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recently diagnosed with recurrence (previously in situ)

Forums Cutaneous Melanoma Community recently diagnosed with recurrence (previously in situ)

  • Post
    aynw
    Participant

    In late 2008 I was diagnosed with mm on my left thigh. Had a WLE in Nov 2008 that confirmed it was in situ and clear margins, so no further treatment was required, just skin checks every 6 months. In Jan 2011 I went to see my GP for a lump that was growing on my right calf. At the visit we noticed a mole of concern behind my knee about 4 inches away. I got into CancerCare right away and they removed both. Results came back 2 weeks ago – the lump was nothing of concern, but the mole was invasive mm – breslow of 1.65, clark level 4. I had surgery last week – WLE with skin graft and SLNB.

    In late 2008 I was diagnosed with mm on my left thigh. Had a WLE in Nov 2008 that confirmed it was in situ and clear margins, so no further treatment was required, just skin checks every 6 months. In Jan 2011 I went to see my GP for a lump that was growing on my right calf. At the visit we noticed a mole of concern behind my knee about 4 inches away. I got into CancerCare right away and they removed both. Results came back 2 weeks ago – the lump was nothing of concern, but the mole was invasive mm – breslow of 1.65, clark level 4. I had surgery last week – WLE with skin graft and SLNB. Now I am at home recovering and waiting for results. Because everything happened so quickly and I was scheduled for surgery at the same time we received the results, I haven't had a chance to really understand what the next steps may be, and I won't see my oncologist till mid-April.  Does anyone know what is a typical treatment for a recurrence like this?  I have an idea if there is lymph node involvement what will come, but what if they come back clear (hopefully)?  Is the surgery all, or should I expect more tests, therapy, etc?  I am frightened that this recurrence happened so quickly, as I had my last skin check in Oct and everything looked fine.  How can I be sure that there isn't something else happening that we can't see?  Any advice would be appreciated. 

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  • Replies
      MRFUser2011
      Participant

      It sounds like you have a lot of unanswered questions.  I can share with you the things I have learned during my journey with melanoma.  I don't say mistakes I made because I was doing the best I could at the time with what I knew, as we all are.  So if you find in the weeks ahead that there are things you wish you had done differently, don't be hard on yourself.  Learn and move on.  You want to minimize stress as much as possible and being kind to yourself is really important! If waiting until next month for more information is really going to be difficult for you, I would encourage you to call your oncologist's office and see if they can get you in earlier.  Even a week could make a big difference if you are feeling a lot of concern.

      I did not start by working with a melanoma specialist.  My dermatologist Dx my melanoma and sent me to a surgical oncologist that specializes in melanoma to perform my WME and node disection at a comprehensive cancer center 4 hours away, but then I returned home to the care of a general oncologist.  Fortunately, it worked out fine and when something became alarming she said "surgery" and I returned to my surgeon.  I have now seen a melanoma specialist twice and will continue to consult with him in the future.  I do my 3 month checks with my local dermatologist and scans with my general oncologist but feel having the added expertise will be important to my long term care.

      I would also suggest writing out your questions with space for each answer.  I know this sounds so simple but my first visit to the surgeon I had a list and no space for answers.  Time was limited and I jotted all my answers on separate pages and then when I went back to read them, a lot of it meant nothing to me.  I have found that going into an appointment prepared helps me get the best information.  This is routine for the doctors and I continue to learn about things I was not aware of, had no idea to ask the doctor and it didn't occur to the doctor to tell me.  So I just keep learning!  

      Ask for copies of EVERYTHING at your appointments.  It is much easier to collect it as you go than try to get it all later (another lesson I have learned).  I now have a binder with copies of all my reports, pathology findings, blood tests, etc.  I even have a set of disks of PET/CT scans and MRIs.  It just makes it so much easier when you need these things to have them at hand.  

      Don't overwhelm yourself by reading about every possible outcome or problem or treatment.  There is so much information out there, and some of it is pretty frightening, you can easily overwhelm yourself.  Start with the questions that occur to you and ask your own physicians.  This site is a great place for support and answers about what to expect with certain procedures or for information on certain treatments.  But your case is individual and remember that.  One of the best things a doctor told me is that statistics are for economizing medicine, not for predicting individual outcomes.  

      Blessings, Shari

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        MRFUser2011
        Participant

        I am new to the board and just wanted to apologize if my post came across as an impication that you would be facing any of the same things I have.  I just remember when I had my primary, I had a million questions and wish I had known then some of the things I do now.  I realize you having a second primary is not the same as metastasis and hope I did not alarm you in any way!

        Blessings, Shari

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        aynw
        Participant

        Thank you for the reply Shari.  The information and tips you provided will be helpful for me, now and into the future.  i did not in any way feel that you were suggesting anything but helpful guidance – so please , no worries! 

        Take care, Ayn    

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        aynw
        Participant

        Thank you for the reply Shari.  The information and tips you provided will be helpful for me, now and into the future.  i did not in any way feel that you were suggesting anything but helpful guidance – so please , no worries! 

        Take care, Ayn    

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        MRFUser2011
        Participant

        I am glad to know I didn't upset you, Ayn.  I hope that you get answers and some peace of mind when you see your doctor.

        Blessings, Shari

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        MRFUser2011
        Participant

        I am glad to know I didn't upset you, Ayn.  I hope that you get answers and some peace of mind when you see your doctor.

        Blessings, Shari

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        MRFUser2011
        Participant

        I am new to the board and just wanted to apologize if my post came across as an impication that you would be facing any of the same things I have.  I just remember when I had my primary, I had a million questions and wish I had known then some of the things I do now.  I realize you having a second primary is not the same as metastasis and hope I did not alarm you in any way!

        Blessings, Shari

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      MRFUser2011
      Participant

      It sounds like you have a lot of unanswered questions.  I can share with you the things I have learned during my journey with melanoma.  I don't say mistakes I made because I was doing the best I could at the time with what I knew, as we all are.  So if you find in the weeks ahead that there are things you wish you had done differently, don't be hard on yourself.  Learn and move on.  You want to minimize stress as much as possible and being kind to yourself is really important! If waiting until next month for more information is really going to be difficult for you, I would encourage you to call your oncologist's office and see if they can get you in earlier.  Even a week could make a big difference if you are feeling a lot of concern.

      I did not start by working with a melanoma specialist.  My dermatologist Dx my melanoma and sent me to a surgical oncologist that specializes in melanoma to perform my WME and node disection at a comprehensive cancer center 4 hours away, but then I returned home to the care of a general oncologist.  Fortunately, it worked out fine and when something became alarming she said "surgery" and I returned to my surgeon.  I have now seen a melanoma specialist twice and will continue to consult with him in the future.  I do my 3 month checks with my local dermatologist and scans with my general oncologist but feel having the added expertise will be important to my long term care.

      I would also suggest writing out your questions with space for each answer.  I know this sounds so simple but my first visit to the surgeon I had a list and no space for answers.  Time was limited and I jotted all my answers on separate pages and then when I went back to read them, a lot of it meant nothing to me.  I have found that going into an appointment prepared helps me get the best information.  This is routine for the doctors and I continue to learn about things I was not aware of, had no idea to ask the doctor and it didn't occur to the doctor to tell me.  So I just keep learning!  

      Ask for copies of EVERYTHING at your appointments.  It is much easier to collect it as you go than try to get it all later (another lesson I have learned).  I now have a binder with copies of all my reports, pathology findings, blood tests, etc.  I even have a set of disks of PET/CT scans and MRIs.  It just makes it so much easier when you need these things to have them at hand.  

      Don't overwhelm yourself by reading about every possible outcome or problem or treatment.  There is so much information out there, and some of it is pretty frightening, you can easily overwhelm yourself.  Start with the questions that occur to you and ask your own physicians.  This site is a great place for support and answers about what to expect with certain procedures or for information on certain treatments.  But your case is individual and remember that.  One of the best things a doctor told me is that statistics are for economizing medicine, not for predicting individual outcomes.  

      Blessings, Shari

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      FormerCaregiver
      Participant

      There are a number of tests that can be done, and your oncologist is
      probably the best person to talk to regarding what is needed at the moment.

      Here is some info on SLNB:
      http://www.cancer.gov/cancertopics/factsheet/Therapy/sentinel-node-biopsy

      This is about the scans that are available:
      http://skincancer.about.com/od/diagnosis/a/imaging.htm

      Frank

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      FormerCaregiver
      Participant

      There are a number of tests that can be done, and your oncologist is
      probably the best person to talk to regarding what is needed at the moment.

      Here is some info on SLNB:
      http://www.cancer.gov/cancertopics/factsheet/Therapy/sentinel-node-biopsy

      This is about the scans that are available:
      http://skincancer.about.com/od/diagnosis/a/imaging.htm

      Frank

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      Janner
      Participant

      Just so everyone can get on the same page….. A recurrence is when a melanoma spreads to another spot in your body.  A new primary is an independent mole that has turned into melanoma.  You HAVEN'T had a recurrence from your in situ mole.  You have had TWO primaries.  Your two moles are unrelated.  Anytime they give you a Breslow depth / Clark's Level on a mole, they are saying it is a primary. The melanoma started in that spot and didn't travel from somewhere else.  A recurrence doesn't have a depth.  So you are still NED (no evidence of disease) from your in situ melanoma, but now you have to deal with this second primary.

      So, it appears this new lesion is stage 1B or possibly stage IIA.  It depends on whether there was ulceration present on the pathology.  If the results are negative for the SNB, then the wide local excision (WLE) is likely all that will be done.  There aren't really any treatments for early stage melanoma except surgical removal.  Extra monitoring for additional primaries would be warranted.  You could also check out any clinical trials, but I haven't heard of any recently opening up for early stage individuals.  If the SNB results are positive, you would be upstaged to at least stage III.  You would be eligible for other treatments or clinical trials at this stage.

      Best wishes,

      Janner

      3 melanoma primaries, no recurrences, stage IB since 1992

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        Janner
        Participant

        I think I should clarify one of my statements.  When I said a recurrence has no depth, I don't want to confuse that with melanoma in situ which also has no depth.  What I meant was the pathology on a recurrence will state that it is metastatic disease and it will not be listing the normal things we look for like Clark's Level and Breslow depth. 

        In situ melanoma is Clark's Level 1 and Breslow 0.  So when your pathology report states Clark's Level and Breslow, we know it is a new primary and independent of any previous melanoma on your body.  If it had said it was metastatic disease, then they would have been looking for another primary.  Given the location of your first primary, it would have been an unlikely source for a recurrence in the current location.

        Best wishes,

        Janner

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        Janner
        Participant

        I think I should clarify one of my statements.  When I said a recurrence has no depth, I don't want to confuse that with melanoma in situ which also has no depth.  What I meant was the pathology on a recurrence will state that it is metastatic disease and it will not be listing the normal things we look for like Clark's Level and Breslow depth. 

        In situ melanoma is Clark's Level 1 and Breslow 0.  So when your pathology report states Clark's Level and Breslow, we know it is a new primary and independent of any previous melanoma on your body.  If it had said it was metastatic disease, then they would have been looking for another primary.  Given the location of your first primary, it would have been an unlikely source for a recurrence in the current location.

        Best wishes,

        Janner

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      Janner
      Participant

      Just so everyone can get on the same page….. A recurrence is when a melanoma spreads to another spot in your body.  A new primary is an independent mole that has turned into melanoma.  You HAVEN'T had a recurrence from your in situ mole.  You have had TWO primaries.  Your two moles are unrelated.  Anytime they give you a Breslow depth / Clark's Level on a mole, they are saying it is a primary. The melanoma started in that spot and didn't travel from somewhere else.  A recurrence doesn't have a depth.  So you are still NED (no evidence of disease) from your in situ melanoma, but now you have to deal with this second primary.

      So, it appears this new lesion is stage 1B or possibly stage IIA.  It depends on whether there was ulceration present on the pathology.  If the results are negative for the SNB, then the wide local excision (WLE) is likely all that will be done.  There aren't really any treatments for early stage melanoma except surgical removal.  Extra monitoring for additional primaries would be warranted.  You could also check out any clinical trials, but I haven't heard of any recently opening up for early stage individuals.  If the SNB results are positive, you would be upstaged to at least stage III.  You would be eligible for other treatments or clinical trials at this stage.

      Best wishes,

      Janner

      3 melanoma primaries, no recurrences, stage IB since 1992

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      dian in spokane
      Participant

      So sorry you are facing this, but glad that that little lump led you to this new primary. I do agree with Janner that this is not a recurrence, but a separate new primary, and so it will be treated accordingly. This will depend on the pathology results probably (ulceration, and SNB results)

      But it is entirely possible that you will have no further treatment besides surgery.

      Good Luck!

      dian in spokane

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      dian in spokane
      Participant

      So sorry you are facing this, but glad that that little lump led you to this new primary. I do agree with Janner that this is not a recurrence, but a separate new primary, and so it will be treated accordingly. This will depend on the pathology results probably (ulceration, and SNB results)

      But it is entirely possible that you will have no further treatment besides surgery.

      Good Luck!

      dian in spokane

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      mlbjab
      Participant

      How did your Dr's miss a 1.65 melanoma behind your knee?  Were you still having 6 months checkups when you found it?

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      mlbjab
      Participant

      How did your Dr's miss a 1.65 melanoma behind your knee?  Were you still having 6 months checkups when you found it?

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      mlbjab
      Participant

      How did your Dr's miss a 1.65 melanoma behind your knee?  Were you still having 6 months checkups when you found it?

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