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Kinda Confused

Forums General Melanoma Community Kinda Confused

  • Post
    WendyD.
    Participant

      I have to admit once I was diagnosed with melanoma I did what most of us did. I Googled everything I could on melanoma. I wanted to know what I was facing. Well, during all of the research I got confused on something. How can doctors/pathologists stage someone a stage T1a melanoma when there usually isn't a SNB done for thin lesions? How would anyone truly know that someone is a T1a without knowing if the melanoma has spread to nearby lympnodes? Another thing I would like to know is what are the chances of a thin lesion spreading that had no mitosis and no ucleration and was less than 1mm thick? If someone has links to web pages stating percentages of chance of spread I would definitely like to see it. It seems everything I have read so far says it can only truly be a T1a if it hasn't spread, which goes back to how do we truly know if the SNB was never done? Ok sorry for all the questions, but I really want to know this stuff.

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    • Replies
        Janner
        Participant

          The SNB has been around for almost 20 years now and they've had time to figure out who benefits from having it done and for whom it has no clinical benefit.  You are in the latter category.  I don't have any current stats, but stage 1a (used much more often than the T1aN0M0 designation you use) has a survival rate in the high 95+%.  It used to be stage IA encompassed those who had mitosis.  I was diagnosed in 1992 with a stage IA lesion (.58mm/1 mitosis) and that is now considered stage IB.  Stage IA is a more exclusive group, now, with a higher survival rate than previously seen.  Stage 1A designation changed in late 2010 so any stats prior to that don't reflect stage IA as you know it with zero mitosis.   You could have had the SNB done with a negative result – likelihood probably close to 100%.  So you would have had an unnecessary surgery.

          You crave certainty, but you can't have that.  Even having a negative SNB does not guarantee someone won't have future spread.  It is an indication at this point in time only.  For most institutions, their cutoff is 1mm for the SNB as being clinically applicable.  Some used to use .76mm.  Either way, you are well beneath that number.   You have an extremely good prognosis and that's what you have to go with.  Dwelling on the very small possibility that something will recur in your case is pointless.  I've had 2 lesions deeper than yours (both stage IB in today's staging) and neither had the SNB.  I'm 11 years out from the deepest.  My .88mm lesion would have been borderline at some institutions for the SNB, but I've never regretted not having it.  I'm still here, still stage IB.  I've learned to live with uncertainty, I guess, and that's what every cancer patient gets to learn how to do.

          Best wishes,

          Janner

            WendyD.
            Participant

              Over time I'm sure I will be able to cope with uncertainty more. Honsetly even if we have never been diagnosed with melanoma our length I life still isn't guaranteed. We could die of anything else. lol Thanks for being positive and answering my hundreds of questions Janner. I know through this ordeal you have had to learn patience. To be able to deal with all of us melanoma nut cases. lol

              WendyD.
              Participant

                Over time I'm sure I will be able to cope with uncertainty more. Honsetly even if we have never been diagnosed with melanoma our length I life still isn't guaranteed. We could die of anything else. lol Thanks for being positive and answering my hundreds of questions Janner. I know through this ordeal you have had to learn patience. To be able to deal with all of us melanoma nut cases. lol

                WendyD.
                Participant

                  Over time I'm sure I will be able to cope with uncertainty more. Honsetly even if we have never been diagnosed with melanoma our length I life still isn't guaranteed. We could die of anything else. lol Thanks for being positive and answering my hundreds of questions Janner. I know through this ordeal you have had to learn patience. To be able to deal with all of us melanoma nut cases. lol

                  BrianP
                  Participant

                    Thanks for that thoughtful reply Janner. I still have a lot of regret and even anger at my care providers for not offering me the SNB option back in 2006 when I had a .91mm depth melanoma. I try not to dwell on it and who knows if it would have made a difference or not but your answer helps with that regret.

                    Wendy, the biggest regret I have now was how naive I was about melanoma back when I had my .91mm lesion.  The fact you are here seeking information means you are light years ahead of where I was.  The big balancing act is to be educated and cautious yet not dwell on the negative. 

                    Brian

                    WendyD.
                    Participant

                      Brian, once I suspected I may have melanoma I wanted to know what I was dealing with from get go. I'm just that kind of person. More or less a hypercondriac LOL. I understand your anger as well. I have experienced alot during this past month. I really have had to dictate my whole health care. Once one doctor found out I had melanoma he didn't want to deal with me any more, and then the specialists they referred me to didn't get back with me ( even though I had more lesions needing to be removed and a WLE that was needing to be done), and then when I found another doctor to do the other lesions and WLE he didn't want to excise a lesion that came back abnormal on a biopsy. So here I am again having to find another doctor who will do that. And the Derm I was referred to is apparently on a loooonnnng holiday vacation. LOL But with God's grace I am here and still sane. And I thank God this site is here and I have people like you and Janner to help me through this. We are all in the same boat, so let's row this thing together!! ๐Ÿ™‚

                      JC
                      Participant

                        There is a Queensland study that showed 96% survival at 20 years for early thin lesions, you can google the study.

                        JC
                        Participant

                          There is a Queensland study that showed 96% survival at 20 years for early thin lesions, you can google the study.

                          JC
                          Participant

                            There is a Queensland study that showed 96% survival at 20 years for early thin lesions, you can google the study.

                            WendyD.
                            Participant

                              Brian, once I suspected I may have melanoma I wanted to know what I was dealing with from get go. I'm just that kind of person. More or less a hypercondriac LOL. I understand your anger as well. I have experienced alot during this past month. I really have had to dictate my whole health care. Once one doctor found out I had melanoma he didn't want to deal with me any more, and then the specialists they referred me to didn't get back with me ( even though I had more lesions needing to be removed and a WLE that was needing to be done), and then when I found another doctor to do the other lesions and WLE he didn't want to excise a lesion that came back abnormal on a biopsy. So here I am again having to find another doctor who will do that. And the Derm I was referred to is apparently on a loooonnnng holiday vacation. LOL But with God's grace I am here and still sane. And I thank God this site is here and I have people like you and Janner to help me through this. We are all in the same boat, so let's row this thing together!! ๐Ÿ™‚

                              WendyD.
                              Participant

                                Brian, once I suspected I may have melanoma I wanted to know what I was dealing with from get go. I'm just that kind of person. More or less a hypercondriac LOL. I understand your anger as well. I have experienced alot during this past month. I really have had to dictate my whole health care. Once one doctor found out I had melanoma he didn't want to deal with me any more, and then the specialists they referred me to didn't get back with me ( even though I had more lesions needing to be removed and a WLE that was needing to be done), and then when I found another doctor to do the other lesions and WLE he didn't want to excise a lesion that came back abnormal on a biopsy. So here I am again having to find another doctor who will do that. And the Derm I was referred to is apparently on a loooonnnng holiday vacation. LOL But with God's grace I am here and still sane. And I thank God this site is here and I have people like you and Janner to help me through this. We are all in the same boat, so let's row this thing together!! ๐Ÿ™‚

                                BrianP
                                Participant

                                  Thanks for that thoughtful reply Janner. I still have a lot of regret and even anger at my care providers for not offering me the SNB option back in 2006 when I had a .91mm depth melanoma. I try not to dwell on it and who knows if it would have made a difference or not but your answer helps with that regret.

                                  Wendy, the biggest regret I have now was how naive I was about melanoma back when I had my .91mm lesion.  The fact you are here seeking information means you are light years ahead of where I was.  The big balancing act is to be educated and cautious yet not dwell on the negative. 

                                  Brian

                                  BrianP
                                  Participant

                                    Thanks for that thoughtful reply Janner. I still have a lot of regret and even anger at my care providers for not offering me the SNB option back in 2006 when I had a .91mm depth melanoma. I try not to dwell on it and who knows if it would have made a difference or not but your answer helps with that regret.

                                    Wendy, the biggest regret I have now was how naive I was about melanoma back when I had my .91mm lesion.  The fact you are here seeking information means you are light years ahead of where I was.  The big balancing act is to be educated and cautious yet not dwell on the negative. 

                                    Brian

                                  Janner
                                  Participant

                                    The SNB has been around for almost 20 years now and they've had time to figure out who benefits from having it done and for whom it has no clinical benefit.  You are in the latter category.  I don't have any current stats, but stage 1a (used much more often than the T1aN0M0 designation you use) has a survival rate in the high 95+%.  It used to be stage IA encompassed those who had mitosis.  I was diagnosed in 1992 with a stage IA lesion (.58mm/1 mitosis) and that is now considered stage IB.  Stage IA is a more exclusive group, now, with a higher survival rate than previously seen.  Stage 1A designation changed in late 2010 so any stats prior to that don't reflect stage IA as you know it with zero mitosis.   You could have had the SNB done with a negative result – likelihood probably close to 100%.  So you would have had an unnecessary surgery.

                                    You crave certainty, but you can't have that.  Even having a negative SNB does not guarantee someone won't have future spread.  It is an indication at this point in time only.  For most institutions, their cutoff is 1mm for the SNB as being clinically applicable.  Some used to use .76mm.  Either way, you are well beneath that number.   You have an extremely good prognosis and that's what you have to go with.  Dwelling on the very small possibility that something will recur in your case is pointless.  I've had 2 lesions deeper than yours (both stage IB in today's staging) and neither had the SNB.  I'm 11 years out from the deepest.  My .88mm lesion would have been borderline at some institutions for the SNB, but I've never regretted not having it.  I'm still here, still stage IB.  I've learned to live with uncertainty, I guess, and that's what every cancer patient gets to learn how to do.

                                    Best wishes,

                                    Janner

                                    Janner
                                    Participant

                                      The SNB has been around for almost 20 years now and they've had time to figure out who benefits from having it done and for whom it has no clinical benefit.  You are in the latter category.  I don't have any current stats, but stage 1a (used much more often than the T1aN0M0 designation you use) has a survival rate in the high 95+%.  It used to be stage IA encompassed those who had mitosis.  I was diagnosed in 1992 with a stage IA lesion (.58mm/1 mitosis) and that is now considered stage IB.  Stage IA is a more exclusive group, now, with a higher survival rate than previously seen.  Stage 1A designation changed in late 2010 so any stats prior to that don't reflect stage IA as you know it with zero mitosis.   You could have had the SNB done with a negative result – likelihood probably close to 100%.  So you would have had an unnecessary surgery.

                                      You crave certainty, but you can't have that.  Even having a negative SNB does not guarantee someone won't have future spread.  It is an indication at this point in time only.  For most institutions, their cutoff is 1mm for the SNB as being clinically applicable.  Some used to use .76mm.  Either way, you are well beneath that number.   You have an extremely good prognosis and that's what you have to go with.  Dwelling on the very small possibility that something will recur in your case is pointless.  I've had 2 lesions deeper than yours (both stage IB in today's staging) and neither had the SNB.  I'm 11 years out from the deepest.  My .88mm lesion would have been borderline at some institutions for the SNB, but I've never regretted not having it.  I'm still here, still stage IB.  I've learned to live with uncertainty, I guess, and that's what every cancer patient gets to learn how to do.

                                      Best wishes,

                                      Janner

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