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2nd Melanoma – Scared and Confused

Forums General Melanoma Community 2nd Melanoma – Scared and Confused

  • Post
    lisa36
    Participant

    It has been a while since I have visited this board.  I keep the entire community in my thoughts and am frequently praying for all effected by this disease.

    It has been a while since I have visited this board.  I keep the entire community in my thoughts and am frequently praying for all effected by this disease.

    My first primary was dx in 2006 – Breslow .31 level 4 – SNB neg.  I just had my 5 year check up and was cleared for annual visits and told by my melanoma specialist the odds of this thing coming back are slim to none – Yippee! ….but wait, the next day I received a call from my derm who had removed a mole the week prior stating I have another melanoma.   Derm wants me to go back to melanoma specialist and have the SNB even tho it appears it was caught early.  This 2nd melanoma was a mole that was frozen off over a year and a half ago.  Both docs on mutiple occasions said this is NOT cancer and not to worry.  It started growing back pink –  not the original brown color.  It was then I insisted my derm remove it.   I am very concerned that this mole was not removed and sent for biopsy in the first place and am concerned of the accuracy of the pathology report  because of this.   Anyone have this experience?  Is it possible the mole was benign prior to it being burned off and then grew back malignant?  Is it more likely my doc missed this and burned off a melanoma?  Also, anyone have SNB with such thin lesions?

    Below is the path report. Most I understand but a few points are confusing.  Any help with interpretation is greatly appreciated.

    The bulk of the process is confined to the epidermis and there is only a small focus of papillary dermis involvement in one or two areas.  The thickness mesuresment seems to be largely accurate although it does extend focally to the base of the specimen.  The lesion would be classified as Clarks level 2 as the paillary dermis is only focally involved in these sections.  Breslows greater than .4mm – There is an asymmetrical melanocytic neoplasm with single malanocytes present diffusely thoughtout the epidermis with minimal melanin.  There is focal involvement of the dermis. Less than one mitotic figuer per high power field was seen.  Thereis a dense inflammatory infiltrate of lymphocytes as well.

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  • Replies
      lhaley
      Participant

      Lisa,

      Having multiple melanoma's is not the same as having your original metasticize, although I do understand you are scared.  I have had 6 primaries over the years.  I only had 1 SNB and it was for a very thin one. The original mole had been removed by my family Dr. (insurance issues) and came back benign. When it grew back and was then removed by a dermatologist it came back as melanoma.   It was suggested that I had an SNB to be sure.  It came back negative.  Hopefully your SNB will be negative. Staging might not be totally accurate but making sure that it did not spread is of importance.  It's better to be safe than sorry!

      You said that your first was a Breslow of .31  , that is very thin, was there a reason that they did an SNB?

      Let us know the results!

      Linda

      Stage IV since 06

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        lisa36
        Participant

        The reason for the original SNB was the clarks level 4 and I was one week postpartum.  My  lymph nodes felt a bit "lumpy" to my derm and she stated with the deep clarks level ( was on upper abdomen where my skin is very thin) she wanted to be as aggressive as possible.  I am sure the "lumpy lymph nodes" was just my milk coming in. but back then I was hormonal and very scared so I did what they told me to do.  Thank you for your reply.  It puts my mind at ease.

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        lisa36
        Participant

        The reason for the original SNB was the clarks level 4 and I was one week postpartum.  My  lymph nodes felt a bit "lumpy" to my derm and she stated with the deep clarks level ( was on upper abdomen where my skin is very thin) she wanted to be as aggressive as possible.  I am sure the "lumpy lymph nodes" was just my milk coming in. but back then I was hormonal and very scared so I did what they told me to do.  Thank you for your reply.  It puts my mind at ease.

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      lhaley
      Participant

      Lisa,

      Having multiple melanoma's is not the same as having your original metasticize, although I do understand you are scared.  I have had 6 primaries over the years.  I only had 1 SNB and it was for a very thin one. The original mole had been removed by my family Dr. (insurance issues) and came back benign. When it grew back and was then removed by a dermatologist it came back as melanoma.   It was suggested that I had an SNB to be sure.  It came back negative.  Hopefully your SNB will be negative. Staging might not be totally accurate but making sure that it did not spread is of importance.  It's better to be safe than sorry!

      You said that your first was a Breslow of .31  , that is very thin, was there a reason that they did an SNB?

      Let us know the results!

      Linda

      Stage IV since 06

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      JoanR
      Participant

      Hi Lisa, i can understnd your frustrations and going from elation to dispair in two days.  I have long been an advocate of staying away from derms when one has a melanoma dx. Derms are not oncologists. Did a derm "burn off" the mole ? There are still derms doing shave bx and freezing, and this is particulary bad when a patient has had a previous mel dx.  Mel can be in many forms, and colourless is not all that uncommon, also just an ichy spot can indicate mel,  I am sure you will be fine now this has been found early, and you are lucky to have a mel specialist to go to. Best of luck and keep us uptodate ..J

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      JoanR
      Participant

      Hi Lisa, i can understnd your frustrations and going from elation to dispair in two days.  I have long been an advocate of staying away from derms when one has a melanoma dx. Derms are not oncologists. Did a derm "burn off" the mole ? There are still derms doing shave bx and freezing, and this is particulary bad when a patient has had a previous mel dx.  Mel can be in many forms, and colourless is not all that uncommon, also just an ichy spot can indicate mel,  I am sure you will be fine now this has been found early, and you are lucky to have a mel specialist to go to. Best of luck and keep us uptodate ..J

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      Janner
      Participant

      First, sorry you have to come back here.  Second, NEVER let any doctor freeze a lesion – especially if it is pigmented!  Just not done for a melanoma patient.  You want everything biopsied unless you know for CERTAIN it isn't melanoma.  Period.  Is your derm a melanoma specialist?  Anything new, different, changing should be biopsied.  If your derm won't do it, find another doc.  You need to feel that they are working WITH you!  It is certainly possible that the original lesion wasn't melanoma but the freezing caused changes and it became malignant.  It's possible, but you will never know for sure either way.

      No, it is not typical to have a SNB for a .31mm lesion.  However, some facilities would do that if it was Clark's Level IV as that was considered higher risk.  Since your original lesion was CL IV, then it is not out of the ordinary to have a SNB in that situation.  It appears the second melanoma was biopsied via a shave biopsy – they didn't get the bottom of it.  Most of us with multiple primaries prefer our derms to use punch biopsies instead of shaves.  Punch biopsies typically get the entire depth although they require a stitch or two to close.  (Derms often like to do shave biopsies as they are easier and require no stitches).  As it is, your lesion is AT LEAST .4mm but actually could be deeper (although the pathologist thinks that's probably close to the final depth).  You won't ever know the real depth as it has to be removed in one biopsy sample only.  Since this lesion was frozen originally, and since the actual depth will never be known for sure, I could see having a SNB on this lesion as well.  However, if you don't want it, don't do it.  I think this one is up to you – you could argue either way.  The Clark's Level is only Clarks Level II so it isn't in the same category as your original lesion with a Clark's Level IV even through the Breslow depth is deeper.  For otherwise low risk lesions, most SNB's aren't done until 1mm. 

      In the end, do what makes YOU comfortable.  You are the only one who needs to be happy (well, as happy as you can be fighting with this beast).  Sorry you are dealing with another primary – it sucks.  I had my first of three almost 19 years ago.  I am still stage IB.

      Best wishes,

      Janner

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        lisa36
        Participant

        Thanks Janner and yes, what a lesson this has been.  Hopefully one that will never cause me problems in the future. I will insist on punch biopsies.  I think it best to have the SNB since I have no idea what this lesion has been doing under the scar of the freeze.  Ugh! i can't believe I did not have enough sense to insist on a biopsy in the first place.  Thanks again.

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        lisa36
        Participant

        Thanks Janner and yes, what a lesson this has been.  Hopefully one that will never cause me problems in the future. I will insist on punch biopsies.  I think it best to have the SNB since I have no idea what this lesion has been doing under the scar of the freeze.  Ugh! i can't believe I did not have enough sense to insist on a biopsy in the first place.  Thanks again.

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      Janner
      Participant

      First, sorry you have to come back here.  Second, NEVER let any doctor freeze a lesion – especially if it is pigmented!  Just not done for a melanoma patient.  You want everything biopsied unless you know for CERTAIN it isn't melanoma.  Period.  Is your derm a melanoma specialist?  Anything new, different, changing should be biopsied.  If your derm won't do it, find another doc.  You need to feel that they are working WITH you!  It is certainly possible that the original lesion wasn't melanoma but the freezing caused changes and it became malignant.  It's possible, but you will never know for sure either way.

      No, it is not typical to have a SNB for a .31mm lesion.  However, some facilities would do that if it was Clark's Level IV as that was considered higher risk.  Since your original lesion was CL IV, then it is not out of the ordinary to have a SNB in that situation.  It appears the second melanoma was biopsied via a shave biopsy – they didn't get the bottom of it.  Most of us with multiple primaries prefer our derms to use punch biopsies instead of shaves.  Punch biopsies typically get the entire depth although they require a stitch or two to close.  (Derms often like to do shave biopsies as they are easier and require no stitches).  As it is, your lesion is AT LEAST .4mm but actually could be deeper (although the pathologist thinks that's probably close to the final depth).  You won't ever know the real depth as it has to be removed in one biopsy sample only.  Since this lesion was frozen originally, and since the actual depth will never be known for sure, I could see having a SNB on this lesion as well.  However, if you don't want it, don't do it.  I think this one is up to you – you could argue either way.  The Clark's Level is only Clarks Level II so it isn't in the same category as your original lesion with a Clark's Level IV even through the Breslow depth is deeper.  For otherwise low risk lesions, most SNB's aren't done until 1mm. 

      In the end, do what makes YOU comfortable.  You are the only one who needs to be happy (well, as happy as you can be fighting with this beast).  Sorry you are dealing with another primary – it sucks.  I had my first of three almost 19 years ago.  I am still stage IB.

      Best wishes,

      Janner

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      A
      Participant

      I am sorry about your second mm. Of course, no it is not possible to say whether first lesion (frozen one) was malignant or not. However, the chances are that it wasn't since both docs were absolutely not concerned about it back then.

      Could you please describe how this new "pink regrowth" looked like? Thanks!

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        Vermont_Donna
        Participant

        How frustrating to be so close to the five year mark and then bam, this new lesion! You have received good advice above. I hope everyhting comes out clear. It would be good to see if this is a new primary or a metastasis. Just a note…..my melanomas have looked different…..some were flesh colored, some were a blue "smudge" on the skin looking like a bruise (punch biposy confirmed mel), others were a blue nodule, a purple nodule, a blue and black nodule, pink nodules, and sub'qs…just lumps under the skin. I had many of the lesions biopsied and all have been mel. So the thing to do is be VIGILANT about any changes on/in your skin.

        Vermont_Donna

        stage 3a, stable after 4 infusions of Ipi

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        Vermont_Donna
        Participant

        How frustrating to be so close to the five year mark and then bam, this new lesion! You have received good advice above. I hope everyhting comes out clear. It would be good to see if this is a new primary or a metastasis. Just a note…..my melanomas have looked different…..some were flesh colored, some were a blue "smudge" on the skin looking like a bruise (punch biposy confirmed mel), others were a blue nodule, a purple nodule, a blue and black nodule, pink nodules, and sub'qs…just lumps under the skin. I had many of the lesions biopsied and all have been mel. So the thing to do is be VIGILANT about any changes on/in your skin.

        Vermont_Donna

        stage 3a, stable after 4 infusions of Ipi

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        lisa36
        Participant

        It was originally a light brownish frekle, however, it was larger than the others on my arm.  It grew back the same shape as before, but had a pinkish tint.  Almost like it was slowly reappearing. .  It did have color variances such as light pink in some spots and dark brownish pink in others, but you had to look very close to make out the differences.  And the pinkish tint did not initially concern me because it seemed consistant with the color of dammaged skin ( pink from a scar..etc.)

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        lisa36
        Participant

        It was originally a light brownish frekle, however, it was larger than the others on my arm.  It grew back the same shape as before, but had a pinkish tint.  Almost like it was slowly reappearing. .  It did have color variances such as light pink in some spots and dark brownish pink in others, but you had to look very close to make out the differences.  And the pinkish tint did not initially concern me because it seemed consistant with the color of dammaged skin ( pink from a scar..etc.)

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      A
      Participant

      I am sorry about your second mm. Of course, no it is not possible to say whether first lesion (frozen one) was malignant or not. However, the chances are that it wasn't since both docs were absolutely not concerned about it back then.

      Could you please describe how this new "pink regrowth" looked like? Thanks!

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      alicia
      Participant
      Hi there I too have had multiple primary melanomas. I was originally diagnosed with stage 3 melanoma in 2006 2.3mm lesion Clarks IV, positive Sentinel Node. Did 11 mo of interferon. Then in July 2010 I had a second new primary melanoma .59mm and they only treated this melanoma with wide excision. Then December 2010 I was dx with a third melanoma new primary. The biopsy was a shave bx and the Mel was 1mm at least. After having the SNB and wide excision there was a 2.3 mm Clarks IV residual melanoma on the slab of skin removed from excision. My oncologist at Vandy believes I have a genetic mutation due to the multiple melanoma primaries and being young. I was 23 when my first Mel started to appear but turned 24 before I was actually diagnosed.

      About the SNB I say do what makes you feel comfortable. It is possible the derm could have burned off a mole that may or may not have been melanoma but developed into melanoma now. If I can be of any help please let me know. I know it’s scary when these things keep popping up. It seems just when I was starting to not think about melanoma on a daily basis it reared it’s ugly head. I’m sorry you are dealing with this just know you are not alone. Hugs!!!!

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      alicia
      Participant
      Hi there I too have had multiple primary melanomas. I was originally diagnosed with stage 3 melanoma in 2006 2.3mm lesion Clarks IV, positive Sentinel Node. Did 11 mo of interferon. Then in July 2010 I had a second new primary melanoma .59mm and they only treated this melanoma with wide excision. Then December 2010 I was dx with a third melanoma new primary. The biopsy was a shave bx and the Mel was 1mm at least. After having the SNB and wide excision there was a 2.3 mm Clarks IV residual melanoma on the slab of skin removed from excision. My oncologist at Vandy believes I have a genetic mutation due to the multiple melanoma primaries and being young. I was 23 when my first Mel started to appear but turned 24 before I was actually diagnosed.

      About the SNB I say do what makes you feel comfortable. It is possible the derm could have burned off a mole that may or may not have been melanoma but developed into melanoma now. If I can be of any help please let me know. I know it’s scary when these things keep popping up. It seems just when I was starting to not think about melanoma on a daily basis it reared it’s ugly head. I’m sorry you are dealing with this just know you are not alone. Hugs!!!!

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      Skm24
      Participant
      Hello! I came across your forum recently  I know it’s almost 10 years old but was curious how this worked out for you?

       

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      almostalice
      Participant
      Wow what are the chances? Vanderbilt?

      I was dx in 2004 in the UK, 1mm SSM and 6mm Ulcerated Nodular and denied or rather talked out of SLNB for both. Passed between pillar and post for quite some time before landing at the QE in Birmingham. Where we trundled along taking out future baddies and they all came back atypical.

      Until … Third primary in 2011 insitu still in the UK, and met with genetics some time later in Leeds at the time decided against testing. I was getting to be a good advocate for what was and wasn’t melanoma for my body.

      Settled in Nashville 2014, fourth primary in 2018 with SLNB oked, came up negative and well at this point decided on genetic testing and was in network for Vandy. Positive for FAMMM. I actually turned up at Vanderbilt and said hey I got a primary for you guys.

      An older next of kin now with first primary.

      Allllll that to say. Man this thing is never done, it’s with us forever. I can’t imagine how it feels to have a primary site come back for more in the same area.

      There must be some anxiety that comes with that even if they are early stage and thin.

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