22
some people are not depends on your physician and your
22:26
uh your hospital or treatment center
22:29
some of them use a twilight sleep
22:31
um i was one hundred percent out um
22:34
so i had to go through the anesthesia recovery process
22:37
and honestly that was tough
22:39
um i don't do well with
22:41
with anesthesia we've discovered um
22:43
i'm i'm a hard one to wake up
22:45
and it takes a while for me to get it
22:47
to get it out of my system
22:49
um they want you up and moving
22:51
and i'm still no
22:52
i'm sleeping uh
22:53
and so that you know
22:55
and i say crazy things and do crazy things
22:58
nothing just silly stuff that they laugh at
23:01
um but the anesthesia part was tough
23:04
but once they got the um
23:07
they took the plaque out now
23:09
i hadn't been anywhere in five days
23:11
you know i've been
23:12
went to the hospital checked in
23:14
had my plaque went home
23:15
sat on the couch
23:17
go i went in
23:18
got it taken out and i'm ready to go
23:20
and i'm like whoo
23:20
i'm free so
23:22
the first thing that we did was we went and had lunch
23:26
and i just was i felt like i could be normal again
23:29
so that's all i could tell you
23:30
it was relief um
23:32
my eye didn't really hurt anymore
23:35
um it wasn't comfortable
23:37
but it you know
23:38
my eye wouldn't open
23:39
so i was going around with my eye closed and um
23:42
i didn't care i just wanted to be normal again
23:44
i wanted to go shopping i wanted to go out to eat
23:46
i wanted you know
23:47
i just wanted to be in the world again
23:48
cause
23:49
i was not the type of person who liked to be at home um
23:52
for five days and not able to go anywhere
23:54
so that that was a hard part
23:57
i didn't feel like going anywhere
23:58
but after the plaque i
23:59
i just felt like i was me again
24:02
yeah that's totally understandable
24:04
i mean i feel like that sometimes after i have a cold
24:08
yeah you know hahaha
24:10
like oh
24:12
i have energy again i can go do things
24:14
i'm a person again so i
24:16
i can only imagine yeah
24:18
you feel like oh
24:19
this is it's behind me
24:20
i'm done huh
24:22
you know i'm
24:23
i'm human again i feel like me again
24:26
and i just wanna be normal again
24:27
and that's kind of the direction i went
24:30
let's just go do something normal
24:32
um last place i wanted to go was home
24:37
and how long did it take after the procedure
24:41
before you got some kind of results
24:42
as to whether it worked or how well it worked
24:46
um it takes a long time
24:48
because you have to go in and be monitored
24:49
so i went i had the plaque out
24:52
i went in the next week they looked at it
24:54
everything looked fine
24:55
and then i went in for my regular
24:57
scheduled appointments um
24:59
and they were every three months
25:01
and they just monitored the growth every three months
25:04
to make sure that it was doing well
25:06
and mine was shrinking and it was doing well
25:09
and so then after one year of every three months
25:13
i went i graduated to
25:15
to yearly
25:17
so it it's a multiple months of watching
25:22
to make sure that there is no regrowth
25:25
and what are you on now
25:27
year is it still yearly
25:29
it's yearly yeah yeah ok
25:32
alright everyone that's all for this episode
25:35
please stay tuned
25:36
because we will bring you lots more episodes this year
25:39
we're gonna talk to melody all throughout this year
25:41
about her fifteen year journey
25:42
so please stay tuned for next episode
25:44
we'll see you then