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Not everyone can just demand an SLNB

Forums General Melanoma Community Not everyone can just demand an SLNB

  • Post
    becky15
    Participant
      Regarding recent comments on this forum, it is all very well for those with the benefit of insurance in the US to imply that an SLNB is a no brainer with thin melanomas, be your own advocate etc etc. Many readers of this forum will be from Europe where, as is mostly the case and definitely is where I am in the UK, consultants will follow nationally set guidelines. As medical treatment is free to all in most European countries, there is a limit to funding and patients cannot just demand procedures just because they might want them. The guidelines in the UK are backed on the AJCC 2010 guidelines and these di not call for an SLNB under a depth of 1mm so it would be highly unlikely that you would get one.
    Viewing 8 reply threads
    • Replies
        Bubbles
        Participant

          Hi Becky,

          It is pretty clear that your beef is with me and my recent post, so here's my response.

          1. You are correct that what is considered appropriate protocol varies from country. 

          2. Not everyone has the personality or desire to 'demand', and that is okay.

          3. 'Demanding' does not always equal getting in any country! However, if we do not demand what we think is right for our healthcare, freedom, racial equality…whatever…how will we EVER attain it?

          4. Many folks in the UK do 'demand' what they feel is more appropriate melanoma care. Lori Murdoch is one. She is my hero. I am certain her work was instrumental in getting the ipi/nivo combo approved there. If you don't know her story here it is (with links to additional posts about her within):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/ipiinivo-combo-approved-for-advanced.html

          5. You are a bit mislead about what you end up getting when you have insurance in the United States. First, I pay a lot of money to Blue Cross Blue Shield (just so happens that's the company I have my insurance through) every month. Additionally, they frequently REFUSE to pay for scans and tests and all manner of things my oncologists recommend…not just what I 'demand'. REFUSE to pay for what is standard protocol recommended by world renowned and recognised melanoma specialists. So, yes, I appeal, and I appeal, and I appeal again. I am not alone. That is the process endured by many US citizens on this forum and what many of my own patients go through. Sometimes we win, sometimes we don't.  Here is a post of my most recent 'demand' for my care…a follow-up MRI of my brain…seems simple enough as a Stage IV melanmoma patient post 2 brain mets…but nooooooo:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/and-then-theres-me.html

          6. If you don't want to read the doo doo about me (and I don't blame you!)…skip to the bottom and read the excerpt from another melanoma warrior's words. An amazing piece, written by an amazing woman….the real Queen of Melanoma, Reverand Carol Taylor…who has spent YEARS advocating for scanning and testing for those she refers to as her Stage 1 and 2 melahomies…here in the US.

          7. So, melanoma is not easy. No matter where you live. And that sucks. But until we follow in the footsteps of Lori Murdoch and Rev Taylor, until we take the latest data and put it in front of as many people as it takes to make things better, we will merely have our fates decided by red tape, insurance ceo's, and other pencil pushers…even some well meaning ones.

          8. Finally, I state my opinion. I tell folks, when they ask, what I've done and how it came to be. My path and choice is not for everybody. We walk this road on our own. It is a personal decision as to how we comport ourselves and the choices we make along the way. But, I fully intend to leave this world a little better than I found it. And if 'demanding' can make that road easier for my future ratties and Carol's melahomies….then that is what I will do.

          I wish you well. Celeste

          Bubbles
          Participant

            Hi Becky,

            It is pretty clear that your beef is with me and my recent post, so here's my response.

            1. You are correct that what is considered appropriate protocol varies from country. 

            2. Not everyone has the personality or desire to 'demand', and that is okay.

            3. 'Demanding' does not always equal getting in any country! However, if we do not demand what we think is right for our healthcare, freedom, racial equality…whatever…how will we EVER attain it?

            4. Many folks in the UK do 'demand' what they feel is more appropriate melanoma care. Lori Murdoch is one. She is my hero. I am certain her work was instrumental in getting the ipi/nivo combo approved there. If you don't know her story here it is (with links to additional posts about her within):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/ipiinivo-combo-approved-for-advanced.html

            5. You are a bit mislead about what you end up getting when you have insurance in the United States. First, I pay a lot of money to Blue Cross Blue Shield (just so happens that's the company I have my insurance through) every month. Additionally, they frequently REFUSE to pay for scans and tests and all manner of things my oncologists recommend…not just what I 'demand'. REFUSE to pay for what is standard protocol recommended by world renowned and recognised melanoma specialists. So, yes, I appeal, and I appeal, and I appeal again. I am not alone. That is the process endured by many US citizens on this forum and what many of my own patients go through. Sometimes we win, sometimes we don't.  Here is a post of my most recent 'demand' for my care…a follow-up MRI of my brain…seems simple enough as a Stage IV melanmoma patient post 2 brain mets…but nooooooo:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/and-then-theres-me.html

            6. If you don't want to read the doo doo about me (and I don't blame you!)…skip to the bottom and read the excerpt from another melanoma warrior's words. An amazing piece, written by an amazing woman….the real Queen of Melanoma, Reverand Carol Taylor…who has spent YEARS advocating for scanning and testing for those she refers to as her Stage 1 and 2 melahomies…here in the US.

            7. So, melanoma is not easy. No matter where you live. And that sucks. But until we follow in the footsteps of Lori Murdoch and Rev Taylor, until we take the latest data and put it in front of as many people as it takes to make things better, we will merely have our fates decided by red tape, insurance ceo's, and other pencil pushers…even some well meaning ones.

            8. Finally, I state my opinion. I tell folks, when they ask, what I've done and how it came to be. My path and choice is not for everybody. We walk this road on our own. It is a personal decision as to how we comport ourselves and the choices we make along the way. But, I fully intend to leave this world a little better than I found it. And if 'demanding' can make that road easier for my future ratties and Carol's melahomies….then that is what I will do.

            I wish you well. Celeste

              Kim K
              Participant

                What a nice reply.  Usually this is the point people flame each other and it gets real snarky around here.  You state your points elloquently and remain professional and back up your statments / opinions with fact or at the very least your thought processess.  We can all respectfully agree to disagree.  There isn't one system that is better than another but rather all have strengths and weaknesses than need to be navigated.  Thanks again for your insightful words.

                I get both of your points.  In the end I choose to be my own advocate which is why I keep coming here for "just in case".

                I was turned down for further scans by my insurance company saying a year ago everything was clean.  I bet if I pushed I could have gotten them to approve.  They just started using another screening service on the mainland which typically denies first, fight later.  Not surprised, just disappointed.

                 

                Kim K
                Participant

                  What a nice reply.  Usually this is the point people flame each other and it gets real snarky around here.  You state your points elloquently and remain professional and back up your statments / opinions with fact or at the very least your thought processess.  We can all respectfully agree to disagree.  There isn't one system that is better than another but rather all have strengths and weaknesses than need to be navigated.  Thanks again for your insightful words.

                  I get both of your points.  In the end I choose to be my own advocate which is why I keep coming here for "just in case".

                  I was turned down for further scans by my insurance company saying a year ago everything was clean.  I bet if I pushed I could have gotten them to approve.  They just started using another screening service on the mainland which typically denies first, fight later.  Not surprised, just disappointed.

                   

                  Kim K
                  Participant

                    What a nice reply.  Usually this is the point people flame each other and it gets real snarky around here.  You state your points elloquently and remain professional and back up your statments / opinions with fact or at the very least your thought processess.  We can all respectfully agree to disagree.  There isn't one system that is better than another but rather all have strengths and weaknesses than need to be navigated.  Thanks again for your insightful words.

                    I get both of your points.  In the end I choose to be my own advocate which is why I keep coming here for "just in case".

                    I was turned down for further scans by my insurance company saying a year ago everything was clean.  I bet if I pushed I could have gotten them to approve.  They just started using another screening service on the mainland which typically denies first, fight later.  Not surprised, just disappointed.

                     

                  Bubbles
                  Participant

                    Hi Becky,

                    It is pretty clear that your beef is with me and my recent post, so here's my response.

                    1. You are correct that what is considered appropriate protocol varies from country. 

                    2. Not everyone has the personality or desire to 'demand', and that is okay.

                    3. 'Demanding' does not always equal getting in any country! However, if we do not demand what we think is right for our healthcare, freedom, racial equality…whatever…how will we EVER attain it?

                    4. Many folks in the UK do 'demand' what they feel is more appropriate melanoma care. Lori Murdoch is one. She is my hero. I am certain her work was instrumental in getting the ipi/nivo combo approved there. If you don't know her story here it is (with links to additional posts about her within):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/ipiinivo-combo-approved-for-advanced.html

                    5. You are a bit mislead about what you end up getting when you have insurance in the United States. First, I pay a lot of money to Blue Cross Blue Shield (just so happens that's the company I have my insurance through) every month. Additionally, they frequently REFUSE to pay for scans and tests and all manner of things my oncologists recommend…not just what I 'demand'. REFUSE to pay for what is standard protocol recommended by world renowned and recognised melanoma specialists. So, yes, I appeal, and I appeal, and I appeal again. I am not alone. That is the process endured by many US citizens on this forum and what many of my own patients go through. Sometimes we win, sometimes we don't.  Here is a post of my most recent 'demand' for my care…a follow-up MRI of my brain…seems simple enough as a Stage IV melanmoma patient post 2 brain mets…but nooooooo:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/and-then-theres-me.html

                    6. If you don't want to read the doo doo about me (and I don't blame you!)…skip to the bottom and read the excerpt from another melanoma warrior's words. An amazing piece, written by an amazing woman….the real Queen of Melanoma, Reverand Carol Taylor…who has spent YEARS advocating for scanning and testing for those she refers to as her Stage 1 and 2 melahomies…here in the US.

                    7. So, melanoma is not easy. No matter where you live. And that sucks. But until we follow in the footsteps of Lori Murdoch and Rev Taylor, until we take the latest data and put it in front of as many people as it takes to make things better, we will merely have our fates decided by red tape, insurance ceo's, and other pencil pushers…even some well meaning ones.

                    8. Finally, I state my opinion. I tell folks, when they ask, what I've done and how it came to be. My path and choice is not for everybody. We walk this road on our own. It is a personal decision as to how we comport ourselves and the choices we make along the way. But, I fully intend to leave this world a little better than I found it. And if 'demanding' can make that road easier for my future ratties and Carol's melahomies….then that is what I will do.

                    I wish you well. Celeste

                    geriakt
                    Participant

                      That may be the case in Europe or even Canada, but I am in the USA and I demanded a SLNB and I am sure it saved my life. I was under 1MM, Clark level 4, 0 mitosis. My Dr said to me you have nothing to worry about and said he would just cut it out and you should be fine.  I did not meet the guide lines to consider a SLNB but I requested it and it was approved by my insurance and if not I was willing to pay for it out of pocket so you still have a choice to pay for it.

                      Turns out I my SLNB was positive and all of the sudden I am stage IIIA.  I elected for a CLND and moved up to stage IIIB. 

                      Just because you have socialized medicine does not mean you should accept the government making the choice if you live or die. You make that choice and if that means traveling to a different country for surgery, you may have to do so. This is why all the Canadians travel to the Cleveland Clinic to get  proper health care. 

                      Free medicine is great until you need to bet your life on it.

                      Tom

                        ed williams
                        Participant

                          Ouch!!!! That was a little hard on my Canadian pride Tom!!! I don't know if I agree about proper health care, maybe I will let you make the point that you can get faster health care in the states!!! How did Canada get into this conversation anyways? I thought Europe was attacking Celeste (I got your back sweetie!!!).Best Wishes!!!!Ed

                          ed williams
                          Participant

                            Ouch!!!! That was a little hard on my Canadian pride Tom!!! I don't know if I agree about proper health care, maybe I will let you make the point that you can get faster health care in the states!!! How did Canada get into this conversation anyways? I thought Europe was attacking Celeste (I got your back sweetie!!!).Best Wishes!!!!Ed

                            ed williams
                            Participant

                              Ouch!!!! That was a little hard on my Canadian pride Tom!!! I don't know if I agree about proper health care, maybe I will let you make the point that you can get faster health care in the states!!! How did Canada get into this conversation anyways? I thought Europe was attacking Celeste (I got your back sweetie!!!).Best Wishes!!!!Ed

                              geriakt
                              Participant

                                My point I am trying to make is I believe this cancer you need to hit hard hit early, and hit fast. If your current medical insurance is slow to move forward or limits your options, you need to look out of the box. And yes I have talked to many in Canada that takes months to see a dermatologist and then months more to see a melanoma specialist if you can even find one. Once I was diagnosed my dermatologist (2 days after my biopsy). I was in the office of a surgical oncologist the next day. I was operated on in less than a week.  

                                One thing I have learned in life is don't rely on others, but rely on yourself. If the current system you live under does not allow you options, then go out and make your options. People have gotten lazy and just accept what a Government offers you. I am not one to allow any government control my life. In the case of your own health and you want to live, then you have to go out and find your options to get well or solutions you are comfortable with. Nothing in life is handed out on a silver platter.

                                Yes medical insurance is expensive in the USA. It is expensive in Canada in the form of higher taxes to pay for it and longer wait times because of a shortfall of practicing doctors. It sounds just as expensive in Europe if you can't even get treated (what value do you place on your life?). I work for myself and have always purchased health care insurance (not Obama Care). It is the second highest monthly cost I pay below my mortgage. I have found it to be a life saver for me and worth every penny with the super swift and professional care I was given (paid for). Sure we would all like it to be cheaper and more streamlined, but this is what it is now. There are always options in life. You control your destiny with the help of God's good graces. 

                                geriakt
                                Participant

                                  My point I am trying to make is I believe this cancer you need to hit hard hit early, and hit fast. If your current medical insurance is slow to move forward or limits your options, you need to look out of the box. And yes I have talked to many in Canada that takes months to see a dermatologist and then months more to see a melanoma specialist if you can even find one. Once I was diagnosed my dermatologist (2 days after my biopsy). I was in the office of a surgical oncologist the next day. I was operated on in less than a week.  

                                  One thing I have learned in life is don't rely on others, but rely on yourself. If the current system you live under does not allow you options, then go out and make your options. People have gotten lazy and just accept what a Government offers you. I am not one to allow any government control my life. In the case of your own health and you want to live, then you have to go out and find your options to get well or solutions you are comfortable with. Nothing in life is handed out on a silver platter.

                                  Yes medical insurance is expensive in the USA. It is expensive in Canada in the form of higher taxes to pay for it and longer wait times because of a shortfall of practicing doctors. It sounds just as expensive in Europe if you can't even get treated (what value do you place on your life?). I work for myself and have always purchased health care insurance (not Obama Care). It is the second highest monthly cost I pay below my mortgage. I have found it to be a life saver for me and worth every penny with the super swift and professional care I was given (paid for). Sure we would all like it to be cheaper and more streamlined, but this is what it is now. There are always options in life. You control your destiny with the help of God's good graces. 

                                  MoiraM
                                  Participant

                                    One aspect of this forum that frustrates me is people saying 'it worked for me so it is the right way''.

                                    What works for one person does not necessarily work for another.

                                    A lot of vulnerable people read this board. I do not think they need to be told that not getting a teatment is itheir own fault for not pushing hard enough.

                                    MoiraM
                                    Participant

                                      One aspect of this forum that frustrates me is people saying 'it worked for me so it is the right way''.

                                      What works for one person does not necessarily work for another.

                                      A lot of vulnerable people read this board. I do not think they need to be told that not getting a teatment is itheir own fault for not pushing hard enough.

                                      MoiraM
                                      Participant

                                        One aspect of this forum that frustrates me is people saying 'it worked for me so it is the right way''.

                                        What works for one person does not necessarily work for another.

                                        A lot of vulnerable people read this board. I do not think they need to be told that not getting a teatment is itheir own fault for not pushing hard enough.

                                        geriakt
                                        Participant

                                          My point I am trying to make is I believe this cancer you need to hit hard hit early, and hit fast. If your current medical insurance is slow to move forward or limits your options, you need to look out of the box. And yes I have talked to many in Canada that takes months to see a dermatologist and then months more to see a melanoma specialist if you can even find one. Once I was diagnosed my dermatologist (2 days after my biopsy). I was in the office of a surgical oncologist the next day. I was operated on in less than a week.  

                                          One thing I have learned in life is don't rely on others, but rely on yourself. If the current system you live under does not allow you options, then go out and make your options. People have gotten lazy and just accept what a Government offers you. I am not one to allow any government control my life. In the case of your own health and you want to live, then you have to go out and find your options to get well or solutions you are comfortable with. Nothing in life is handed out on a silver platter.

                                          Yes medical insurance is expensive in the USA. It is expensive in Canada in the form of higher taxes to pay for it and longer wait times because of a shortfall of practicing doctors. It sounds just as expensive in Europe if you can't even get treated (what value do you place on your life?). I work for myself and have always purchased health care insurance (not Obama Care). It is the second highest monthly cost I pay below my mortgage. I have found it to be a life saver for me and worth every penny with the super swift and professional care I was given (paid for). Sure we would all like it to be cheaper and more streamlined, but this is what it is now. There are always options in life. You control your destiny with the help of God's good graces. 

                                        geriakt
                                        Participant

                                          That may be the case in Europe or even Canada, but I am in the USA and I demanded a SLNB and I am sure it saved my life. I was under 1MM, Clark level 4, 0 mitosis. My Dr said to me you have nothing to worry about and said he would just cut it out and you should be fine.  I did not meet the guide lines to consider a SLNB but I requested it and it was approved by my insurance and if not I was willing to pay for it out of pocket so you still have a choice to pay for it.

                                          Turns out I my SLNB was positive and all of the sudden I am stage IIIA.  I elected for a CLND and moved up to stage IIIB. 

                                          Just because you have socialized medicine does not mean you should accept the government making the choice if you live or die. You make that choice and if that means traveling to a different country for surgery, you may have to do so. This is why all the Canadians travel to the Cleveland Clinic to get  proper health care. 

                                          Free medicine is great until you need to bet your life on it.

                                          Tom

                                          geriakt
                                          Participant

                                            That may be the case in Europe or even Canada, but I am in the USA and I demanded a SLNB and I am sure it saved my life. I was under 1MM, Clark level 4, 0 mitosis. My Dr said to me you have nothing to worry about and said he would just cut it out and you should be fine.  I did not meet the guide lines to consider a SLNB but I requested it and it was approved by my insurance and if not I was willing to pay for it out of pocket so you still have a choice to pay for it.

                                            Turns out I my SLNB was positive and all of the sudden I am stage IIIA.  I elected for a CLND and moved up to stage IIIB. 

                                            Just because you have socialized medicine does not mean you should accept the government making the choice if you live or die. You make that choice and if that means traveling to a different country for surgery, you may have to do so. This is why all the Canadians travel to the Cleveland Clinic to get  proper health care. 

                                            Free medicine is great until you need to bet your life on it.

                                            Tom

                                            jbronicki
                                            Participant

                                              Hi Becky,

                                              I completely understand the frustration.  I'll chime in to since I made the comments about advocacy.  Unfortunately, the laws of human nature point us to the fact that the patient and their family, by nature, have the most vested interest in the outcomes.  And I've experienced this firsthand.  I think it's incredibly hard to advocate in this system or any system.  It's a true burden at times on the family and patient.  

                                              1. Advocacy – I'll share a story that has to do with my father.  National Public Radio (NPR) here in the US actually interviewed me about this event and did a story on disparate healthcare in the US.  Due to my profession and what I've done in past jobs, I have a decent medical knowledge baseline with a strong grasp of medical terminology and even I couldn't advocate successfully for my father here in the US.  This had nothing to do with insurance but with disparate treatment.  I can't imagine how frustrating this system is for people who haven't been exposed to medical terminology or the complicated infrastructure of our medical system.  Here's a link, there are several pictures of me and my dad.  

                                              http://www.npr.org/sections/health-shots/2012/05/21/153028362/your-stories-of-being-sick-inside-the-u-s-health-care-system

                                               

                                              So basically we sent my father to the hospital for broken ribs and they proceeded to treat him with pain meds (Methadone) that bumped his Parkinson's meds off the receptors and basically sent him into immediate withdrawal from powerful neurological medications.    They sent him into a coma and condition called Neuroleptic Malignant Disorder.  We as his family stood by his bedside telling the nurses to NOT give him more medication (he was comatose, what kind of pain meds did he need????).  Different doctors would come in and give him different medications and different diagnoses.  in the end, we had to demand to see what they call a hospitalist.  No one believed this was a medication issue.  He would have been better off on the couch with Advil then what he went through.  He nearly died from this and probably sped up his decline.  He has since passed away, but I remember sitting by his bedside when he was in the ICU and telling him he could leave us, JUST NOT NOW, DON'T LET THEM WIN!  

                                              2. Insurance and Practice patterns – this is a complicated issue with many variables.  Several years ago I did the logistical coordination for a large international and longitudinal (I think they are now at around 15 years) study researching practice patterns and outcomes in 13 countries at the time.  The research was focused on dialysis and end stage renal patients.  It's called DOPPS and both UK and Canada are in the study.  You can check out their research here and they look at variation across countries.

                                              http://www.dopps.org/PublishedResearch/OurPublications.aspx

                                              The analysts and biostatisticians worked with Principal investigators/nephrologists/economists/researchers from multiple countries.  The UK and Canada both have socialized medicine with large regional centers. Geography is actually a variable in outcomes since many patients have to travel quite a distance to these regional centers.   I think what we are all frustrated with (and this probably includes doctors as well) the fact that insurance can dictate treatment protocols and practices.  This is true in any country.  Obviously insurance is one of the variables they look at and there are multiple other variables (hence multivariate).   Here in the US, they recently changed how they were reimbursing dialysis treatment (called bundling payments) and they are now going to research if this has a big effect on outcomes on how patients are treated.  Insurance coverage varies by country but it doesn't mean we don't all have issues with it to varying degrees. 

                                               

                                              3.  My husband also just recently got denied a 2 year brain MRI even though that is the standard wait and watch protocol for someone with his presentation.  

                                              Wishing all the best.  None of this is easy.

                                              jbronicki
                                              Participant

                                                Hi Becky,

                                                I completely understand the frustration.  I'll chime in to since I made the comments about advocacy.  Unfortunately, the laws of human nature point us to the fact that the patient and their family, by nature, have the most vested interest in the outcomes.  And I've experienced this firsthand.  I think it's incredibly hard to advocate in this system or any system.  It's a true burden at times on the family and patient.  

                                                1. Advocacy – I'll share a story that has to do with my father.  National Public Radio (NPR) here in the US actually interviewed me about this event and did a story on disparate healthcare in the US.  Due to my profession and what I've done in past jobs, I have a decent medical knowledge baseline with a strong grasp of medical terminology and even I couldn't advocate successfully for my father here in the US.  This had nothing to do with insurance but with disparate treatment.  I can't imagine how frustrating this system is for people who haven't been exposed to medical terminology or the complicated infrastructure of our medical system.  Here's a link, there are several pictures of me and my dad.  

                                                http://www.npr.org/sections/health-shots/2012/05/21/153028362/your-stories-of-being-sick-inside-the-u-s-health-care-system

                                                 

                                                So basically we sent my father to the hospital for broken ribs and they proceeded to treat him with pain meds (Methadone) that bumped his Parkinson's meds off the receptors and basically sent him into immediate withdrawal from powerful neurological medications.    They sent him into a coma and condition called Neuroleptic Malignant Disorder.  We as his family stood by his bedside telling the nurses to NOT give him more medication (he was comatose, what kind of pain meds did he need????).  Different doctors would come in and give him different medications and different diagnoses.  in the end, we had to demand to see what they call a hospitalist.  No one believed this was a medication issue.  He would have been better off on the couch with Advil then what he went through.  He nearly died from this and probably sped up his decline.  He has since passed away, but I remember sitting by his bedside when he was in the ICU and telling him he could leave us, JUST NOT NOW, DON'T LET THEM WIN!  

                                                2. Insurance and Practice patterns – this is a complicated issue with many variables.  Several years ago I did the logistical coordination for a large international and longitudinal (I think they are now at around 15 years) study researching practice patterns and outcomes in 13 countries at the time.  The research was focused on dialysis and end stage renal patients.  It's called DOPPS and both UK and Canada are in the study.  You can check out their research here and they look at variation across countries.

                                                http://www.dopps.org/PublishedResearch/OurPublications.aspx

                                                The analysts and biostatisticians worked with Principal investigators/nephrologists/economists/researchers from multiple countries.  The UK and Canada both have socialized medicine with large regional centers. Geography is actually a variable in outcomes since many patients have to travel quite a distance to these regional centers.   I think what we are all frustrated with (and this probably includes doctors as well) the fact that insurance can dictate treatment protocols and practices.  This is true in any country.  Obviously insurance is one of the variables they look at and there are multiple other variables (hence multivariate).   Here in the US, they recently changed how they were reimbursing dialysis treatment (called bundling payments) and they are now going to research if this has a big effect on outcomes on how patients are treated.  Insurance coverage varies by country but it doesn't mean we don't all have issues with it to varying degrees. 

                                                 

                                                3.  My husband also just recently got denied a 2 year brain MRI even though that is the standard wait and watch protocol for someone with his presentation.  

                                                Wishing all the best.  None of this is easy.

                                                  becky15
                                                  Participant

                                                    Many thanks Celeste and Jackie for your detailed replies.  I must apologise for my rather blunt initial posting as I was coming to the end of a train journey and was rushing to post before getting off the train.

                                                     

                                                    I appreciate that we have very different medical systems. I do feel however that it is possible to debate the provision of treatment with an insurance company whereas this is virtually impossible with the NHS who follow strict guidelines which, in the case of melanoma, are governed by the British Association of Dermatologists 2010 guidelines.  Having re-read these, I see that there is provision for an SNLB to be offered to stage 1b patients (although in practice, my consultant told me this is usually restricted to those melanomas over 1mm) there is no such provision for Stage 1a patients.  The guidelines recognise a 5% risk of a positive node with a less than 1mm melanoma but that this is coupled with a 5% chance of morbidity, hence giving an SLNB to a stage 1a patient is presumeably not seen worth the risk.  I actually had my melanoma diagnosed and treated privately, paying for it myself as I do not have private medical insurance, and when I questioned an SLNB with my consultant I was told that no one would perform one outside of the guidelines (I am stage 1a).  Maybe he was incorrect, maybe I should have been more proactive, but I really don't think I would have got anywhere.

                                                     

                                                    To the poster who suggested that a melanoma patient in either the UK or another country with a similar system goes and pays for an SNLB in another country, presumeably such as the US, to put it bluntly this is a ridiculous suggestion as all but the privileged few would be able to afford to do this.

                                                     

                                                    I fully agree that we should all be our own advocates but I think we should also recognise that, particularly in taxation funded medical systems, there is only so much money in the pot.  Guidelines are prepared by the most eminent professionals in their field, and in the case of melanoma, there are a number of world renowned experts in the UK.  The guidelines are based on research, much of which is provided by US studies, and although you can always come up with contrary research, who can be sure that the research relied upon isn't a more accurate version. Nothing is written in stone.

                                                     

                                                    Hopefully I will be one of the 95% of stage 1a patients who didn't have a positive node at diagnosis, but I will never know and it would be wrong for others in my situation to feel that they have somehow failed themselves for not pushing for an SNLB at the time.  

                                                     

                                                    Best wishes to everyone, Becky

                                                     

                                                     

                                                     

                                                     

                                                     

                                                     

                                                     

                                                    becky15
                                                    Participant

                                                      Many thanks Celeste and Jackie for your detailed replies.  I must apologise for my rather blunt initial posting as I was coming to the end of a train journey and was rushing to post before getting off the train.

                                                       

                                                      I appreciate that we have very different medical systems. I do feel however that it is possible to debate the provision of treatment with an insurance company whereas this is virtually impossible with the NHS who follow strict guidelines which, in the case of melanoma, are governed by the British Association of Dermatologists 2010 guidelines.  Having re-read these, I see that there is provision for an SNLB to be offered to stage 1b patients (although in practice, my consultant told me this is usually restricted to those melanomas over 1mm) there is no such provision for Stage 1a patients.  The guidelines recognise a 5% risk of a positive node with a less than 1mm melanoma but that this is coupled with a 5% chance of morbidity, hence giving an SLNB to a stage 1a patient is presumeably not seen worth the risk.  I actually had my melanoma diagnosed and treated privately, paying for it myself as I do not have private medical insurance, and when I questioned an SLNB with my consultant I was told that no one would perform one outside of the guidelines (I am stage 1a).  Maybe he was incorrect, maybe I should have been more proactive, but I really don't think I would have got anywhere.

                                                       

                                                      To the poster who suggested that a melanoma patient in either the UK or another country with a similar system goes and pays for an SNLB in another country, presumeably such as the US, to put it bluntly this is a ridiculous suggestion as all but the privileged few would be able to afford to do this.

                                                       

                                                      I fully agree that we should all be our own advocates but I think we should also recognise that, particularly in taxation funded medical systems, there is only so much money in the pot.  Guidelines are prepared by the most eminent professionals in their field, and in the case of melanoma, there are a number of world renowned experts in the UK.  The guidelines are based on research, much of which is provided by US studies, and although you can always come up with contrary research, who can be sure that the research relied upon isn't a more accurate version. Nothing is written in stone.

                                                       

                                                      Hopefully I will be one of the 95% of stage 1a patients who didn't have a positive node at diagnosis, but I will never know and it would be wrong for others in my situation to feel that they have somehow failed themselves for not pushing for an SNLB at the time.  

                                                       

                                                      Best wishes to everyone, Becky

                                                       

                                                       

                                                       

                                                       

                                                       

                                                       

                                                       

                                                      becky15
                                                      Participant

                                                        Many thanks Celeste and Jackie for your detailed replies.  I must apologise for my rather blunt initial posting as I was coming to the end of a train journey and was rushing to post before getting off the train.

                                                         

                                                        I appreciate that we have very different medical systems. I do feel however that it is possible to debate the provision of treatment with an insurance company whereas this is virtually impossible with the NHS who follow strict guidelines which, in the case of melanoma, are governed by the British Association of Dermatologists 2010 guidelines.  Having re-read these, I see that there is provision for an SNLB to be offered to stage 1b patients (although in practice, my consultant told me this is usually restricted to those melanomas over 1mm) there is no such provision for Stage 1a patients.  The guidelines recognise a 5% risk of a positive node with a less than 1mm melanoma but that this is coupled with a 5% chance of morbidity, hence giving an SLNB to a stage 1a patient is presumeably not seen worth the risk.  I actually had my melanoma diagnosed and treated privately, paying for it myself as I do not have private medical insurance, and when I questioned an SLNB with my consultant I was told that no one would perform one outside of the guidelines (I am stage 1a).  Maybe he was incorrect, maybe I should have been more proactive, but I really don't think I would have got anywhere.

                                                         

                                                        To the poster who suggested that a melanoma patient in either the UK or another country with a similar system goes and pays for an SNLB in another country, presumeably such as the US, to put it bluntly this is a ridiculous suggestion as all but the privileged few would be able to afford to do this.

                                                         

                                                        I fully agree that we should all be our own advocates but I think we should also recognise that, particularly in taxation funded medical systems, there is only so much money in the pot.  Guidelines are prepared by the most eminent professionals in their field, and in the case of melanoma, there are a number of world renowned experts in the UK.  The guidelines are based on research, much of which is provided by US studies, and although you can always come up with contrary research, who can be sure that the research relied upon isn't a more accurate version. Nothing is written in stone.

                                                         

                                                        Hopefully I will be one of the 95% of stage 1a patients who didn't have a positive node at diagnosis, but I will never know and it would be wrong for others in my situation to feel that they have somehow failed themselves for not pushing for an SNLB at the time.  

                                                         

                                                        Best wishes to everyone, Becky

                                                         

                                                         

                                                         

                                                         

                                                         

                                                         

                                                         

                                                        stars
                                                        Participant

                                                          Becky, as someone from a country with universal healthcare, I really back you up on your explanation of this. If something is simply not recommended by clinical guidelines – guidelines usually set up at least in association with the public healthcare system but with buy in from private practitioners – it is not usually possible to order a procedure even if you are willing to pay for it out of pocket.  Further, for SLNB, what difference does it make? It gives prognostic certainty but no extension of life. Only in very recent years might this have changed with the availability of immunotherapires for stage 3 disease (assuming nodes positive but no further spread). Just saying: I get where you are coming from, as someone from a similar country this would be how it would play out here, too. We can't just order procedures that are outside of established clinical guidelines, even if money isn't an object.  However, for most serious diseases, the public system offers as much as or sometimes more than private equivalents. I'd say in the case of melanoma this is true.

                                                          stars
                                                          Participant

                                                            Becky, as someone from a country with universal healthcare, I really back you up on your explanation of this. If something is simply not recommended by clinical guidelines – guidelines usually set up at least in association with the public healthcare system but with buy in from private practitioners – it is not usually possible to order a procedure even if you are willing to pay for it out of pocket.  Further, for SLNB, what difference does it make? It gives prognostic certainty but no extension of life. Only in very recent years might this have changed with the availability of immunotherapires for stage 3 disease (assuming nodes positive but no further spread). Just saying: I get where you are coming from, as someone from a similar country this would be how it would play out here, too. We can't just order procedures that are outside of established clinical guidelines, even if money isn't an object.  However, for most serious diseases, the public system offers as much as or sometimes more than private equivalents. I'd say in the case of melanoma this is true.

                                                            stars
                                                            Participant

                                                              Becky, as someone from a country with universal healthcare, I really back you up on your explanation of this. If something is simply not recommended by clinical guidelines – guidelines usually set up at least in association with the public healthcare system but with buy in from private practitioners – it is not usually possible to order a procedure even if you are willing to pay for it out of pocket.  Further, for SLNB, what difference does it make? It gives prognostic certainty but no extension of life. Only in very recent years might this have changed with the availability of immunotherapires for stage 3 disease (assuming nodes positive but no further spread). Just saying: I get where you are coming from, as someone from a similar country this would be how it would play out here, too. We can't just order procedures that are outside of established clinical guidelines, even if money isn't an object.  However, for most serious diseases, the public system offers as much as or sometimes more than private equivalents. I'd say in the case of melanoma this is true.

                                                              Bubbles
                                                              Participant

                                                                No worries, Becky.  I think the main problem is that melanoma (and insurance…and fighting for your care!!) sucks!!!  No matter where you have to do it.  The odds are that you would not have had a positive node had you had the SNLB done and the odds are that you will never hear from melanoma again.  That is my sincere wish for you!!!  Yours, Celeste

                                                                Bubbles
                                                                Participant

                                                                  No worries, Becky.  I think the main problem is that melanoma (and insurance…and fighting for your care!!) sucks!!!  No matter where you have to do it.  The odds are that you would not have had a positive node had you had the SNLB done and the odds are that you will never hear from melanoma again.  That is my sincere wish for you!!!  Yours, Celeste

                                                                  Bubbles
                                                                  Participant

                                                                    No worries, Becky.  I think the main problem is that melanoma (and insurance…and fighting for your care!!) sucks!!!  No matter where you have to do it.  The odds are that you would not have had a positive node had you had the SNLB done and the odds are that you will never hear from melanoma again.  That is my sincere wish for you!!!  Yours, Celeste

                                                                  jbronicki
                                                                  Participant

                                                                    Hi Becky,

                                                                    I completely understand the frustration.  I'll chime in to since I made the comments about advocacy.  Unfortunately, the laws of human nature point us to the fact that the patient and their family, by nature, have the most vested interest in the outcomes.  And I've experienced this firsthand.  I think it's incredibly hard to advocate in this system or any system.  It's a true burden at times on the family and patient.  

                                                                    1. Advocacy – I'll share a story that has to do with my father.  National Public Radio (NPR) here in the US actually interviewed me about this event and did a story on disparate healthcare in the US.  Due to my profession and what I've done in past jobs, I have a decent medical knowledge baseline with a strong grasp of medical terminology and even I couldn't advocate successfully for my father here in the US.  This had nothing to do with insurance but with disparate treatment.  I can't imagine how frustrating this system is for people who haven't been exposed to medical terminology or the complicated infrastructure of our medical system.  Here's a link, there are several pictures of me and my dad.  

                                                                    http://www.npr.org/sections/health-shots/2012/05/21/153028362/your-stories-of-being-sick-inside-the-u-s-health-care-system

                                                                     

                                                                    So basically we sent my father to the hospital for broken ribs and they proceeded to treat him with pain meds (Methadone) that bumped his Parkinson's meds off the receptors and basically sent him into immediate withdrawal from powerful neurological medications.    They sent him into a coma and condition called Neuroleptic Malignant Disorder.  We as his family stood by his bedside telling the nurses to NOT give him more medication (he was comatose, what kind of pain meds did he need????).  Different doctors would come in and give him different medications and different diagnoses.  in the end, we had to demand to see what they call a hospitalist.  No one believed this was a medication issue.  He would have been better off on the couch with Advil then what he went through.  He nearly died from this and probably sped up his decline.  He has since passed away, but I remember sitting by his bedside when he was in the ICU and telling him he could leave us, JUST NOT NOW, DON'T LET THEM WIN!  

                                                                    2. Insurance and Practice patterns – this is a complicated issue with many variables.  Several years ago I did the logistical coordination for a large international and longitudinal (I think they are now at around 15 years) study researching practice patterns and outcomes in 13 countries at the time.  The research was focused on dialysis and end stage renal patients.  It's called DOPPS and both UK and Canada are in the study.  You can check out their research here and they look at variation across countries.

                                                                    http://www.dopps.org/PublishedResearch/OurPublications.aspx

                                                                    The analysts and biostatisticians worked with Principal investigators/nephrologists/economists/researchers from multiple countries.  The UK and Canada both have socialized medicine with large regional centers. Geography is actually a variable in outcomes since many patients have to travel quite a distance to these regional centers.   I think what we are all frustrated with (and this probably includes doctors as well) the fact that insurance can dictate treatment protocols and practices.  This is true in any country.  Obviously insurance is one of the variables they look at and there are multiple other variables (hence multivariate).   Here in the US, they recently changed how they were reimbursing dialysis treatment (called bundling payments) and they are now going to research if this has a big effect on outcomes on how patients are treated.  Insurance coverage varies by country but it doesn't mean we don't all have issues with it to varying degrees. 

                                                                     

                                                                    3.  My husband also just recently got denied a 2 year brain MRI even though that is the standard wait and watch protocol for someone with his presentation.  

                                                                    Wishing all the best.  None of this is easy.

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