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Primary #3

Forums General Melanoma Community Primary #3

  • Post
    bekahboo82
    Participant

      I am going to try to keep this as brief as possible.  My backstory….Melanoma in situ Right Upper Back diagnosed 9/09….Wide excision comes back clean….6 month skin checks….Lentigo Maligna Melanoma in-situ Left Calf diagnosed 10/12….Wide excision comes back clean….continue 6 month skin checks.  Dermatologist biopsoies at least one lesion every time I go, most of them come back "abnormal' in one way or another so I have wide local excisions on most everything.  I went for my 6 month check last Tuesday and this is the pathology report:

      Skin, shave biopsy, R lateral mid back/post axilla:

       Atypical compound melanocytic proliferation

      Most consistent with predominantly intraepidermal Spitz nevus extending to the lateral margin

      Comment: There are predominantly single epithelioid melanocytes in the epidermis and in the superficial most .2mm of dermis sampled.  The histologic features fit well for a Spitz nevus variant but the challenge remains that the histolgic features in the epidermal component closely mimic melanoma in-situ.  With the positive lateral margin, complete conservative re-excision may be prudent.  Seen in consultation with another dermatopathologist, who concurs.

       

      I am a Registered Nurse in Plastic and Reconstructive Surgery and one of my surgeons has already done the wide excision for me.

       

      My questions are as follows:

      1)  Should I go for genetic testing now that I have had 3 primaries?

      2)  Should I see an oncologist for a surveillance CT/PET scan?

      3)  Should I go for full skin checks every three months instead of every six?

      4)  Is it possible for me to go the rest of my life (I am 33) and never have more than an in-situ lesion if I continue close surveillance?

      I sent these same questions to my Dermatologist and am waiting to hear back.  I am hoping someone else here has had a similar experience and can shed some light on what I should do moving forward.  I am dilligent with checking my own skin and if anything changes, we remove it.  I just want to be sure I am doing absolutely everything possible to catch these things early.  Thank you to any and everyone who may be able to help!

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        Janner
        Participant

          Do you have dysplastic nevus syndrome?  That typically isn't one of the genes they test for but has a higher risk of multiple primaries.  What will testing get you?   I've had 3 and am positive for CDKN2A and….. so what.  I already know I'm high risk for other primaries.  I did my testing as part of a clinical trial so it made sense to 'give back' but I don't see the point otherwise.  It changes nothing in the way I am monitored.

          No onc will give you a PET/CT for stage 0 in situ lesions.  They are still controversial for stage III/IV but you are not there.  Your insurance wouldn't cover it.  People with multiple primaries actually have better overall survival statistics. 

          I go to the derm every 6 months – "6 months for life" as my derm says.  My first primary was 22 years ago, my last was 14 years ago.  I don't have dysplastic nevus syndrome – I don't have enough moles.  But yes, I think it is possible not to have a deep lesion with good surveilance.  My last one was my deepest but it was there when #2 was removed and I had to convince a new doc that it should be removed.   It just wasn't in a good place to monitor, but after I realized that I could have more than 1 (there was no info or even the internet when I was originally diagnosed) – I knew that last one had to come off.

          So, in my view, nothing is really different even with #3.  BTW, how old are you?  Spitz nevi aren't that common in folks over 20.

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          Janner
          Participant

            Do you have dysplastic nevus syndrome?  That typically isn't one of the genes they test for but has a higher risk of multiple primaries.  What will testing get you?   I've had 3 and am positive for CDKN2A and….. so what.  I already know I'm high risk for other primaries.  I did my testing as part of a clinical trial so it made sense to 'give back' but I don't see the point otherwise.  It changes nothing in the way I am monitored.

            No onc will give you a PET/CT for stage 0 in situ lesions.  They are still controversial for stage III/IV but you are not there.  Your insurance wouldn't cover it.  People with multiple primaries actually have better overall survival statistics. 

            I go to the derm every 6 months – "6 months for life" as my derm says.  My first primary was 22 years ago, my last was 14 years ago.  I don't have dysplastic nevus syndrome – I don't have enough moles.  But yes, I think it is possible not to have a deep lesion with good surveilance.  My last one was my deepest but it was there when #2 was removed and I had to convince a new doc that it should be removed.   It just wasn't in a good place to monitor, but after I realized that I could have more than 1 (there was no info or even the internet when I was originally diagnosed) – I knew that last one had to come off.

            So, in my view, nothing is really different even with #3.  BTW, how old are you?  Spitz nevi aren't that common in folks over 20.

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            Janner
            Participant

              Do you have dysplastic nevus syndrome?  That typically isn't one of the genes they test for but has a higher risk of multiple primaries.  What will testing get you?   I've had 3 and am positive for CDKN2A and….. so what.  I already know I'm high risk for other primaries.  I did my testing as part of a clinical trial so it made sense to 'give back' but I don't see the point otherwise.  It changes nothing in the way I am monitored.

              No onc will give you a PET/CT for stage 0 in situ lesions.  They are still controversial for stage III/IV but you are not there.  Your insurance wouldn't cover it.  People with multiple primaries actually have better overall survival statistics. 

              I go to the derm every 6 months – "6 months for life" as my derm says.  My first primary was 22 years ago, my last was 14 years ago.  I don't have dysplastic nevus syndrome – I don't have enough moles.  But yes, I think it is possible not to have a deep lesion with good surveilance.  My last one was my deepest but it was there when #2 was removed and I had to convince a new doc that it should be removed.   It just wasn't in a good place to monitor, but after I realized that I could have more than 1 (there was no info or even the internet when I was originally diagnosed) – I knew that last one had to come off.

              So, in my view, nothing is really different even with #3.  BTW, how old are you?  Spitz nevi aren't that common in folks over 20.

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                bekahboo82
                Participant

                  Janner, 

                  I was hoping you would chime in!  You always have good advice.  I am 33 years old.  I have had a few other Spitz nevi removed along the way.  I initially considered getting a second opinion when I had the first Spitz (2009) but my surgeons all have the utmost confidence in our DermPath.  I am an RN in Plastic Surgery at a large University teaching hospital.  Apparently our main DermPath (the guy who reads my stuff) is well-known.  I was told he is sent stuff from the armed forces to read.  So I feel pretty confident in him.  Thoughts?

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                  bekahboo82
                  Participant

                    Janner, 

                    I was hoping you would chime in!  You always have good advice.  I am 33 years old.  I have had a few other Spitz nevi removed along the way.  I initially considered getting a second opinion when I had the first Spitz (2009) but my surgeons all have the utmost confidence in our DermPath.  I am an RN in Plastic Surgery at a large University teaching hospital.  Apparently our main DermPath (the guy who reads my stuff) is well-known.  I was told he is sent stuff from the armed forces to read.  So I feel pretty confident in him.  Thoughts?

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                    bekahboo82
                    Participant

                      Janner, 

                      I was hoping you would chime in!  You always have good advice.  I am 33 years old.  I have had a few other Spitz nevi removed along the way.  I initially considered getting a second opinion when I had the first Spitz (2009) but my surgeons all have the utmost confidence in our DermPath.  I am an RN in Plastic Surgery at a large University teaching hospital.  Apparently our main DermPath (the guy who reads my stuff) is well-known.  I was told he is sent stuff from the armed forces to read.  So I feel pretty confident in him.  Thoughts?

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                      Janner
                      Participant

                        As long as you excise the Spitz nevi like they COULD be melanoma with margins, it doesn't really matter the diagnosis.  33 is pretty old for Spitz.  I've researched all the dermpaths who typically read my slides and am comfortable with their qualifications.  I know who they send them to if there is any questionable diagnosis.  My derm's wife is actually one of the dermpaths who has read mine, my Mom's and my Dad's lesions.   As long as you are comfortable with things, then go with it.  

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                        Janner
                        Participant

                          As long as you excise the Spitz nevi like they COULD be melanoma with margins, it doesn't really matter the diagnosis.  33 is pretty old for Spitz.  I've researched all the dermpaths who typically read my slides and am comfortable with their qualifications.  I know who they send them to if there is any questionable diagnosis.  My derm's wife is actually one of the dermpaths who has read mine, my Mom's and my Dad's lesions.   As long as you are comfortable with things, then go with it.  

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                          Janner
                          Participant

                            As long as you excise the Spitz nevi like they COULD be melanoma with margins, it doesn't really matter the diagnosis.  33 is pretty old for Spitz.  I've researched all the dermpaths who typically read my slides and am comfortable with their qualifications.  I know who they send them to if there is any questionable diagnosis.  My derm's wife is actually one of the dermpaths who has read mine, my Mom's and my Dad's lesions.   As long as you are comfortable with things, then go with it.  

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