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My 15 Years | Navigating the Pitfalls of Cancer Support Communities · The Eye Believe Podcast

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hey everyone welcome back to the Eye Believe podcast
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this is another episode of Melody's 15
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years this is episode 18
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and today we're gonna talk about community pitfalls
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welcome Melody thanks for joining us
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thanks for having me back
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alright so the ocular melanoma community
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is small but mighty is how I would describe them
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it's a small community it's rare cancer
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but they are warriors so
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when you're getting advice from a community
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there's some pitfalls that come with this so
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today's topic is gonna be community
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pitfalls and how to navigate
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them what to look for what to expect if you're new to this community
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what might you run into and how to
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side step those little potholes
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yeah you know everybody in the community
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wants to help let's we're gonna start there
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they wanna be helpful and they really are trying to be helpful
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there aren't a lot of people out there trying to trip us up
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but it happens because
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um
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we all want to think we're right and we know more than we probably do
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um
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and giving um
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when you're in the community and people are talking
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a lot of people are gonna tell you what to do
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and there's some of them that can be kind of bullying
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about it
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if you don't do this and you're not doing the right thing
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if you don't see this doctor
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you're not doing the right thing
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I take take their what they're saying
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like with a grain of sand
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because if you have a doctor
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that you're comfortable with if you have a doctor
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that you like and you feel that they're educated
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and you're very very comfortable
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then stick with them because
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just because someone else loves their doctor
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doesn't mean that that's who you need to go to
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um
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and and I think that's that's a good place to start is
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everybody thinks
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that their doctor is the best and the only
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and the first and I can promise you that they're not um
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we have so many great doctors out there
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and I I think that's why everyone thinks their doctor
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is the best is because so many of them are great and I will tell you
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from doing the What's Up, Doc? series
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every time I do an interview with a doctor
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and they're so wonderful I think oh if I was a patient
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I would pick them and then I do the next
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interview and I say oh
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if I was a patient I would pick them
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like they're all really wonderful people
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so I hear this a lot in the community
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my doctor is only one of three that treats
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ocular melanoma in the whole country
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we have a we have a spreadsheet of about 125 names
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of doctors that treat ocular melanoma of some kind or
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another in the in the United States
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I don't know I don't know but that's what they hear
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I I also know that um
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not everybody needs to go to Philadelphia
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love Philadelphia I've said it and said it and said it
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they can't see every one of us it's impossible
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and and so just because you you know somebody
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who has a great doctor
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but if you have to travel to go see them
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maybe that's not the right doctor
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for you it's the right doctor for them
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but might not be the right doctor for you and so I
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I think we we get a little pushy with our doctors
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you know if
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if I'm in a Facebook group and somebody says
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you know I live in Nashville
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should I go to should I go to Philadelphia absolutely
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not you got Sarah Cannon right there
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you don't know um go see Doctor McKean
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and she's a she's amazing she's wonderful
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she's knowledgeable she works with Philadelphia
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they they they send patients back and forth
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why would you leave so close to home to fly
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but just because a group of people on the the
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uh support group said oh you gotta go to Sato
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no you don't
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you don't and Doctor Sato will say that himself
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no you don't go where it's close to home
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cause we have so many great doctors right now
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yeah and what a lot of people might not realize
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is they're all friends they all talk to each other
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they're this tight knit community and they talk
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about work stuff with you know they they consult
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with each other they will give second opinions
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to each other's patients they're so tight
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that there really I don't think is this huge
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oh these ones are good and these ones are terrible like
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because they all work together so well
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and if you look at research papers
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you'll see common names you know and and
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you know Doctor
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Orloff is working with you know 12 doctors on a paper
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she's not she's not working
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with these people because she doesn't like them
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you know they they're
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they have a common goal they have a common
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interest in in a
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research project and they all work together
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and honestly when I go to the meetings with the doctors
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it's
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it's oh my gosh hi how are you and it you know they're
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they go to dinner they go you know they they really do
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work together both
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in practice and in private life
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absolutely
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and this might be a good idea to talk about COOG
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if for anyone
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who's watching that doesn't know what COOG is
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oh yeah Cooperative Ocular Oncology Group Doctor Harbour
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started that as a way to get doctors to collaborate
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and they've they've
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it used to be ocular oncologist and now they've
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brought in a whole bunch of medical oncologist
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and these doctors work together they all brainstorm
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they work on a project together and they get along and
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they support each other so um
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people that think they have to go to Doctor
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Harbour just because Doctor
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Harbour is you know the genetics guru
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Dr Harbour
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would I would say would love to see you but if he had
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you know a colleague in Miami
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he would say no go to Bascom Palmer it's closer to you
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you know he he's they're that way they're just um
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I I don't they don't want competition like that
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because they're all working together for the common
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goal
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yeah and they're doing these research papers
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together they're sharing information
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they're learning from each other
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so I really think that you know that's an important
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piece is these doctors are not competitive
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they're not trying to outdo each other
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they're trying to
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help each other and get on the same page which is the whole point of
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COOG
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yeah then move the needle you know let's
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let's make a difference let's do their their goal
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honestly and if you were at Eye Believe
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you you probably saw it their goal
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is to advance science to figure this disease out
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that's their goal and they all have a common goal
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their goal is not to be the only the best the first
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there that's not you know Doctor
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Harbour started with genetics
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and he has opened the field and he works with
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many of the other doctors who
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kind of take the research
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from where he's left off you know
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not that he's not involved in it but
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he isn't this is mine I did this
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you know he's not very he's not like that and I think
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that's one of the takeaways we can get as a community
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is we need to follow their model
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we need to work together we need to
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support each other where we are
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because we all can't go to
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three doctors in the United States because those are
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perceived to be the best now there's I'm gonna preface
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that with their centers of excellence
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which is different if you want a center of excellence
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there's only a few of those go to those that's fine
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by all means go if you can if you can handle the travel
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if your insurance will pay for it
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but here's one of the things that I see in the community
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all the time that breaks my heart
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you have somebody especially if they are on
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specific health plans
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if they're on an HMO they cannot
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just go wherever they want they're
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limited to where their health plan says they can go
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and it takes a lot of work to get them to
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their health plan to approve a doctor in another state
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especially if it's out of network in another state so
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when the community is telling everybody
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you've got to go to Sato imagine that patient who
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can't go to Sato
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because Sato doesn't take their insurance Sato's group
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would love to have them but their insurance
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won't approve Sato's group
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now you now because you have pushed Sato Sato Sato
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and now you have patients that can't see them because
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their their insurance won't cover it
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now that patient is
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they feel like they're missing out like
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I'm not getting the best care because I can't go to all these
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this place where all these people recommended
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and it's not fair to that patient that's being referred
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you know you gotta get you you
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we gotta stop that in in my opinion
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we've gotta stop telling
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people where to go and we've gotta start supporting
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them to find some a doctor that is knowledgeable
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in their health plan and close to their home
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that's what the doctors would want us to do
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absolutely and you're obviously
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listening to this podcast so I'm just gonna say
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go to our playlist
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if if you're on YouTube we have playlists
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and look for the What's Up, Doc playlist if you're on
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another platform just look for any episodes
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that start with What's Up, Doc
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those are all
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episodes where we're interviewing doctors
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about themselves about where they work how they work
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some personal um questions what their favorite
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coffee and treat is in case you want to bring them something
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so if you are like and that the reason we started
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that series is because people were asking
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has anyone been to this doctor what's this doctor
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like who knows about this doctor
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and we thought let's let the doctors tell you
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so if you are wondering about a doctor in your area
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go to our website and go to the physician finder
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see who's close to you see who your insurance takes
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and then see if there's a What's Up, Doc
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episode on them I
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I think we've got about maybe 10 right now um
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and we're still going
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so we would love to get all of them
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but if there's a certain doctor that you wanna see
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email me and tell me get this doctor and I'll I'll
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go hound them and I'll find them for you
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I'll make them do it very well very very well
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that and then you know what
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like we were just talking about how great our doctors
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are they have been
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coming to me I mean I send out an email
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saying who would like to do this and they've been coming to me saying
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thank you for asking
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me thank you for letting me do this because they want to
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to do it for the patients so I that's just
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another testament to how great they are
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I just think as a community we need to support our
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all the doctors and we need to support all the patients
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and imagine being in Utah
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and everybody's telling you oh my god you gotta go to Sato
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you gotta go to Sato
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Sato's team Sato's team Doctor Orloff Doctor Seedor
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oh my god you gotta go there
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Utah has a wonderful center
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an absolute wonderful center
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a lot of people don't even know it's there but they're
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top notch
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so now you've got this patient
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all worked up I can't I got I can't I gotta go there
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they don't even know what's right in their own backyard
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they they will probably get the same care
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but then let's take this another step further
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if you are going to a doctor that is not
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in a center of excellence
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and you don't know that much about him
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or they don't know that much about ocular melanoma
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you might suggest to that doctor
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to consult with some of these other doctors
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Sato's team will consult with another doctor
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I mean you you see it in
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well if you're in the support groups on Facebook
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a lot of times it'll say you know my doctor
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is working with this doctor
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and we're trying to figure it out
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we have a patient in Florida
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who's seeing a local oncologist'cause she cannot travel
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but Sato is consulting because Sato was her
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her doctor way when she first started
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but we have to remember that
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patients have circumstances
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some people cannot travel
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they're not well enough they've got family situations
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so that's not the answer so
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I I know we're all trying to help
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we're trying to be helpful and supportive
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but I think we're not listening
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to the needs of the person asking the question
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we're so quick to give advice
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that sometimes isn't the best advice
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that makes a lot of sense so um
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so
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let's talk about what to do when you get that unwanted
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information when you're the patient and someone's
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telling you what you should do a treatment you should have because it worked
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for them or a doctor that they like or something
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you know that they're kind of pushing on you what can you do to
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get out of that or or deal with it
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um well my favorite thing is called smile and nod
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I will say that is the best way to to handle
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things in my approach
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no matter what it is because when you just kind of agree and say oh OK I'll look into that
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they stop because they think they've convinced you
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when you argue and say
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well no because then they're gonna just try to convince
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you and push and push
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and depending how strong willed they are possibly
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get into a fight
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but if you just agree and say yeah I'll check that out
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you can kind of get out of it that way yep
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amazing recommendation
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love that thank you so much and they are trying to help
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even if they're being a little belligerent
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which sometimes can happen it's
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coming from a good place cause they are trying to help
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but you know
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when you look at ocular melanoma in a whole
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what and I'm gonna use Ashley McCrary as an example
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she is probably one of the only people I know
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that has lived with metastatic disease
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this long and had that many treatments that's the part
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she's
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there's other people that have lived a long time with metastatic
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disease but she's had so many treatments
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so then people follow her treatment schedule
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it doesn't work for them and then they get upset
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but you went to Sato and I went to Sato and
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nothing worked I still progressed and
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how come and that's not fair and why me we have to
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remember that we're all individuals
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and we all react differently to metastatic treatment
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we all act
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react differently even to the eye treatment some of us
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like myself
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yeah I lost vision in my eye but my eye is healthy
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I do not have retinopathy I do not have to get shots
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okay if somebody
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said what was your experience with plaque
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and where you are right now
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they would be very disappointed if they had the same plaque
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and ended up having more complications
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and having to get shots
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they would come back to me and say
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you told me this was easy
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and it's not I have to have shots
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and you said you never had a shot
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well that's my journey but we're all unique
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individuals and we all react differently it depends on
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you know where your plaque
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was placed did you have proton
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beam or did you have plaque did you have Gamma Knife
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you know I know people in the community
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have said oh I'm having Gamma Knife
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oh no you can't have Gamma Knife
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you have to have plaque
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well her doctor thinks Gamma Knife is better
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and in the community we are not doctors
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we should not be giving medical advice
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um we we need to refrain from that and
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they've worked it out with their doctor
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that they think Gamma Knife will work for them
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wish them well
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you know on the on the advice giver side
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if you are in that situation
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like Megan said just thank them and don't get yourself
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all worked up because there's many different treatments
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for many different situations
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we and every one of us is unique
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so what works for one does not work for all
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that is very true and then
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another point that we wanted to make is that sometimes
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we don't hear exactly right what the doctor
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tells us we might
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walk away with our version of what they said
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and I mean I think how many people have read an email
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thought they knew what it said and then went back and reread it and realized it's not what it said
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I have
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I've done it quite a few times yes so it can definitely
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happen especially when you're in a traumatic situation
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you're getting maybe not good news
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or not news you wanted
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um you know we we recommend recording
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your session your not session
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recording your appointment if you can so that you
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you have a transcript of it and that's one of the reasons
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is because it's really easy to hear something
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wrong or think they said something they didn't say
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second guess yourself so that's just
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another point is sometimes
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when people say but my doctor said this
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did they really we're not really sure
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did your doctor your did your doctor
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really say he's only one of three people in the whole United States
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that treats uveal
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melanoma when we know better than that
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that's probably not what you said he said he probably
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I don't know what they would have said but
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they could have said I'm one of three that that
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was licensed at this time or I'm one of three that does this
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you know because a lot of people do things differently
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you've got Doctor McCannel started putting
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a an oil in um the vitreous fluid
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to help with radiation damage
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and other doctors weren't doing that
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and so then there became this big
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controversy well I didn't get oil how come you got oil
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does oil even work it was a trial
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they didn't know at that time
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you know well you're getting
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drops do I need I see that all the time
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how come I'm not getting drops or shots or whatever
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cause you don't need them you know talk to your doctor
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don't use the community
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for medical advice
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that's the biggest pitfall right there
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the community is there to
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support you you can get information
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but when you are relying
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on the community to give you medical advice
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there's where you're going wrong right there because that is not what it's for
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and we shouldn't be giving it
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yeah and like you said everybody's different so
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whatever is going on in your eye that's warranting
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drops isn't happening to somebody else or you know
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whatever the situation
18:27
may be everybody's different everybody's doctor
18:30
has a different approach
18:30
it might be that you could have gotten this
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you know X Y Z if you had done A B and C
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but you didn't you did this so they
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they went that way and it's a very complex
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thing so to act like we understand any of it
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you know I mean even for us this is our job
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but you know I mean
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took me two years to really
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be able to talk like I felt like I kind of
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knew what was going on and I still
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know nothing that the doctors know so um
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that's such a great point why are we telling patients
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what to do and why are patients
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believing what other patients say
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just because we all have a common
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element you know if you broke your arm and your doctor
19:15
did not need to do surgery but your neighbor
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broke their arm and had to have surgery and plates
19:19
and screws and all that
19:22
would you question
19:23
your doctor how come I didn't get plates and screws
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no you wouldn't you'd be like
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oh I guess I didn't have the same break as you right
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that's very true and you know here's another
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piece of this too if you really don't trust your doctor
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and you really feel like they are doing a disservice
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for your treatment
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get a second opinion and find a doctor
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you do trust because that's
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another thing for advocating for yourself
19:49
you need to have a doctor
19:50
that you trust and have a good relationship with um
19:54
or even if you're
19:55
you know even if you just want a second opinion
19:57
you trust your doctor but you just want a second
19:59
opinion that's always the right answer is to get one
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but it's not gonna come from the Facebook
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group it's gonna come from another doctor
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and most doctors not every doctor but most doctors will
20:11
it will will be fine with you getting a second opinion
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um and they might even give you a list of doctors
20:17
to get a second opinion
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and I know I have been to doctors
20:20
that have said if you want a second opinion let me know
20:23
I can hook you up with this doctor or that doctor
20:26
because honestly
20:28
all doctors want their patients to feel
20:32
comfortable and good
20:34
about what they're going to have done
20:36
no matter what it is they don't want a
20:39
an anxious apprehensive patient
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they they don't they want to do their best to avoid
20:45
that situation as a community we have to be careful
20:48
because there's so many passionate people
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and I'm not gonna say that they're doing anything
20:54
wrong so please please please understand
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the people are not doing anything
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wrong they're just overly passionate
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and they can come off a little aggressive
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so if you find yourself
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in that situation where people are a little aggressive
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maybe feel a little bullied
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just understand it comes from a place of
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passion from them they're passionate
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about this and they honestly feel they're right
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but it might not be right for you so it's okay
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to let them have their passion speech
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and then you go do whatever you want to do
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and this is really hard for those that have a little bit more of a
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subdued personality
21:36
we wanna please everybody
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don't do that please please please yourself
21:41
make sure it's right for you um
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I've gone to other doctors
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that I did not like based on a recommendation and went back to my doctor
21:50
um because
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it they didn't fit me and you have to
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I think you have to do that so be careful in the community that
21:58
you're not a being a follower you know think
22:01
think for yourself
22:03
find the doctor that suits you
22:05
find the treatment that suits you and go for
22:07
go that way
22:11
yes I think that's so important with so many aspects
22:14
of life not just your treatment but just
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I mean I feel like you can apply that to everything
22:24
me I'm a follower if somebody
22:26
says oh we gotta do this I'm like OK I'll go and
22:29
and it took me many
22:31
many many years to be like wait a minute
22:33
I don't wanna go do that rock climbing sounds
22:35
really fun but I don't think it's for me you guys all have a great time
22:39
it can be the greatest
22:40
next thing that's happening but I don't want to do it
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um you know there's there's we have to start
22:48
taking care of our own self
22:49
and making sure that we're making decisions
22:51
that are right for ourselves
22:53
and if you're in a community and people are trying to make decisions
22:56
for you
22:57
it's okay to take a break back out take a break
23:00
um don't
23:02
don't feel like you have to never go back into that community
23:05
but it's okay you know
23:07
it and this is mostly for Facebook because that's where
23:10
a lot of this happens
23:11
you can turn off comments to your post
23:14
you can talk to the moderator and ask them to intervene
23:18
um if you are an ocular melanoma support with Elizabeth
23:22
she will usually intervene before you ask her to
23:25
but other groups are not like that
23:28
but you can always ask the moderator
23:30
and if you have are in a group where the moderator is being overly aggressive
23:33
maybe that's not the right group for you
23:35
and it's okay to leave groups
23:37
you don't have to be in every single group
23:39
that's one thing I Learned in the very beginning when I
23:41
when I started this
23:43
I needed to be in every Facebook group because I needed to know what everybody
23:46
was doing and I couldn't miss a thing
23:49
and I'm gonna tell you what I got
23:51
I got a whole lot of drama a whole lot of confusion
23:55
and and it caused
23:58
some really bad relationships
24:01
so you do not need to be in every group
24:03
find one that fits you
24:04
stay in that group and just hang and
24:07
and you don't need to be in all of them because I promise you
24:09
you won't miss anything
24:10
because so many people post the exact same question in five groups
24:15
yeah definitely I mean I'm I'm not in those groups
24:19
but um I am in Elizabeth's but um
24:22
I'm in other groups for other topics
24:23
where it it is that they will blast
24:26
the question in five different groups is the same person
24:29
same question just paste paste paste
24:32
and you're like oh brother
24:35
sort all that information
24:37
that's one thing I never understood why are you posting
24:39
this in five groups how do you sort that information
24:42
how I mean I I trust when I need advice
24:45
I go to like two or three people that I trust
24:48
to putting it out to a group of 2,000 people
24:51
and then having to sort through all of that ooh
24:54
that would make my head spin
24:56
be careful of that be careful where you ask questions
24:59
because you're gonna get stuff you didn't ask for
25:03
that is also very true alright so as far as community
25:08
pitfalls
25:08
are there any other ones that you wanna discuss today
25:12
I think those are kind of the big ones
25:14
be careful where you put your effort
25:17
you know be careful what you give your time to
25:19
and and going back we can we've said this
25:22
kind of throughout this whole series
25:23
take care of yourself
25:26
don't let ocular melanoma rule your life
25:30
jump in jump out go to the groups
25:32
when you need to you don't need to police
25:34
them you don't need to be there for everybody
25:37
please don't be that person
25:38
either because you can't be everything to everybody
25:41
um so the these are the problems
25:43
in this community is that we all want to help each other
25:45
so badly that
25:47
we have to be careful we're not giving
25:49
unsolicited advice
25:51
we gotta be careful that we're not taking
25:52
unsolicited advice
25:54
we have to make sure that we're giving
25:56
proper time to ocular melanoma
26:00
because
26:00
you don't want to give too much but you also don't want to put your head in the sand
26:03
so you got to kind of strike a balance
26:05
and maybe that's the gist of this whole thing is find your balance
26:09
because the community can swallow you up
26:12
and and as much as I love our community
26:15
and the people that are so passionate you can be you
26:19
you it can be unhealthy for some people not all people
26:21
but it can be unhealthy for some people
26:24
but I will say on a positive note
26:27
that I have some of the best friends in this community
26:30
I mean truly truly great friends and we talk
26:34
we might not talk every day
26:35
but when we do or when we see each other
26:38
it's like we just pick right up and you couldn't
26:40
ask for a better group in this community as long as
26:44
you police yourself
26:46
and you know you don't have to be everybody's friend
26:48
you don't take everybody's advice
26:52
yes very wise words and I I think just to
26:57
touch on the balance piece that you said I think
27:00
again with every aspect of your life finding balance is
27:03
not always easy but it is
27:05
so so needed we always need to balance everything
27:09
um when we get out of balance
27:10
that's when we get stressed when we get depressed when
27:13
anything that's like kind of bad in your life
27:16
try try looking at what's out of balance
27:18
because you'll probably find something and if you can get that back into balance
27:22
bring that harmony back in
27:25
you might be able to
27:28
fix a little bit of those
27:29
those things that aren't going the way you want them to
27:31
it also creates confusion you know and
27:35
and so yeah you know it's okay when your friend says
27:39
I had a friend
27:40
who had breast cancer and they had chemotherapy
27:42
you should go to their doctor and get chemotherapy
27:46
no cause that does not work for this cancer but
27:49
please understand
27:51
smile and nod thank you so much smile and nod
27:54
you're not gonna change their mind you're not gonna convince
27:57
them they're gonna just keep on trying to get you to go
28:00
to your their friend's breast cancer doctor
28:03
for your eye cancer
28:04
that you do not have breast cancer in so
28:08
a lot of it is we have to sort
28:10
ourselves out and even though people are
28:12
are they mean well
28:14
the advice is not always the best
28:18
definitely
28:20
alright everyone I hope you all have a wonderful week
28:24
go to our website ACureInSight.org
28:27
check out the physician finder find a great doctor
28:29
near you check out the other resources we have join
28:34
our Tuesday Night Zoom group seven PM
28:36
Eastern it's every Tuesday run by patient volunteers
28:40
if you wanna connect and ask questions
28:42
not medical advice but just
28:44
live living with the disease type questions
28:46
personal questions um
28:50
come to the zoom
28:51
it's a great place to meet people and um
28:54
there's usually two rooms
28:55
one regular and one metastatic
28:57
so you don't have to do anything
28:58
that's not in your comfort level um
29:01
and uh we also have our cure companions
29:03
program you could join
29:04
it teams up a veteran omie and a newbie um
29:08
so just gives you a buddy that you can ask questions
29:10
if you have been in the community for a while and you'd like to volunteer to be that veteran
29:14
then you can also volunteer for that
29:17
um so there's lots of ways to make connections
29:19
and meet people in a positive balanced loving way
29:25
so
29:26
go ahead if you wanna find the zoom group link I
29:29
mean it is on social media but it is also on the homepage of our website
29:34
bottom left hand corner
29:35
you can just log into the website hit the bottom left
29:38
corner
29:39
link and it'll take you right into the zoom group
29:41
we'd love to have I'll also add it to the show notes
29:45
um so yeah check check out
29:49
our website oh also our app we have an app now um I
29:53
you can find it anywhere you download your app A Cure
29:56
In Sight app and there are some
29:59
places you can talk with other patients
30:00
on their different message room or chat rooms
30:04
different chat rooms for different topics
30:06
um the more people we get on there that start talking
30:09
the more it can become a place that everyone goes
30:12
we're just it's still new so it's still a little quiet
30:15
so um
30:16
please download it please pop on and please send it to any
30:20
friends in the community you have that you think would
30:22
enjoy it and let's see if we can get everybody
30:24
on the app talking and really get the app going
30:27
get some momentum behind it that would be wonderful
30:30
and um we will see you all next time