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Anyone out there have a late recurrence?
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Anyone out there have a late recurrence?

› Forums › General Melanoma Community › Anyone out there have a late recurrence?

  • Post
    • January 31, 2016 at 6:09 pm
    Machmama
    Participant

      I had a thin stage 1 melanoma removed with wide local excision and negative sentinel node biopsy 9 years ago.  Had a recent brown spot develop right along the margin of my scar- and its melanoma in situ.

      I am 35 now, with three kids under four.  I am having a very hard time coping with the fear of metastatic disease and death.  I have to wait another week to meet with my dermatologist.  Anyone out there have a similar experience?

      I am so confused how my tumor could come back as melanoma in situ, how it took so long to recur locally.  From speaking to the dermatologist on the phone, he thinks it may be a new primary that "just happened to develop along my scar", but I don't know if I can buy that.  He also said that, if it is a second primary, I am now at a 9 times risk for developing another.

      I don't know if they can actually determine pathologically whether it's a recurrence or a new primary, or if they can somehow tell?  Because right now I'm petrified of the implications of a local recurrence (if it is still living in my skin, won't it eventually keep coming back until it metastasizes), and I'm also worried I'm at 9 times risk of another because it might be a new primary.

       

       

       

       

    Viewing 5 reply threads
    • Replies
        • January 31, 2016 at 6:31 pm
        melj
        Participant

          I had a local recurrence at the site of my original primary but it presented as a subcutaneous nodule , no surface pigmentation. However, get it checked out and good luck.

          • January 31, 2016 at 6:31 pm
          melj
          Participant

            I had a local recurrence at the site of my original primary but it presented as a subcutaneous nodule , no surface pigmentation. However, get it checked out and good luck.

            • January 31, 2016 at 6:31 pm
            melj
            Participant

              I had a local recurrence at the site of my original primary but it presented as a subcutaneous nodule , no surface pigmentation. However, get it checked out and good luck.

              • January 31, 2016 at 10:58 pm
              Janner
              Participant

                Typically recurrences happen from the lymph vessels in the dermis upward toward the surface of the skin, and new primaries start in the epidermis (in situ) and move down toward the lymph vessels where they can spread.  With a diagnosis of in situ, did the pathologist mention recurrence?  Because the diagnosis of in situ implies a primary (epidermis only) and would follow what your doc said.  I understand the location is close and I'm sure it is possible for a cell to lie dormant in the epidermis, but it's not a scenario you hear a lot.  About 10% of the melanoma population have more than one primary, but ironically, a study in Australia found they had better survival rates.  So a new primary isn't all bad news (I've had 3 with the first removed 22 years ago and I'm still stage 1b).

                • January 31, 2016 at 10:58 pm
                Janner
                Participant

                  Typically recurrences happen from the lymph vessels in the dermis upward toward the surface of the skin, and new primaries start in the epidermis (in situ) and move down toward the lymph vessels where they can spread.  With a diagnosis of in situ, did the pathologist mention recurrence?  Because the diagnosis of in situ implies a primary (epidermis only) and would follow what your doc said.  I understand the location is close and I'm sure it is possible for a cell to lie dormant in the epidermis, but it's not a scenario you hear a lot.  About 10% of the melanoma population have more than one primary, but ironically, a study in Australia found they had better survival rates.  So a new primary isn't all bad news (I've had 3 with the first removed 22 years ago and I'm still stage 1b).

                    • February 3, 2016 at 1:59 pm
                    Machmama
                    Participant

                      The pathologist called it a "recurrent melanoma in situ".

                      I am in the process of transferring my care to an academic center (the Mayo Clinic) and they will review everything so I should know more.  

                       

                      Thank you for your explanation- it is helping my nerves a lot because I'm so terrified of metastatic disease.

                       

                       

                      • February 3, 2016 at 1:59 pm
                      Machmama
                      Participant

                        The pathologist called it a "recurrent melanoma in situ".

                        I am in the process of transferring my care to an academic center (the Mayo Clinic) and they will review everything so I should know more.  

                         

                        Thank you for your explanation- it is helping my nerves a lot because I'm so terrified of metastatic disease.

                         

                         

                        • February 3, 2016 at 4:34 pm
                        Janner
                        Participant

                          Ok.  So they are thinking it is more like a cell was left behind and restarted to grow in the epidermis.  You definitely want it in the epidermis because that basically means they'd probably just do a bigger WLE.  Glad you're getting a second opinion on things.  Please don't start panicking yet! 

                          • February 3, 2016 at 4:34 pm
                          Janner
                          Participant

                            Ok.  So they are thinking it is more like a cell was left behind and restarted to grow in the epidermis.  You definitely want it in the epidermis because that basically means they'd probably just do a bigger WLE.  Glad you're getting a second opinion on things.  Please don't start panicking yet! 

                            • February 3, 2016 at 4:34 pm
                            Janner
                            Participant

                              Ok.  So they are thinking it is more like a cell was left behind and restarted to grow in the epidermis.  You definitely want it in the epidermis because that basically means they'd probably just do a bigger WLE.  Glad you're getting a second opinion on things.  Please don't start panicking yet! 

                              • February 4, 2016 at 1:47 am
                              AllysonRuth
                              Participant

                                I am being treated at the Mayo Clinic and they are fabulous.  I have been so impressed.  Additionally, I love their comprehensive app.  it has all my actual scans, doctor notes, blood work, etc.   In fact, i was at another local doctor today and I could pull up my actual MRI scan just off my phone.  While their app is neat, the doctors have been so supportive, caring and thorough.  Good choice to get a second opinion.  Good luck.  You are in good hands.

                                Allyson

                                Stage iV, lung mets, brain mets, small intestine mets

                                • February 4, 2016 at 1:47 am
                                AllysonRuth
                                Participant

                                  I am being treated at the Mayo Clinic and they are fabulous.  I have been so impressed.  Additionally, I love their comprehensive app.  it has all my actual scans, doctor notes, blood work, etc.   In fact, i was at another local doctor today and I could pull up my actual MRI scan just off my phone.  While their app is neat, the doctors have been so supportive, caring and thorough.  Good choice to get a second opinion.  Good luck.  You are in good hands.

                                  Allyson

                                  Stage iV, lung mets, brain mets, small intestine mets

                                  • February 4, 2016 at 9:45 pm
                                  Machmama
                                  Participant

                                    Thanks Allyson! 

                                    • February 4, 2016 at 9:45 pm
                                    Machmama
                                    Participant

                                      Thanks Allyson! 

                                      • February 4, 2016 at 9:45 pm
                                      Machmama
                                      Participant

                                        Thanks Allyson! 

                                        • February 4, 2016 at 1:47 am
                                        AllysonRuth
                                        Participant

                                          I am being treated at the Mayo Clinic and they are fabulous.  I have been so impressed.  Additionally, I love their comprehensive app.  it has all my actual scans, doctor notes, blood work, etc.   In fact, i was at another local doctor today and I could pull up my actual MRI scan just off my phone.  While their app is neat, the doctors have been so supportive, caring and thorough.  Good choice to get a second opinion.  Good luck.  You are in good hands.

                                          Allyson

                                          Stage iV, lung mets, brain mets, small intestine mets

                                          • February 3, 2016 at 1:59 pm
                                          Machmama
                                          Participant

                                            The pathologist called it a "recurrent melanoma in situ".

                                            I am in the process of transferring my care to an academic center (the Mayo Clinic) and they will review everything so I should know more.  

                                             

                                            Thank you for your explanation- it is helping my nerves a lot because I'm so terrified of metastatic disease.

                                             

                                             

                                          • January 31, 2016 at 10:58 pm
                                          Janner
                                          Participant

                                            Typically recurrences happen from the lymph vessels in the dermis upward toward the surface of the skin, and new primaries start in the epidermis (in situ) and move down toward the lymph vessels where they can spread.  With a diagnosis of in situ, did the pathologist mention recurrence?  Because the diagnosis of in situ implies a primary (epidermis only) and would follow what your doc said.  I understand the location is close and I'm sure it is possible for a cell to lie dormant in the epidermis, but it's not a scenario you hear a lot.  About 10% of the melanoma population have more than one primary, but ironically, a study in Australia found they had better survival rates.  So a new primary isn't all bad news (I've had 3 with the first removed 22 years ago and I'm still stage 1b).

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