Stage 1A with dysplastic nevus syndrome
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Stage 1A with dysplastic nevus syndrome

› Forums › General Melanoma Community › Stage 1A with dysplastic nevus syndrome

  • Post
    • July 30, 2014 at 2:55 am
    Sherbear
    Participant

    Hi this is my first time posting.  I'm especially interested in Janners response:). I've read a lot of your replies.  I had a .3 mm depth stage 1A in November.  In June of this year I was told I had an in situ on my back but I go to U Of M for surgeries and my derm sends the oaths to them….they changed that ex to moderately atypical hyperplasia.  We still did the surgery as if it were in situ.  I know I shouldn't worry about recurrence?  But what are my chances of a second primary with dysplastic nevus syndrome?  I've had so many answers from we don't put a number on it to 20% from a good derm who said whether a person has one dysplastic mole or 50 their chances are 20% for a second primary.  I have two boys so young and this consumes me where I'm going to counseling.  I know someone who sees an oncologist and a derm for a stage 1 and yhe oncologist just does a second body scan and checks nodes and blood…. Thoughts?  This is so new to me that I need info!  I sure am afraid of this:(. 

     

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      • July 30, 2014 at 5:10 pm
      Janner
      Participant

      What are your chances of a second primary with dysplastic nevus syndrome?  I've seen odds listed from 8-80%.   There are some with DNS that have MANY primaries and there are some who have none or only 1.   Honestly, there is no way to predict this for you and you will have to learn to live with that possibility.  (It does get a little easier with time).  Just so you know, most people with multiple primaries catch their multiples earlier than their first.  They've learned to be vigilant!

      I suggest you find someone who does mole mapping.  Photography done at every visit to compare and look for changes.  I know UofMichigan (if that is the UofM you speak of) used to have this (my doc is a big believer and came from there).  But if you can't find someone who does that, at least get baseline photos done.  For me, photos give me the independent eye I need to make me feel better.  Keeps my imagination in check when you feel like something has changed.  You will have changes with DNS and you will learn to know which ones are more likely to be problematic, but that will only come with time and most likely biopsies.  Just so you know, your survival odds don't go down, though, those with multiple primaries actually have better survival stats.  Oh, and no I wouldn't see an oncologist.  Nothing they can do for you.  I personally think photographs are way more important.  All of your moles probably look funky, so just "looking" even with another set of eyes accomplishes nothing.  What you want to do is watch those that seem to change for the worse, and the only real way to do that is with photography, not a hit and miss visit with an onc.  Just my opinion.  I expect to find all my primaries (I've found my 3, not my docs) and do NOT rely upon my doc to find them.  I know me best!

      • July 30, 2014 at 5:10 pm
      Janner
      Participant

      What are your chances of a second primary with dysplastic nevus syndrome?  I've seen odds listed from 8-80%.   There are some with DNS that have MANY primaries and there are some who have none or only 1.   Honestly, there is no way to predict this for you and you will have to learn to live with that possibility.  (It does get a little easier with time).  Just so you know, most people with multiple primaries catch their multiples earlier than their first.  They've learned to be vigilant!

      I suggest you find someone who does mole mapping.  Photography done at every visit to compare and look for changes.  I know UofMichigan (if that is the UofM you speak of) used to have this (my doc is a big believer and came from there).  But if you can't find someone who does that, at least get baseline photos done.  For me, photos give me the independent eye I need to make me feel better.  Keeps my imagination in check when you feel like something has changed.  You will have changes with DNS and you will learn to know which ones are more likely to be problematic, but that will only come with time and most likely biopsies.  Just so you know, your survival odds don't go down, though, those with multiple primaries actually have better survival stats.  Oh, and no I wouldn't see an oncologist.  Nothing they can do for you.  I personally think photographs are way more important.  All of your moles probably look funky, so just "looking" even with another set of eyes accomplishes nothing.  What you want to do is watch those that seem to change for the worse, and the only real way to do that is with photography, not a hit and miss visit with an onc.  Just my opinion.  I expect to find all my primaries (I've found my 3, not my docs) and do NOT rely upon my doc to find them.  I know me best!

      • July 30, 2014 at 5:10 pm
      Janner
      Participant

      What are your chances of a second primary with dysplastic nevus syndrome?  I've seen odds listed from 8-80%.   There are some with DNS that have MANY primaries and there are some who have none or only 1.   Honestly, there is no way to predict this for you and you will have to learn to live with that possibility.  (It does get a little easier with time).  Just so you know, most people with multiple primaries catch their multiples earlier than their first.  They've learned to be vigilant!

      I suggest you find someone who does mole mapping.  Photography done at every visit to compare and look for changes.  I know UofMichigan (if that is the UofM you speak of) used to have this (my doc is a big believer and came from there).  But if you can't find someone who does that, at least get baseline photos done.  For me, photos give me the independent eye I need to make me feel better.  Keeps my imagination in check when you feel like something has changed.  You will have changes with DNS and you will learn to know which ones are more likely to be problematic, but that will only come with time and most likely biopsies.  Just so you know, your survival odds don't go down, though, those with multiple primaries actually have better survival stats.  Oh, and no I wouldn't see an oncologist.  Nothing they can do for you.  I personally think photographs are way more important.  All of your moles probably look funky, so just "looking" even with another set of eyes accomplishes nothing.  What you want to do is watch those that seem to change for the worse, and the only real way to do that is with photography, not a hit and miss visit with an onc.  Just my opinion.  I expect to find all my primaries (I've found my 3, not my docs) and do NOT rely upon my doc to find them.  I know me best!

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