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In Limbo with Acral Lentiginous Melanoma

Forums General Melanoma Community In Limbo with Acral Lentiginous Melanoma

  • Post
    2atlascedars
    Participant

    Hello,

    Hello,

    I am a very physically fit 45 y/o male, but I was just diagnosed last week with an Acral Lentiginous Melanoma. In the biopsy it was found to have a 3.7mm Breslow's Depth (Clark's Level IV), but it was not ulcerated and had a Mitotic Index of < 1 per mm2. In my first post-diagnosis exam there were no other lesions and no enlargement of the lymph nodes found.

    Next week I will have a sentinel node biopsy performed, along with a wide area excision of the melanoma. The surgeon said they will not bother with the lymph nodes in the knee area, but will focus solely on those in the inguinal region. Also, the surgeon mentioned a plan to take a 2 cm margin out with a skin graft from my thigh to close the defect.

    I was wondering if anyone had any advice for me at this point in the process. This feels like a bad dream…no a nightmare.

    Thanks,
    Mark

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  • Replies
      Fen
      Participant

      Hi Mark, I'm sorry you had to join us.    Initial diagnosis is always a nightmare- the whole thing is so scary and you have no idea where this it will go.  It gets easier as time goes on and you find more and more days between you and the diagnosis.  You just get used to it.

       It sounds like you have done your homework and understand the terms and processes. Are you being seen by a melanoma specialist?  This is crucial – melanoma is an unusual cancer so you want to see someone who knows it's vagaries.  General oncologists won't do.

      Please post with the results of your SNB.  Good luck!

      Fen

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      Fen
      Participant

      Hi Mark, I'm sorry you had to join us.    Initial diagnosis is always a nightmare- the whole thing is so scary and you have no idea where this it will go.  It gets easier as time goes on and you find more and more days between you and the diagnosis.  You just get used to it.

       It sounds like you have done your homework and understand the terms and processes. Are you being seen by a melanoma specialist?  This is crucial – melanoma is an unusual cancer so you want to see someone who knows it's vagaries.  General oncologists won't do.

      Please post with the results of your SNB.  Good luck!

      Fen

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      2atlascedars
      Participant

      Hi Fen,

      Thanks for your thoughts. I am being seen by a Melanoma specialist at Stanford University. Also the surgeon is pullling in a plastic surgeon with a specialty in reconstruction of the extremeties for my wide area excision and reconstruction.

      I was most worried by the Breslow depth of 3.7mm, but I have read that this scale can be difficult to associate to Acral Lentiginous Melanoma because it occurs on the sole of the foot where the skin is quite thick,

      I had been aware of the mark on my foot for about a year, and only became concerned when I decided to try to remove what I thought was just some kind of superficial staining on my heel which I thought was from something I stepped in (like grease). I used a calous file and it bled. I knew that wasn't normal so I immediately went to my doctor. Had I not caused the bleeding, I don't know how much longer it would have been before I had it examined. Prior to this, I had absolutely no idea that you could get a melanoma on the sole of the foot. I have always heard it was  moles and the areas exposed to the sun that were of concern. I was totally blind-sided by this.

      Thanks,
      Mark

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      2atlascedars
      Participant

      Hi Fen,

      Thanks for your thoughts. I am being seen by a Melanoma specialist at Stanford University. Also the surgeon is pullling in a plastic surgeon with a specialty in reconstruction of the extremeties for my wide area excision and reconstruction.

      I was most worried by the Breslow depth of 3.7mm, but I have read that this scale can be difficult to associate to Acral Lentiginous Melanoma because it occurs on the sole of the foot where the skin is quite thick,

      I had been aware of the mark on my foot for about a year, and only became concerned when I decided to try to remove what I thought was just some kind of superficial staining on my heel which I thought was from something I stepped in (like grease). I used a calous file and it bled. I knew that wasn't normal so I immediately went to my doctor. Had I not caused the bleeding, I don't know how much longer it would have been before I had it examined. Prior to this, I had absolutely no idea that you could get a melanoma on the sole of the foot. I have always heard it was  moles and the areas exposed to the sun that were of concern. I was totally blind-sided by this.

      Thanks,
      Mark

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      washoegal
      Participant

      Mark, Of course you are worried.  But you are at a good hospital and with some good experts.  Unfortunately, right now you are in a holding pattern until you get you Sentinal Node Biopsy back.  If all if clear, then you are in a pretty good place.  But you should think ahead to questions for the doctor just in case the Mel has made it to the lumph nodes.  Depending on whether or not there is micro or macro amounts of Mel in the Nodes, might change what you do.  The thoughts are changing.  I had micro involvement and had all my lymph nodes out anyway, but it was a personal choice not necessarily the doctors recommendation. 

      3.7 mm is not the end of the world, mine was 3.1 mm.  so we are fairly close.  You can do this and you can go on enjoying your life,  just another bump in the road (maybe a rather large one!)

      Good Luck

      Mary

      Stage 3

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      washoegal
      Participant

      Mark, Of course you are worried.  But you are at a good hospital and with some good experts.  Unfortunately, right now you are in a holding pattern until you get you Sentinal Node Biopsy back.  If all if clear, then you are in a pretty good place.  But you should think ahead to questions for the doctor just in case the Mel has made it to the lumph nodes.  Depending on whether or not there is micro or macro amounts of Mel in the Nodes, might change what you do.  The thoughts are changing.  I had micro involvement and had all my lymph nodes out anyway, but it was a personal choice not necessarily the doctors recommendation. 

      3.7 mm is not the end of the world, mine was 3.1 mm.  so we are fairly close.  You can do this and you can go on enjoying your life,  just another bump in the road (maybe a rather large one!)

      Good Luck

      Mary

      Stage 3

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      JOBA
      Participant

      Hi Mark,

      I am an almost 45 year old female that used to be very physically fit.  I am three years out from a diagnosis of Acral Lentiginous Melanoma.  Nice to meet you, there are not that many of us with ALM. 

      As you will find out everyone's tumor is different.  The best thing for you to do right now is not compare yourself to others, or try to read anything into the bad outcomes of others and how that relates to you.  

      You will get through all this physical stuff that they can throw at you, it is the mental stuff that will be the toughest work ahead.

      Feel free to be in touch if you would like to chat more.

      Best regards,

      Jo-Anne 

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      JOBA
      Participant

      Hi Mark,

      I am an almost 45 year old female that used to be very physically fit.  I am three years out from a diagnosis of Acral Lentiginous Melanoma.  Nice to meet you, there are not that many of us with ALM. 

      As you will find out everyone's tumor is different.  The best thing for you to do right now is not compare yourself to others, or try to read anything into the bad outcomes of others and how that relates to you.  

      You will get through all this physical stuff that they can throw at you, it is the mental stuff that will be the toughest work ahead.

      Feel free to be in touch if you would like to chat more.

      Best regards,

      Jo-Anne 

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