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?’s on multiple primaries
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?’s on multiple primaries

› Forums › General Melanoma Community › ?’s on multiple primaries

  • Post
    • March 12, 2013 at 11:09 pm
    Bobman
    Participant

      Its been about two years since I first posted about my first primary on my neck. Since Januarary of this year I have had four more located on my back, with depths from .4mm-.7mm. So this makes five in two years. All treated with wle, and I am still a little sore from my last two wle's last week. I have the dysplastic nevi syndrome, and have north of 500 on my body. My derm told me I have tied his patient record for multiple primaries, and the surgeon told me it was a bit unusual.

      Its been about two years since I first posted about my first primary on my neck. Since Januarary of this year I have had four more located on my back, with depths from .4mm-.7mm. So this makes five in two years. All treated with wle, and I am still a little sore from my last two wle's last week. I have the dysplastic nevi syndrome, and have north of 500 on my body. My derm told me I have tied his patient record for multiple primaries, and the surgeon told me it was a bit unusual.

      So, my questions are, how unusual is this to get so many primaries so fast? With the atypical syndrome, is this what I can continue to expect? Am I now getting into a different risk factor for progression? With so many changes happening on my body so fast, I am not sure what to make of it. I did in fact find the last three, as I am being vigilant about watching for changes, but it is a challenge with so many to look at.

      Any suggestions and or advice are much appreciated.

      Also looking forward to chat getting up and running so I can come in and vent a little and talk with some of you i have met on there before.

      Thanks,

      Bob

    Viewing 5 reply threads
    • Replies
        • March 13, 2013 at 12:31 am
        JC
        Participant

          This sounds very unusual, statistically speaking.

           

          But it sounds like you have a heck of a dermatologist with over 500 nevi and all 5 of these were caught early.  How does he/she catch all these with over 500 to look at??

          • March 13, 2013 at 12:31 am
          JC
          Participant

            This sounds very unusual, statistically speaking.

             

            But it sounds like you have a heck of a dermatologist with over 500 nevi and all 5 of these were caught early.  How does he/she catch all these with over 500 to look at??

            • March 13, 2013 at 12:31 am
            JC
            Participant

              This sounds very unusual, statistically speaking.

               

              But it sounds like you have a heck of a dermatologist with over 500 nevi and all 5 of these were caught early.  How does he/she catch all these with over 500 to look at??

              • March 13, 2013 at 2:24 am
              Janner
              Participant

                How unusual?  Certainly in the lower percentages.  Since about <10% have more than one primary and most of those with more than one might have only two, you can see you're getting even lower in the odds. But I've know people with quite a few more than you have so you're not in any record breaking mode yet. Can you expect more?  Maybe.  It might be that now you know, you've caught the worst of the buggers and things will slow down.  A different risk factor for progression?  No.  Each primary is independent.  A study out of Australia showed people with multiple primaries actually had better survival statistics than those with one primary.   I found my three primaries and rely upon my eyes and gut feeling more than any doctor.   Do you use any type of body photography to help monitor things for change?  Truthfully, that's about the best you can do along with your own already proven plan.

                Hopefully, the chat room will be up and running soon and you can vent away with the rest of us!

                Best wishes,

                Janner

                  • March 13, 2013 at 2:53 am
                  Bobman
                  Participant

                    Thanks Janner.

                    I was hoping you would chime in , and I feel loads better with what you said. I am in the progress of  doing some body photography to help monitor things. I have a pretty good  idea now of what to look out for , after dozens of biopsies, and five wle's. The last three I found had changed pretty fast, so I reacted accordingly. Interestingly enough, none of my melanoma's have had the "text book" look to them. But they change enough for my internal sirens to sound off.

                    See you in chat sometime soon I hope!

                    Aloha,

                    Bob

                    • March 13, 2013 at 3:13 am
                    Janner
                    Participant

                      My second and third primary didn't fit any text book description except CHANGE.  That's why I'm always harping that I think it is the most important factor.   My first was classic.  But CHANGE to me seems to encompass all the factors best.

                      Sorry to hear you've had more, but it really sounds like you are on top of everything.

                      yes

                      • March 26, 2013 at 2:03 am
                      CLPrice31
                      Participant

                        I am so thankful one of my Twitter friends directed me to this question. I was diagnosed with stage III in January 2011, and was just diagnosed with an in-situ melanoma last week. I had heard that it was uncommon to have multiple primaries, so this helped answer quite a few of my questions. A big thank you to Janner for your information! (Like you, this primary did not fit any text book description except that it had changed into a scab!)

                        Thank you again!

                        • March 26, 2013 at 2:03 am
                        CLPrice31
                        Participant

                          I am so thankful one of my Twitter friends directed me to this question. I was diagnosed with stage III in January 2011, and was just diagnosed with an in-situ melanoma last week. I had heard that it was uncommon to have multiple primaries, so this helped answer quite a few of my questions. A big thank you to Janner for your information! (Like you, this primary did not fit any text book description except that it had changed into a scab!)

                          Thank you again!

                          • March 26, 2013 at 2:03 am
                          CLPrice31
                          Participant

                            I am so thankful one of my Twitter friends directed me to this question. I was diagnosed with stage III in January 2011, and was just diagnosed with an in-situ melanoma last week. I had heard that it was uncommon to have multiple primaries, so this helped answer quite a few of my questions. A big thank you to Janner for your information! (Like you, this primary did not fit any text book description except that it had changed into a scab!)

                            Thank you again!

                            • March 13, 2013 at 3:13 am
                            Janner
                            Participant

                              My second and third primary didn't fit any text book description except CHANGE.  That's why I'm always harping that I think it is the most important factor.   My first was classic.  But CHANGE to me seems to encompass all the factors best.

                              Sorry to hear you've had more, but it really sounds like you are on top of everything.

                              yes

                              • March 13, 2013 at 3:13 am
                              Janner
                              Participant

                                My second and third primary didn't fit any text book description except CHANGE.  That's why I'm always harping that I think it is the most important factor.   My first was classic.  But CHANGE to me seems to encompass all the factors best.

                                Sorry to hear you've had more, but it really sounds like you are on top of everything.

                                yes

                                • March 13, 2013 at 2:53 am
                                Bobman
                                Participant

                                  Thanks Janner.

                                  I was hoping you would chime in , and I feel loads better with what you said. I am in the progress of  doing some body photography to help monitor things. I have a pretty good  idea now of what to look out for , after dozens of biopsies, and five wle's. The last three I found had changed pretty fast, so I reacted accordingly. Interestingly enough, none of my melanoma's have had the "text book" look to them. But they change enough for my internal sirens to sound off.

                                  See you in chat sometime soon I hope!

                                  Aloha,

                                  Bob

                                  • March 13, 2013 at 2:53 am
                                  Bobman
                                  Participant

                                    Thanks Janner.

                                    I was hoping you would chime in , and I feel loads better with what you said. I am in the progress of  doing some body photography to help monitor things. I have a pretty good  idea now of what to look out for , after dozens of biopsies, and five wle's. The last three I found had changed pretty fast, so I reacted accordingly. Interestingly enough, none of my melanoma's have had the "text book" look to them. But they change enough for my internal sirens to sound off.

                                    See you in chat sometime soon I hope!

                                    Aloha,

                                    Bob

                                  • March 13, 2013 at 2:24 am
                                  Janner
                                  Participant

                                    How unusual?  Certainly in the lower percentages.  Since about <10% have more than one primary and most of those with more than one might have only two, you can see you're getting even lower in the odds. But I've know people with quite a few more than you have so you're not in any record breaking mode yet. Can you expect more?  Maybe.  It might be that now you know, you've caught the worst of the buggers and things will slow down.  A different risk factor for progression?  No.  Each primary is independent.  A study out of Australia showed people with multiple primaries actually had better survival statistics than those with one primary.   I found my three primaries and rely upon my eyes and gut feeling more than any doctor.   Do you use any type of body photography to help monitor things for change?  Truthfully, that's about the best you can do along with your own already proven plan.

                                    Hopefully, the chat room will be up and running soon and you can vent away with the rest of us!

                                    Best wishes,

                                    Janner

                                    • March 13, 2013 at 2:24 am
                                    Janner
                                    Participant

                                      How unusual?  Certainly in the lower percentages.  Since about <10% have more than one primary and most of those with more than one might have only two, you can see you're getting even lower in the odds. But I've know people with quite a few more than you have so you're not in any record breaking mode yet. Can you expect more?  Maybe.  It might be that now you know, you've caught the worst of the buggers and things will slow down.  A different risk factor for progression?  No.  Each primary is independent.  A study out of Australia showed people with multiple primaries actually had better survival statistics than those with one primary.   I found my three primaries and rely upon my eyes and gut feeling more than any doctor.   Do you use any type of body photography to help monitor things for change?  Truthfully, that's about the best you can do along with your own already proven plan.

                                      Hopefully, the chat room will be up and running soon and you can vent away with the rest of us!

                                      Best wishes,

                                      Janner

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