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NED — kind of — is this everyone’s experience?

Forums General Melanoma Community NED — kind of — is this everyone’s experience?

  • Post
    Dynasysman
    Participant

    Had my first post-surgical scan on Tuesday.  A brain MRI pre-surgery revealed a "probable" melanoma behind my left ear.  As a result, we did a contrast-CAT in December that suggested nothing major was wrong.  My ONC decided to repeat it two months later (which was Tuesday).

    Tuesday's report was that the "probable" melanoma had not grown at all in three months, and may more likely have been a blood vessel captured at an odd angle.  So far so good…

    Had my first post-surgical scan on Tuesday.  A brain MRI pre-surgery revealed a "probable" melanoma behind my left ear.  As a result, we did a contrast-CAT in December that suggested nothing major was wrong.  My ONC decided to repeat it two months later (which was Tuesday).

    Tuesday's report was that the "probable" melanoma had not grown at all in three months, and may more likely have been a blood vessel captured at an odd angle.  So far so good…

    But another angle of the contrast-CAT revealed a small probably lymph node elsewhere in my left posterior neck region (where the problem started in the first place).  So…we need more pictures in 6-8 weeks before determining whether that's a problem or not.

    My ONC and surgeon both say they're not particularly worried, but this isn't exactly the same thing as "all clear".  Very frustrating.

    Is this the kind of "NED" experience other people have, or am I just stuck in a funny place?

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      Phil S
      Participant

      Yes, unfortunately I think a lot of people experience this kind of NED, with something showing up on a scan and the doctors deciding to wait and watch for changes.  My husband was diagnosed last January, and in April he had his first MRI which showed two small growths at the base of his skull.  We were then sent to Boston and a Brain Tumor Board, and they decided that due to the location of these spots the only option was to re-scan and see if there were changes. So several months and  three MRIs later, his doctors are now fairly certain that since these spots have never changed, this is not melanoma. We have also gone through this type of re-scanning on a rib issue. What a year it has been, the waiting and wondering makes me crazy sometimes.  But currently, Phil is NED from his last scans in mid-December, and although I know that nothing is ever 100% certain, we both try to live as if he is cancer free.  Good luck to you, you are in good company here.  Valerie (Phil's wife)

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      Phil S
      Participant

      Yes, unfortunately I think a lot of people experience this kind of NED, with something showing up on a scan and the doctors deciding to wait and watch for changes.  My husband was diagnosed last January, and in April he had his first MRI which showed two small growths at the base of his skull.  We were then sent to Boston and a Brain Tumor Board, and they decided that due to the location of these spots the only option was to re-scan and see if there were changes. So several months and  three MRIs later, his doctors are now fairly certain that since these spots have never changed, this is not melanoma. We have also gone through this type of re-scanning on a rib issue. What a year it has been, the waiting and wondering makes me crazy sometimes.  But currently, Phil is NED from his last scans in mid-December, and although I know that nothing is ever 100% certain, we both try to live as if he is cancer free.  Good luck to you, you are in good company here.  Valerie (Phil's wife)

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        LynnLuc
        Participant

        I had my melanoma cut out and am on a vaccine trial. I am NED ( no evidence of disease) because I have no melanoma that can be found -I know we have the microcells floating around so when or/ if they land and start to grow this will no longer be the case…I don't know why they use NED when perhaps a better word would be remission…

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        LynnLuc
        Participant

        I had my melanoma cut out and am on a vaccine trial. I am NED ( no evidence of disease) because I have no melanoma that can be found -I know we have the microcells floating around so when or/ if they land and start to grow this will no longer be the case…I don't know why they use NED when perhaps a better word would be remission…

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      MRFUser2011
      Participant

      I am pretty new here and NED is a new phrase to me.  But I have not been seeing a melanoma specialist, just a local oncologist who consults with UCSF docs.  Anyway, I have never once had a scan that didn't show something.  Some things have resolved, some are constant so considered part of my physiology now (which is apparently not "normal"), some have grown only to shrink, and some have grown until they reached the point they were a concern (like current lung mets, largest of which comes out next week).  So even if I had been posting since my dx in 4/08, not sure I would ever be declared NED "officially".

      Like others have said on this board, I have lived my life without dwelling on melanoma as much as possible.  I find that allowing myself to be gripped by doubts and fear just saps my energy and makes it hard to sleep at night.  I figured out pretty quickly that I had to "look the other way" in between scans and derm visits.  That said, I HATE scan time – feels like aliens are peering into me and then holding back the info until it is convenient to reveal it!  I would say during those couple days from scan to findings are when all my stored up doubt and fear raises it's head!  I am guessing the same is true for many others.

      Unfortunately, this is a disease that involves a lot of "wait and watch".  I think learning to manage that well can really add to one's health because stress is most obviously a big immune suppressant.  If feeling like you are NED between scans makes you feel better, then I say go with saying you are NED!  

      Blessings, Shari

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      MRFUser2011
      Participant

      I am pretty new here and NED is a new phrase to me.  But I have not been seeing a melanoma specialist, just a local oncologist who consults with UCSF docs.  Anyway, I have never once had a scan that didn't show something.  Some things have resolved, some are constant so considered part of my physiology now (which is apparently not "normal"), some have grown only to shrink, and some have grown until they reached the point they were a concern (like current lung mets, largest of which comes out next week).  So even if I had been posting since my dx in 4/08, not sure I would ever be declared NED "officially".

      Like others have said on this board, I have lived my life without dwelling on melanoma as much as possible.  I find that allowing myself to be gripped by doubts and fear just saps my energy and makes it hard to sleep at night.  I figured out pretty quickly that I had to "look the other way" in between scans and derm visits.  That said, I HATE scan time – feels like aliens are peering into me and then holding back the info until it is convenient to reveal it!  I would say during those couple days from scan to findings are when all my stored up doubt and fear raises it's head!  I am guessing the same is true for many others.

      Unfortunately, this is a disease that involves a lot of "wait and watch".  I think learning to manage that well can really add to one's health because stress is most obviously a big immune suppressant.  If feeling like you are NED between scans makes you feel better, then I say go with saying you are NED!  

      Blessings, Shari

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      Drew N
      Participant

      This seems to be the typical process. All of those wonderful tools (MRI, US, etc) are each good for specific things, and all can show more detail than is useful, so the only thing to do when in doubt is to compare the same "view" with the same tool over time. I just went through this with liver mets, which have now been diagnosed harmless, only to be replaced by something "different" at my surgical site, which is now (as of this afternoon) also nothing. I'm grateful, and not getting any 10 year warranties on ANYTHING if it costs extra!

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      Drew N
      Participant

      This seems to be the typical process. All of those wonderful tools (MRI, US, etc) are each good for specific things, and all can show more detail than is useful, so the only thing to do when in doubt is to compare the same "view" with the same tool over time. I just went through this with liver mets, which have now been diagnosed harmless, only to be replaced by something "different" at my surgical site, which is now (as of this afternoon) also nothing. I'm grateful, and not getting any 10 year warranties on ANYTHING if it costs extra!

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