Latest / The Eye Believe Podcast / When Breast Cancer Meets Ocular Melanoma | The Eye Believe Podcast

Transcript

When Breast Cancer Meets Ocular Melanoma | The Eye Believe Podcast · The Eye Believe Podcast

0:03
hey everyone welcome back to the Eye Believe Podcast
0:05
we have a special episode this month we have a panel of
0:08
ocular melanoma and breast cancer survivors
0:11
with us today in honor of
0:14
Breast Cancer Awareness Month so welcome ladies
0:17
I'm gonna give you an opportunity to each introduce
0:19
yourself Barb would you like to go first
0:22
I'm Barbara Johnson and I live in Salt Lake City Utah
0:27
and I had ocular melanoma 11 years ago and breast
0:34
cancer four years ago
0:36
Sharlene would you like to go next
0:39
sure
0:40
my name is Sharlene Carlson and I live in Palo Alto
0:43
California
0:44
I was diagnosed with um with breast cancer in uh
0:49
around December 2013 so
0:52
and got treated in in early 2014 so that's uh
0:57
thirteen and a half years ago something like that
1:00
and then I got diagnosed
1:02
11+ years ago with ocular melanoma um it uh I had
1:09
lumpectomy and radiation for my breast cancer
1:12
and I had proton beam radiation for my ocular melanoma
1:17
and Elizabeth
1:19
um I was diagnosed with uh breast cancer
1:23
on D Day of 2002
1:27
and I had another recurrence three months later
1:32
and then in 2004 I had another recurrence
1:38
and underwent bilateral mastectomies at that time
1:43
and then three weeks later I was diagnosed
1:45
with ocular melanoma
1:48
and then since then I've been diagnosed
1:50
with several other cancers
1:52
wow
1:54
that is really a lot to have them that close together and then several
1:57
other ones
1:59
it is yeah of course
2:02
right well thank you ladies for being here today
2:06
thank you for spending the time with us
2:08
the first question that I want to ask is
2:10
what has it been like belonging to two different cancer
2:14
communities I mean that's such a
2:16
such a thing to be involved with one but two
2:19
what's it like and what are the differences
2:21
you find who would like to go first
2:23
well I can go um because I
2:26
I've been involved the longest with communities um
2:30
early on I was quite involved
2:32
with the breast cancer community
2:35
and of course there are resources
2:38
everywhere there's no shortage of resources
2:42
for breast cancer
2:44
but then when I was diagnosed
2:46
with ocular melanoma there really wasn't very much uh
2:50
available there were no online groups at that time
2:55
and what
2:55
what has happened to me personally over the years
2:59
is I'm no longer involved with any breast cancer
3:03
groups either in real life or online
3:07
but I'm very involved with ocular melanoma
3:10
and I'm also involved with the congestive heart failure
3:14
community um and and that's
3:18
at the woman's heart failure community and specifically
3:22
I I think the most challenging
3:24
thing for me was learning all the different
3:29
like four years ago the genetic markers
3:33
for breast cancer the medications
3:36
the treatment options it was challenging to
3:43
make decisions about about care because I was given
3:47
um a number of options
3:50
and as the genetic testing came back and the
3:55
markers were identified in another
3:59
MRI every step of the way my treatment options
4:03
changed so I found that challenging um
4:09
because I was pretty familiar by then with the ocular
4:13
melanoma
4:17
treatments genetic markers medications
4:20
treatment options things like that so
4:24
I was learning a whole new cancer language
4:28
how about you Sharlene
4:31
well you know you you get me thinking
4:32
about this because mine were you know
4:34
fairly close together
4:36
was a little more than a year apart from diagnosis
4:39
I was in working in a very stressful work environment
4:43
which I always think you know
4:45
kind of could have contributed somewhat to it and um
4:51
I found I was gonna comment on the people
4:53
around me so when I had breast cancer everybody
4:56
was very supportive and um
4:59
many people know I mean I think it's like one in a nine
5:01
women get
5:02
get it and and maybe the even less than that now um
5:06
and so people understood
5:08
what it was that I had and I took time off work for my treatment and all that
5:12
and then a year later I was I'm
5:13
another year later I get this weird cancer
5:15
that nobody has any clue what it is and it just didn't
5:18
I just looked at me like okay you're just a this cancer
5:21
patient and
5:22
we just don't even know what to say because we've never even heard of it
5:26
um in the beginning I started participating in a cancer
5:30
support
5:30
group for breast cancer that a local organization had
5:33
and I did various
5:35
things like they had a guided
5:36
imagery group and you could come in and you know get
5:40
one on one consultations with folks and
5:43
and so I I really tried to focus on on the health and
5:47
wellness aspects of thing that I could that I could do
5:50
and um then when I got ocular
5:53
melanoma in the beginning I didn't know anybody
5:55
you know my my people that I was connected
5:57
with for the breast support um
6:00
were supporting me but they didn't know anything
6:01
about it and it took six months before I
6:05
Learned through a friend knowing a friend that there
6:09
were these support organizations
6:11
that the physician I initially had gone to had not
6:13
you know connected me in any way like that
6:15
and um I was so grateful to find the the um
6:20
the Facebook group that Elizabeth facilitates
6:23
because I was then connected
6:25
with you know a thousand plus people around the country
6:27
or whatever so I felt like
6:28
for for the first six months I felt so
6:30
alone I didn't feel that with breast cancer because um
6:35
everybody knew and they were getting they were getting
6:36
I was almost overwhelmed with all the treatment options
6:39
I I chose you know to have radiation and
6:43
I mean a lumpectomy and radiation
6:46
but you know because I I was caught early so um and
6:49
and with the with ocular melanoma it's sort of like
6:52
there's only one person who could treat me
6:54
locally and it's like I had to go to
6:56
San Francisco and Davis California to get proton
6:59
beam and and it all happened so fast that I I didn't
7:03
I felt like I didn't
7:03
know all this information of what was even going on
7:06
after I looked some stuff up afterwards
7:08
and I was like oh my god they just did this to me
7:10
you know but it was hard to it was hard to to grasp and
7:14
so but I have stayed connected
7:15
more with the with the ocular melanoma group because um
7:20
I mean first of all I'm pretty far
7:22
I mean I'm blessed that at my
7:24
number of years out I do not have metastases
7:28
for either one so that's
7:29
one thing I didn't never have to go into a metastatic
7:31
group um
7:33
but I think it's just weird to have a rare
7:36
one and a common one and I find myself
7:39
advocating for the the rare one and you know posting
7:43
information about it on Facebook or telling everybody
7:46
that I know that I have this because if I say I have
7:49
breast cancer a lot of people have that this
7:51
this this other one is something different and I think
7:54
maybe it makes me rare I like to think it makes me rare
7:57
and that's fabulous but um
7:59
it's just very different and and the information and
8:04
support that's available to you just as a patient is
8:06
is different um and and and the
8:11
just the craziness of it all of
8:13
like how did I get this you know
8:16
so I I
8:18
I celebrate the fact that I'm I've had both and I've survived
8:21
both
8:23
but but
8:23
they were different different things to survive for me
8:27
because of uh the available support and the um
8:31
all the available information
8:34
yeah that makes a lot of sense especially
8:36
from like an advocacy point of view for
8:38
um you know everyone knows to get a mammogram
8:41
not everyone knows
8:42
a dilated eye exam can save your life
8:45
right my my breast cancer was detected in a regular
8:49
mammogram so I guess we should put that out there too
8:52
you know so that I knew that I could get that because
8:56
the information is out about this I had no
8:58
idea I could get melanoma under my retina
9:01
you know anyway
9:03
my breast cancer was also detected by routine mammogram
9:09
how about you Elizabeth were yours routine I had um
9:12
I had a lot of breast biopsies over 25 years previous
9:17
so I always knew I was at high risk
9:19
because I had precancerous markers in the breast tissue
9:24
and I had a lump and dimpling
9:27
and when I went for the when I went for the diagnostic
9:30
mammogram
9:30
which is a little bit different than a routine um
9:34
I did ask
9:35
the radiologist if I could look at the mammogram
9:37
with him and he said I could
9:40
and I looked at it and I said um I have breast cancer
9:45
he said yes you do cause I knew what to look for
9:48
and I pointed it out and he said well you are correct
9:51
and so you know I knew but no I had lumps every time
9:56
one other thing I might mention
9:58
when when I got my my eye cancer diagnosis my breast
10:02
cancer surgeon freaked out thinking
10:03
maybe she had missed something because
10:05
I didn't have the the you know whatever the
10:09
criteria would be to get BRCA testing which I
10:12
get you know there is sort of a
10:14
as I understand there's a correlation if you are
10:17
have a have the BRCA gene
10:18
you're more likely to get breast
10:19
cancer and you're more likely to possibly get ocular
10:22
melanoma so she had me tested
10:23
after that and I don't have that so I truly had two
10:27
independent cancers with no
10:30
explanation of how they might link
10:33
so I was like I need to get out of this job
10:38
which I eventually did but anyway
10:40
and Barb and Elizabeth
10:41
would you guys like to add anything
10:43
to just what it's like to be in one that's so common and one that's so rare at the same time
10:50
well mine
10:53
I don't see I know one of your questions
10:55
was are there any similarities
10:57
and I really don't see similarities um
11:02
it's just different um
11:07
we all
11:08
there's so much breast cancer awareness and so much
11:11
support
11:12
but there's so little for ocular
11:14
melanoma there was almost there was none in 2004
11:18
when I was diagnosed so I I truly was
11:21
alone for a long time with that diagnosis
11:25
other than my family I really didn't have any support
11:28
and people would would say well it's only your eye
11:31
yeah it's only my eye
11:33
you know um
11:35
take out your eye and you'll be fine
11:37
well that's not how it works
11:39
um so it it really it it was totally different
11:43
totally different
11:44
I I find my attention being split between
11:50
two cancer communities so I don't feel like I can
11:54
not that I participate in any online forms or anything
12:00
but just keeping abreast of
12:02
you know when something comes across
12:05
on treatment or on diagnosis I like to
12:12
keep abreast of that information and so it's um it
12:19
I have to concentrate
12:22
on one and then I'll have a ocular
12:24
melanoma follow up and then I
12:27
concentrate on that it seems like I have trouble
12:31
um not to trouble but I don't um
12:35
think of both cancers simultaneously very often
12:40
I go back and forth depending on
12:44
what's what's happening what's the priority
12:49
yeah that's a lot to juggle
12:50
yeah it
12:51
it is difficult when you're still being followed
12:53
for more than one cancer
12:55
I'm at the point now where the only cancer
12:59
that I have regular follow up on is the ocular melanoma
13:04
all my other cancers have been
13:06
longer than 10 years so I no longer
13:09
have follow up for those yeah me too
13:13
and so it's that's the case with me too
13:14
yeah that that makes it a little easier
13:17
yeah that's great
13:19
so now let's talk about what is it like to
13:24
get that second
13:25
cancer diagnosis how did that feel when you've already
13:28
been told you have cancer
13:29
you've already gone through this earth
13:31
shattering life changing news
13:33
and then they hit you with another one
13:36
well for myself
13:38
I can say I always expected breast cancer
13:41
it was no big deal
13:43
I mean I don't like to say it was a walk in the park
13:46
but I never cried once I just didn't find it
13:51
a big deal and I went on with my life it didn't impact
13:55
me a lot I made jokes about being boobless
13:59
that just didn't bother me
14:01
I had never heard of eye melanoma
14:05
and when I got it it was like
14:08
you hit me over the head with a sledgehammer
14:11
and I just started crying
14:16
I called my I was a school nurse I called
14:20
my school principal I said you aren't gonna believe this
14:23
but I have fucking eye cancer and he was like what
14:24
but I have eye cancer and he was like what
14:28
and it's impacted my life a lot
14:32
um
14:33
I've always been paranoid
14:35
about my vision cause I have very poor
14:37
vision to begin with I have my grandmother's eyes
14:41
and I've always been paranoid ever since I read Helen
14:46
uh Helen Keller's biography in second grade
14:50
so going blind is a really major fear of mine
14:54
and um ocular melanoma was just
14:58
very very difficult to deal with and I did cry a lot
15:01
yeah absolutely
15:03
I think my second cancer diagnosis so both of you had
15:08
cancer two cancers relatively
15:12
close to each other but mine was eight years apart and
15:17
ocular melanoma was more devastating
15:21
when you start to learn about the prognosis so 11 years
15:24
ago I was told there was you know a 50%
15:29
rate it probably hasn't changed that much
15:33
of metastasis and
15:36
20 I think it was about 27% chance
15:40
that you'll live 10 years
15:42
and that was that was pretty um devastating so
15:50
getting
15:51
breast cancer then eight years later I felt like well
15:56
there's good they caught it early there's a good chance
16:00
um
16:01
that it can be controlled um
16:04
the follow up isn't really lifelong
16:08
I just have to make it five to seven years and um
16:13
so I was not quite
16:17
I wasn't happy about it but I wasn't devastated by
16:20
breast cancer diagnosis
16:53
well I guess I can say for myself um
16:59
it it's like it happened
17:00
it happened so fast I can I can remember I I had
17:04
squirted you know the soap that you have like you they
17:07
said get it somebody
17:08
give me some soap it had scrubbing beads in it
17:10
it bounced on my I was taking a shower it bounced in my hand it hit my eye so
17:14
I actually had a corneal abrasion so I went to the
17:17
the eye doctor was the um um
17:21
optometrist not ophthalmologist and
17:25
and she did a dilated exam and said you have a lesion
17:28
under your retina and it needs to be dealt with
17:31
and she hooked me up with a retina
17:32
specialist who happened to have a
17:34
had had a cancellation I'm walking
17:36
you know the neighbor next room over and he was gone he
17:39
I had these pictures taken
17:40
he was gone the longest time I thought what's going on here
17:43
and he came back and he told me I had this and he was
17:47
you know referring me to someone in San Francisco to treat it
17:50
and I said can I just go to Stanford and he said
17:54
there's no one at Stanford who can treat you and
17:56
of all the experiences
17:57
I've ever had I almost fell off my chair
17:59
at that point in time like what do I have
18:02
that there's not even this local
18:04
expert there is now but that that time there was not
18:08
and I thought oh my god because I
18:09
I have a background in public
18:10
health so you know I knew I could get breast cancer
18:13
I didn't know I could get melanoma under my retina
18:15
and I asked the guy is this a death sentence
18:18
and he didn't answer haha you know so I thought
18:21
oh my god um and
18:23
so I go up and you know I get these
18:25
they they treated me you know fairly quickly however
18:28
they they do to get you in and
18:30
but it I was I was like I was in a a daze
18:34
because they were moving so quickly that there wasn't as much information but I thought
18:38
I'm gonna die you know it came back that I had a
18:42
I was I'm class you know
18:45
many years ago they didn't have all these genetic
18:47
subclasses and stuff and I was a class
18:50
Castle 1 b which you have like a
18:53
I think it's a 21% chance of metastasis
18:55
by five years I had that data
18:57
so I knew that you know I wasn't in the riskiest group but I certainly
19:01
wasn't I didn't I had this thing and
19:03
and living and worrying about
19:06
do I have metastases
19:07
was something I was just gonna have to do probably for the rest of my life and I keep
19:10
I get scans every year
19:12
and it's like oh what is this
19:14
added burden in my life I gotta worry about and
19:17
people looking at me don't necessarily
19:19
know it same with with breast I mean I
19:22
you know you you you you can have these treatments
19:24
but somebody
19:25
looking at you doesn't think there's anything
19:26
wrong with you you know and
19:28
and they don't necessarily understand if I'd had
19:32
you know we we have a a a
19:34
a friend who like you know
19:35
she had her eyelid and everything
19:37
removed so sometimes you have people
19:39
you know with eyes removed or something so I had this
19:41
radiation treatment that
19:43
people couldn't see what I was feeling on the inside
19:46
whatever fear
19:47
I might have had you know I looked
19:49
okay on the outside but that
19:51
you know and now that I'm
19:53
over 10 years on both of these I feel like well it
19:58
I may not get metastases
20:00
I probably am not gonna get it from breast
20:02
and if I get it from the other I've lived this long and
20:06
I'm not young anymore
20:07
necessarily so I mean it's it's a different
20:10
I feel for the people who are like young mothers
20:12
that are you know dealing with all that and so
20:16
I guess I've gotten philosophical about it but I
20:19
the the support that I've been able to have
20:21
with being connected with other people in the country
20:24
and even around the world
20:25
who have this disease made me feel like okay um
20:29
I'm not alone
20:30
and I've felt so alone for so long even in
20:33
certainly in the very early diagnosis
20:36
when when I was told Stanford couldn't
20:37
treat me I thought oh my god what you know
20:40
I found out what it was like to have a disease
20:42
where you only have a regional specialist
20:44
whereas when you have breast cancer
20:47
there are all kinds of local specialists
20:48
who can give you some kind of treatment and
20:51
so it's kind of
20:53
with in life just putting that all together and and
20:56
accepting this is the cards
20:58
I'm dealt how am I gonna play them you know
21:00
I also had this feeling that I had survived so far
21:06
with ocular melanoma that um
21:11
that I and I tolerated the treatment fairly
21:14
well and I had a fairly good outlook and I thought
21:18
well I can I can do this again
21:21
while there's an overabundance of resources and
21:24
support for breast cancer
21:26
there's two parts of breast cancer
21:29
where that's not true
21:31
I had mastectomies without reconstruction
21:36
you do not get
21:37
supported for that people think you're crazy even your
21:40
even my surgeon said what
21:42
you don't want reconstruction
21:45
and there's very little support
21:46
for those of us who choose not to have reconstruction
21:50
the other thing there's very little
21:52
support of are men with breast cancer
21:55
there's
21:56
2,600 men every year diagnosed with breast cancer
22:00
they tend to be diagnosed later
22:03
because men don't get breast cancer but they do
22:07
and so they're not diagnosed
22:09
they have a higher mortality rate
22:11
very little support for men with breast cancer
22:14
I had a male um
22:17
I used to work for asthma camp in Minnesota
22:20
and one of the asthma specialists had
22:23
was a man with breast cancer
22:25
and he was told at a told at a Susan Komen walk
22:29
that he shouldn't be walking because he was a man
22:35
he had breast cancer
22:38
wow I mean I would think that anyone
22:40
would be allowed to come and walk in support of
22:45
a you can't wear a pink shirt oh really
22:49
yeah if you wear a pink
22:50
shirt it means you are a breast cancer survivor oh wow
22:53
okay so they told him because he had a pink shirt
22:56
that
22:58
that he um
23:01
that he should not be wearing a pink
23:02
shirt because he was a man
23:04
oh no yep
23:09
and it's still true today there's not a lot of
23:11
support for men with breast cancer
23:13
or a lot of awareness there
23:15
needs to be more awareness
23:17
because men should be doing breast exams also
23:20
yeah those are great great points Elizabeth I saw two
23:23
men
23:24
last night at the volleyball game who were bigger boob
23:26
bigger boob than I was when I had boobs so
23:30
they should definitely check it out thanks
23:34
it makes sense for sure and there are
23:36
some men that are born with more breast
23:39
tissue I actually know somebody
23:40
that went into surgery to have theirs removed because
23:44
it was just a little more than they wanted and right
23:46
so I mean they they do have breast
23:47
tissue it makes total
23:48
sense that they could get it but it's you know
23:51
like you said it's so rare that it's not talked
23:53
about and when things aren't talked about
23:55
we are not aware of them right
23:58
I thought I thought somehow as men aged
24:00
somehow maybe if they had prostate
24:02
cancer and they were given
24:03
various hormonal treatments
24:05
they I've seen men kind of grow breasts as they age
24:08
yeah men who are undergoing
24:09
prostate cancer can develop breast cancer yeah but um
24:13
there's a other younger men who also develop it
24:18
if they have the
24:19
the BRCA1 and BRCA2 gene affects men and women
24:23
and so the men who have that gene
24:25
have a higher incidence of breast cancer
24:28
that's great to know
24:29
I can't remember but I would like to talk about
24:31
Elizabeth has touched on this some just how much in
24:35
I I'm doing a shout out for
24:36
A Cure In Sight a little bit but how much information
24:39
I get overwhelmed I don't have metastasize there there
24:42
there's so much information
24:43
that's available to us through the various
24:45
websites these days when I first joined
24:49
um Elizabeth the group that Elizabeth facilitates
24:53
I mean you know there
24:55
there were a few things but it seems like there's
24:57
there's
24:58
the younger doctors are out there coordinating um
25:03
biomedical groups are funding
25:05
some of the research I mean I don't know if the research is coming
25:08
out of the federal government necessarily these days
25:10
but I get overwhelmed I you know
25:13
I think when I first started it's like
25:15
if I saw something coming through the website
25:17
it's like oh I wanna know this now I get overwhelmed
25:20
I don't have time to read it all so it's
25:21
it's it's a wonderful thing and it's
25:25
it's it's a lot of its patient driven I think Elizabeth
25:27
would you would you agree with that yeah I would agree
25:29
I mean in 2004 when I was diagnosed the only
25:33
thing there was was a mailing list
25:36
a mailing list works where you send an email
25:40
and it goes to everyone on the list
25:42
and then someone may or may not respond to your email
25:46
it's not there's no
25:48
immediate feedback like there is in a Facebook group
25:52
Facebook of course wasn't around in 2004
25:55
and that was the only online uh
26:01
place there was for ocular melanoma
26:04
there was no other resource
26:07
and now we've had an explosion of resources
26:11
which is good
26:12
we we almost have too many Facebook groups
26:15
um there's I'm overwhelmed
26:18
with how many Facebook groups there are and
26:20
some of them are not well run
26:23
and so there's a lot of spam and a lot of nonsense
26:26
that goes on
26:27
but there is a lot more available than there was
26:32
in 2004 and there's even a lot more
26:36
that has come up
26:37
I would say about 2,012 is when we started seeing
26:42
more resources available
26:44
and a lot of it is A Cure In Sight to be honest
26:48
because ocular melanoma
26:50
foundation they started out strong but they've kind of
26:56
gone by the wayside and they're just not
26:58
in the community anymore with any regularity um
27:02
I mentioned before that I I found out
27:05
that there were these
27:07
you know Facebook groups to connect with
27:10
with when when a friend of mine knew somebody
27:12
who had it I didn't find it out from the medical community
27:15
and um but I fairly early on got connected
27:19
with A Cure In Sight which was doing the I
27:22
met some people at the first um
27:25
Swing For Sight up in Napa and
27:28
and it was you know that was my was
27:30
the first time I really was with a group of people who had this disease
27:34
um
27:34
and it it it felt really wonderful so I I was then got
27:39
asked to to be a buddy
27:41
from time to time with somebody
27:42
who was going through something similar to me
27:44
I I have had several if somebody
27:47
asks I will always buddy with with somebody
27:49
call them and answer the questions and
27:52
I had I had a person
27:54
my age lived a mile and a half from me
27:57
who um had
27:59
was going to the same doctor
28:00
I was going to and it was just like
28:01
kind of this whole crazy experience
28:03
and I buddied with her and unfortunately she
28:06
she did not make it she passed you know we
28:09
we live with the fact that some of us are gone in a year and a half of diagnosis and some of us are
28:13
are still here but I think that the the
28:17
the ability to buddy to connect to resources
28:21
is really
28:22
um a wonderful thing that I know A Cure In Sight offers
28:25
I offer I you know there is now a doctor
28:27
at Stanford who Doctor Mruthyunjaya who's my doctor
28:30
and I make myself
28:31
available to them if they get a newly diagnosed
28:34
person that wants to talk to somebody
28:36
I say I'm representing A Cure In Sight
28:38
but you don't have to go through the loop you can
28:40
you know call me and I'll I'll chat with somebody
28:42
wants to you know because I
28:43
I know how hard it was in the beginning um
28:47
it it's it's great to be connected
28:49
through a Facebook group but it's also even better to just be able to talk to somebody
28:52
who's got the same disease definitely and so I
28:55
I I know I'm not the only one doing this but that
28:59
that is a wonderful uh thing that that the connections
29:02
we have have provided because you know so there it's
29:06
you know it's something like five six in a million
29:08
prevalence
29:08
or something so it's like you're not it's not
29:10
you look at your town you
29:12
may be the only one in town you know I mean so it's not like you're gonna go have coffee
29:15
with somebody necessarily so I think that's a that
29:19
that is one of the best things I think that's come out is
29:21
is the ability to really connect with people um
29:26
electronically but even even face to face and well
29:29
interestingly there's a woman in my I live in a small
29:32
very small town thirty five hundred people
29:35
in northern Wisconsin and when I moved here in
29:38
2 thousand twelve I Learned there was another
29:41
woman in town with the same diagnosis
29:44
so I connected with her she went to Doctor G in Boston
29:50
and she had adopted Doctor
29:52
G's philosophy which is if I put my head in the sand
29:55
this will go away and I don't have to deal with it
29:59
and she was she had no
30:00
interest she did not want to sit down and meet
30:03
she was not interested in joining my Facebook group
30:07
she wasn't
30:07
interested in doing any awareness in the community
30:11
and it just kind of shocked me to be honest
30:15
but there are people that are like that
30:19
cause I'm always willing to be your buddy also
30:22
but I'm up here in the boondocks so ha ha
30:25
I wanted to mention that education
30:30
recorded um sessions that
30:35
A Cure In Sight puts out so years ago
30:38
when I was diagnosed there was um
30:41
I got on the A Cure In Sight website and I think the um
30:47
sessions or the virtual conference was called
30:52
um I am not alone all right
30:55
and so I was watching those um
31:01
sessions to learn more about ocular melanoma
31:06
and I came across one um
31:09
session on genetics from Doctor
31:12
Damato who mentioned the BAP1 um
31:18
uh huh germline mutation
31:20
on one slide for like 20 seconds um
31:24
my sister had just passed
31:27
away from mesothelioma oh my gosh and so when I
31:30
saw the relationship between those cancers that
31:35
led me on a whole different path for genetic testing
31:38
did you get tested for the BAP1 then
31:41
I did and I do have it oh okay you do have it okay
31:46
yeah
31:48
yeah when I was diagnosed
31:50
it was just the castle classes
31:52
they didn't have all the sub genetic testing so
31:55
there it it's
31:56
it's very heartening to realize there's a lot of research
31:59
that's going on either by the biomedical companies
32:01
that are interested in it or maybe
32:04
I I
32:05
worry about what kind of federal funding
32:06
comes down anywhere it's an academic institution
32:09
these days cause they're always under threat of cuts
32:12
but um
32:13
uh yeah like I said in the beginning I
32:15
I was looking for information
32:17
now I get overwhelmed with how much is out there
32:19
yeah there was
32:20
no there was no genetic testing when I was diagnosed
32:23
yeah
32:25
yeah I know people who've had it for a long time they have no
32:27
idea cause it wasn't there I mean you we can assume
32:30
that we were low risk but we don't know that because
32:33
no you know some high risk people do survive so
32:38
so we either
32:38
were low risk or we were high risk and lucky so
32:42
and I don't know which is better myself
32:44
more knowledge is better
32:46
but sometimes ignorance helps also so
33:09
what do you guys do on the hard days
33:12
what gets you through
33:15
well I journal
33:17
I'm a big proponent of journaling I think it really um
33:21
is very therapeutic and I use just a plain ordinary
33:26
school notebook and a No. 2 Ticonderoga pencil
33:30
and I just write write write
33:32
and a couple years later I rip it up and throw it away
33:36
um the other thing I do is I do a lot of walking
33:40
I like to walk
33:41
those are both great for processing yep
33:45
and I live near the mountains
33:47
and have a women's hiking group so that's nice
33:51
call call a buddy and
33:55
go for a long hike so I can process the information or
33:59
whatever I'm worried about
34:03
well it's somewhat similar for me because I to me
34:06
nature is healing and if I get you know
34:10
I told you when that you know I didn't see it as
34:15
coincidental that I got these two diagnoses
34:18
very close together when I was
34:20
in a very stressful situation um
34:23
not that it caused it but
34:24
but you know it's like how do I keep my immune system
34:27
strong and and you know how can I and
34:30
you know fight things off so
34:32
I do a lot of going out and taking
34:34
pictures of flowers and some
34:35
you know we have cell phones
34:37
now that I can take a picture and then I can crop it
34:39
cause a lot of times when I'm looking at it I don't see that well out of my one eye
34:43
like I can't see if it how
34:45
if it's a good picture of a flower or a bad one but
34:47
and I so I make myself
34:49
into a cell phone artist I guess you would say
34:52
to try to say oh I couldn't
34:53
see that but now I can and that's really kind of pretty
34:56
you take you take beautiful flower pictures thank you
35:00
but it distracts
35:02
me you know what I mean it's like how do you distract
35:04
yourself somehow with all with all the
35:07
stuff so that that to me is um you know
35:11
reading something positive believing you can
35:13
you can do it um I think is um
35:17
nature nature is healing and
35:20
I I return to that on my hard days
35:24
definitely
35:25
and the next question I wanted to ask you is
35:28
how do you manage scanxiety we've talked
35:31
about that a bunch of times
35:33
going in for scans and having that anxiety
35:35
do you have any
35:37
words of wisdom for people going through that
35:40
well my one big advice is to always if at all possible
35:45
have your scans on Monday or Tuesday
35:49
because if you have it well Wednesday's kind of iffy but if you have it on Thursday or Friday you're going to wait
35:55
over the weekend
35:56
and there's really nothing worse than waiting
35:59
the waiting is what kills us um so I always
36:04
try to schedule my scans for Monday or Tuesday
36:08
and that helps manage my scanxiety cause
36:11
I know I'm gonna have an answer
36:13
within a relatively short period of time
36:16
and having patient portals
36:18
which weren't available years ago
36:21
that's at least for me that's helped me a lot
36:24
cause I can get my results before my doctors do
36:28
right
36:28
and I think I um
36:32
I I know in our Facebook
36:33
group there's a lot of people who are asking
36:36
for prayers you know because of scanxiety
36:38
I don't have it so much I guess I I look at it so
36:42
I'm at a point where I get a mammogram once a year
36:46
and I guess I'll do that for the rest of my life
36:48
and I get a a CT
36:50
with contrast of chest and abdomen
36:52
once a year to detect metastases from my eye
36:55
and I kind of look at I'm I'm I I I don't let myself
36:59
get too freaked out I you know
37:01
breathe deeply and all that but I figure that
37:03
it's information
37:04
that I have to deal with whatever is coming
37:07
and and in my in my two cancer diagnosis
37:11
the fact that they were detected early gave me a better
37:15
outcome I mean if I had not
37:17
had my breast cancer diagnosed in
37:20
in a mammogram and I was five years later who knows
37:23
you know I may or may not still be walking this earth
37:26
but um
37:27
and the eye thing is just kind of so so strange so
37:30
I you know breathing deeply calming
37:33
all that kind of stuff and I
37:34
I don't suffer dramatically with scanxiety
37:37
I think that I have kind of accommodated
37:40
over time because of
37:43
the BAP1 I have scans so frequently yes
37:49
so I'm always getting scans
37:52
and it's gotten better over time um
37:56
but the other thing that I always try to do is
37:58
whether I have good
37:59
results or bad results I give myself a little treat
38:03
a little reward just for going to do those scans
38:07
that's important yes
38:10
yeah BAP1 is huge that's a
38:14
it's a major
38:16
that would be something that would give you a lot to
38:19
be concerned about
38:21
I know I think that's why I get distracted yeah between
38:25
all the different
38:27
like I can only think so much about one thing
38:29
does anyone else have any BAP1 cancers
38:33
you said your sister had mesothelioma
38:35
you've got ocular melanoma any others
38:39
yeah um
38:41
my sister passed away with mesothelioma my other sister
38:47
um has was diagnosed
38:51
with mesothelioma two years
38:53
ago but has better prognosis
38:55
because they know more and she's also had
38:59
melanoma
39:02
and basal cells and I've had basal cells also
39:06
I was just thinking
39:07
I've had I've had basil cell way back when
39:10
and my sister had a
39:13
uterine cancer
39:14
when she was in her 30s and had her uterus
39:18
removed my father died
39:20
from metastasized prostate cancer I won't get that
39:23
but you know you look
39:25
like these familial things and then my mother
39:29
lived to 103 and never had a colonoscopy
39:32
or mammogram or anything
39:33
in her life and she just was a survivor so I mean
39:36
you you you don't know I just I just recently
39:40
I didn't know about the BAP1 connection
39:42
with basal cells we all get basal cells
39:45
I can't tell you how many basal cells I've had several
39:49
but people with BAP1 get more basal cells
39:54
and they also get them at a much younger age
39:57
and they get them even if they haven't had a lot of sun
39:59
exposure most of us get basal cells
40:02
because
40:04
we didn't have sunscreen when we were growing up now
40:07
we do but yeah um basal cells can be connected to BAP1
40:12
I think um from the BAP1 community
40:16
it seems like patients if they get basal cell um
40:20
so I had one tiny one I didn't find on my nose
40:24
and deep down it had gone
40:26
all the way down and around the side
40:29
so I think that's more common
40:32
like people end up with very large scars from their
40:37
basal cells
40:39
like on the surface they'll be a very small um lesion
40:45
but then when you go in for the mohs procedures
40:47
it seems like they can be very long yeah
40:49
that's what happened with my nose
40:51
I lost about half of my nose from a basal cell yeah
40:55
and I
40:56
I should say that I also we were talking about a a
41:00
diagnostic
41:01
test I get I see the dermatologist once a year
41:04
you know so it's sort of like I get
41:06
the cat scan I see the dermatologist they
41:08
you know I get the mammogram so those are all
41:11
cancer related too and we hadn't really talked
41:13
about that but I'm glad it came up
41:15
yeah there's a a lot to check on in the human body
41:18
for sure
41:20
that is true
41:22
it adds up it gets overwhelming for sure so
41:27
let's talk about what brings you joy what do you do
41:30
away from cancer that makes you feel like a person
41:33
without a diagnosis or just brings you some joy
41:37
well I know that you're gonna think I'm really weird
41:41
but I love to go to cemeteries
41:45
I just I love cemeteries
41:47
I like looking at the stones and imagining
41:51
who were who were these people
41:53
and who were these children
41:54
I especially follow children
41:56
I played Emily in Our Town the play Our Town
42:01
which takes place in a cemetery
42:03
so maybe that's what it dates back to I don't know
42:06
but I go to cemeteries
42:08
often a lot
42:11
um and I love walking in them I love doing the research
42:15
I love to imagine the stories
42:17
coming out of the cemeteries and
42:19
I'm a cemetery nerd what can I say everybody
42:22
knows it so ha ha they accommodate my weirdness
42:26
so I love to garden love to hike
42:31
ride my bike walk my dog
42:34
spend time with family and friends I'm a big
42:38
knitter and a big reader so
42:41
seems like I have lots of hobbies that gives me joy
42:47
well for me I I try to be creative because
42:53
I don't want to spend too much time in my left brain
42:56
analyzing
42:57
everything that's wrong with me because there's plenty
42:59
that's wrong with me at this point in time
43:01
so I try to you know do do a little bit of that so I'm
43:04
I'm gonna mention two things
43:06
I'm back to taking improv comedy classes
43:08
I'm not making this up
43:10
so you're just playing
43:12
I mean I have a bad back and bad
43:14
knee and all kinds of stuff but I find that when I'm um
43:18
creating and having fun I don't hurt as much
43:21
and so it's it's it's it again it's that kind of
43:24
don't focus
43:25
on what's wrong with you but just have fun and and
43:28
I mean I have to come home and just
43:29
rest after all that but it's I you know I kind of
43:32
I do that and
43:34
I I was gonna mention during covid I I wrote a post
43:39
every day for 365 days where I'd gone out and taken
43:43
photographs of flowers and various other things
43:46
and I posted on Facebook and I had about 50 people
43:50
and I would put do a quotation I would be
43:52
what's going on imagine it would be an eight and a half by
43:54
11 thing here's some pretty pictures
43:56
and so I was in this creative
43:58
mode and it distracted me from what was
44:00
what I was scared of and what was going on so those
44:04
you know finding
44:05
ways to be in to create something whether
44:07
maybe it's something you're cooking or
44:09
something you're sewing or something whatever just
44:11
just just getting away from the
44:13
the stress of it and and uh
44:16
getting creative is what you know keeps me going
44:20
those are all very beautiful
44:22
things thank you for sharing so
44:25
as we wrap up I would just like to give each of you the opportunity to
44:30
say anything
44:31
else that you would like to add or maybe just a
44:34
message you wanna share with the community for anyone
44:37
who's either new to the community or maybe
44:41
possibly facing two diagnosis so anything
44:44
else that you'd like to leave us on
44:47
Barb do you wanna go first
44:49
I think um a message of hope that there is life after
44:56
cancer you can live a pretty healthy life despite
45:00
having cancer and um
45:04
that I know it's life changing and there's
45:10
a lot of um requirements to keep yourself healthy by
45:17
attending medical appointments there's a lot of expense
45:21
but um to
45:24
to
45:25
look towards the future and it can be managed and it's
45:29
um is is something that you can get through
45:34
perfect how about you Elizabeth
45:37
well I'm gonna leave you with a story about my primary
45:40
care physician
45:42
um I was fortunate to have the same primary care
45:45
physician for all of my cancer diagnosis
45:48
she was my primary care doctor for 20 years
45:52
and she would always say to me each time I got a new diagnosis
45:55
I don't know how you do it
45:58
and every time I said to her I said Cynthia
46:03
it's cancer it's not ALS
46:06
and I truly believe that cause ALS is a death sentence
46:11
well I hope I can share this without crying
46:15
she called me one day
46:17
and she said I have to tell you before it's announced
46:21
by my clinic but I have ALS
46:25
and she had the very aggressive bulbar
46:28
type of ALS and she died very quickly
46:32
and it was really hard I mean it was very hard
46:36
so that's what I always
46:38
I mean yes lots of us do die from our ocular melanoma
46:43
and lots of us die from cancer but a lot of us don't
46:48
yeah nobody survives ALS
46:51
so that's what's gotten me through is
46:54
knowing it's not ALS
46:55
how about you Sharlene
46:57
well I've been thinking about one
46:59
we had I had a wonderful um
47:00
facilitator of a guided imagery group and she would always end
47:03
each
47:04
this this was more for breast cancer people but it was
47:06
you know whatever
47:07
she'd always end with never give up hope
47:10
and I think that is a guiding principle that is
47:14
out there for me and also savor
47:17
every day I mean you whether you get hit by a bus or
47:21
you know a
47:23
Uber ha ha ha yeah especially for
47:26
Waymo you know you just never know and so to so
47:30
believe that you have a long future and you're gonna have this wonderful life but also do something
47:34
every day to make sure you're you're you're enjoying
47:37
your time here and count them all as blessings because
47:41
we never know you know the next time I go in for a scan
47:44
something could be wrong
47:46
but fortunately so far it hasn't been for cancer so
47:49
and I could get another cancer
47:51
and if I do I'll deal with it
47:54
the uh our
47:55
the ocular melanoma group that I run on Facebook we have as our motto
48:00
dwell in possibility which is from Emily Dickinson
48:04
and that's what we all need to do is to dwell in possibility
48:09
yeah
48:10
I love that and Elizabeth if it's okay with you we can link your Facebook group in the show notes
48:15
if anybody would like to join okay sure
48:18
okay so look for that in the show notes
48:20
and to everyone watching
48:21
thank you so much for tuning in and joining us today
48:24
this is a really important topic
48:28
I think a lot of people
48:29
focus so much on ocular melanoma and they don't maybe
48:33
realize that there's people out there with more than one cancer
48:36
so thank you ladies
48:36
for bringing the awareness to us that
48:39
we still need to have mammograms and checks
48:41
of other things skin checks
48:42
just because you got ocular
48:44
melanoma doesn't mean that's all unfortunately
48:46
so thank you for being here today
48:48
and to everyone watching please go to
48:51
ACureInSight.org check out our cure companions
48:54
program that Sharlene mentioned
48:55
where you can be teamed up with a buddy if you're
48:57
interested in being the veteran buddy
48:59
or you're new and you would like to be paired
49:01
with a veteran you can find that at
49:03
ACureInSight.org under cure companions
49:05
and check out the rest of our resources
49:07
we have the podcast and the YouTube videos we have um
49:12
events coming up
49:13
we've got lots of stuff going on Swing
49:15
For Sight that we mentioned is coming up in April
49:18
so you can find all of this at our website
49:21
and until next week
49:23
we're gonna leave you and we hope you all are well and have a wonderful week