Is there value to finding the primary when you are Stage IV?

› Forums › General Melanoma Community › Is there value to finding the primary when you are Stage IV?

  • Post
    • June 16, 2015 at 2:30 am
    DZnDef
    Participant

      At my initial diagnosis I was already Stage IV.  No obvious primary was found on my skin or in my eyes, nose, throat or genitals.  So my status is "unknown primary".  This does not mean that I don't still have the primary on my body, it just isn't an obvious one.  I have easily over a hundred moles, every which one could be described as "unusual" for another person, but are usual for me.  I suspect the primary may still be there somewhere.

      I could go to the dermatologist and have him just start systematically removing and testing moles, but even if we do find it that way, is there any medical benefit to finding the primary after you are Stage IV?  Is the answer any different if your mets are inoperable?

      Thanks in advance for your input.

      Maggie

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    • Replies
        • June 16, 2015 at 4:02 am
        Janner
        Participant

          Yes and no. First off, organ mets are much more worrisome than skin.  If you are doing a systemic treatment, I'm not sure how well that would affect a skin primary.  But the skin primary could continue to send off cells so I Think it would matter what your disease status was elsewhere.

            • June 16, 2015 at 4:38 am
            DZnDef
            Participant

              Thanks Janner. It's only the skin that we aren't sure if systemic treatment works on, right?  I mean, if I found my primary and it was removed WLE – I guess in theory they might not get clean margins on the depth since mine has already spread.  But I wouldn't need an SNB or CLND, right?  Because I would have to take systemic treatment for my lung mets anyways and if it worked, that would work on lymph nodes the same as the lung, right?  Its just the effect on the skin that is unknown?

              I guess another way to look at is:  Should someone who is Stage IV and is NED due to systemic treatment continue to do skin checks?

              • June 16, 2015 at 2:05 pm
              Janner
              Participant

                I think a WLE could get clean margins and you eliminate the source of the cells.  I know you say you have a lot of moles…have any changed?  Do you have photos?

                Skin checks for stage 4 are relevant only to finding a new primary which only happens about 10% of the time.  Stage 4 in the past had more to worry about than a new primary.  But with new treatments bringing more stage 4 to NED, watching the skin again becomes important.  

                About 10% (different population) have unknown primaries – most are thought to have had regressed primaries.  In theory, it makes sense that systemic therapy could take care of a primary, but since most people no longer have their primary tumor to worry about, it's just not something I've ever seen discussed.

                • June 17, 2015 at 7:54 pm
                DZnDef
                Participant

                  Thanks for your thoughts, Janner.  You give just about the best advice of anyone I've seen.  My doctors don't seem overly concerned about locating a primary given my Stage IV status.  But I keep getting reminders from my dermatologist to come back for checkups.  It seems so beside the point right now.  I appreciate your input.

                  • June 17, 2015 at 7:54 pm
                  DZnDef
                  Participant

                    Thanks for your thoughts, Janner.  You give just about the best advice of anyone I've seen.  My doctors don't seem overly concerned about locating a primary given my Stage IV status.  But I keep getting reminders from my dermatologist to come back for checkups.  It seems so beside the point right now.  I appreciate your input.

                    • June 17, 2015 at 7:54 pm
                    DZnDef
                    Participant

                      Thanks for your thoughts, Janner.  You give just about the best advice of anyone I've seen.  My doctors don't seem overly concerned about locating a primary given my Stage IV status.  But I keep getting reminders from my dermatologist to come back for checkups.  It seems so beside the point right now.  I appreciate your input.

                      • June 16, 2015 at 2:05 pm
                      Janner
                      Participant

                        I think a WLE could get clean margins and you eliminate the source of the cells.  I know you say you have a lot of moles…have any changed?  Do you have photos?

                        Skin checks for stage 4 are relevant only to finding a new primary which only happens about 10% of the time.  Stage 4 in the past had more to worry about than a new primary.  But with new treatments bringing more stage 4 to NED, watching the skin again becomes important.  

                        About 10% (different population) have unknown primaries – most are thought to have had regressed primaries.  In theory, it makes sense that systemic therapy could take care of a primary, but since most people no longer have their primary tumor to worry about, it's just not something I've ever seen discussed.

                        • June 16, 2015 at 2:05 pm
                        Janner
                        Participant

                          I think a WLE could get clean margins and you eliminate the source of the cells.  I know you say you have a lot of moles…have any changed?  Do you have photos?

                          Skin checks for stage 4 are relevant only to finding a new primary which only happens about 10% of the time.  Stage 4 in the past had more to worry about than a new primary.  But with new treatments bringing more stage 4 to NED, watching the skin again becomes important.  

                          About 10% (different population) have unknown primaries – most are thought to have had regressed primaries.  In theory, it makes sense that systemic therapy could take care of a primary, but since most people no longer have their primary tumor to worry about, it's just not something I've ever seen discussed.

                          • June 16, 2015 at 4:38 am
                          DZnDef
                          Participant

                            Thanks Janner. It's only the skin that we aren't sure if systemic treatment works on, right?  I mean, if I found my primary and it was removed WLE – I guess in theory they might not get clean margins on the depth since mine has already spread.  But I wouldn't need an SNB or CLND, right?  Because I would have to take systemic treatment for my lung mets anyways and if it worked, that would work on lymph nodes the same as the lung, right?  Its just the effect on the skin that is unknown?

                            I guess another way to look at is:  Should someone who is Stage IV and is NED due to systemic treatment continue to do skin checks?

                            • June 16, 2015 at 4:38 am
                            DZnDef
                            Participant

                              Thanks Janner. It's only the skin that we aren't sure if systemic treatment works on, right?  I mean, if I found my primary and it was removed WLE – I guess in theory they might not get clean margins on the depth since mine has already spread.  But I wouldn't need an SNB or CLND, right?  Because I would have to take systemic treatment for my lung mets anyways and if it worked, that would work on lymph nodes the same as the lung, right?  Its just the effect on the skin that is unknown?

                              I guess another way to look at is:  Should someone who is Stage IV and is NED due to systemic treatment continue to do skin checks?

                            • June 16, 2015 at 4:02 am
                            Janner
                            Participant

                              Yes and no. First off, organ mets are much more worrisome than skin.  If you are doing a systemic treatment, I'm not sure how well that would affect a skin primary.  But the skin primary could continue to send off cells so I Think it would matter what your disease status was elsewhere.

                              • June 16, 2015 at 4:02 am
                              Janner
                              Participant

                                Yes and no. First off, organ mets are much more worrisome than skin.  If you are doing a systemic treatment, I'm not sure how well that would affect a skin primary.  But the skin primary could continue to send off cells so I Think it would matter what your disease status was elsewhere.

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