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Brand New to this AGAIN ! SNB done now what?

Forums General Melanoma Community Brand New to this AGAIN ! SNB done now what?

  • Post
    kbc123
    Participant

    I think now I have more information to go on.  Now I am totally confused as to treatment.  WAIT and WATCH?  Who invented those words anyway?

    I had my lymphoscintigraphy, (twice actually-at preadmission for mapping and then again on surgery day) I had SNB and Wide Resection last week.  My results are one lymph node is clear and the other shows….one node with single minute aggregate of Mart-1 immunoreactive cells in the subscapular location.. 

    I think now I have more information to go on.  Now I am totally confused as to treatment.  WAIT and WATCH?  Who invented those words anyway?

    I had my lymphoscintigraphy, (twice actually-at preadmission for mapping and then again on surgery day) I had SNB and Wide Resection last week.  My results are one lymph node is clear and the other shows….one node with single minute aggregate of Mart-1 immunoreactive cells in the subscapular location.. 

    Now hearing they are both completely clear would have been my request however my body says different I guess.  My doctor says that this is not that bad.  I am a little concerned about where to go from here.  He basically says all I do right now is go for my CT scans (chest abdomen and pelvis) for a baseline and see me in three months.  He also says to watch for any changes in my body. 

    I want to hear from anyone out there with any help with the following…. 

    A) Does anyone have info on that lymph node biopsy info above?

    B)  Did anyone out there start off where I am starting off right now? 

    C) Second opinons are always important.  Believe me,I am a believer in that.  Although I trust the doctor I go to however I would like another eye to look at this..where to go on the East coast?  I was thinking Univ or Penn or Sloan or whereever someone tells me to go at this point. 

    D)  I need a dermatologist for full body check.  Not sure about going to where I originally went for mole removal.  I feel like there has to be a Melanoma specialist specifically for that..I may be asking for a lot but I feel like a doctor that treats acne and Botox injections may not be for me?  I could be totally wrong but I searched specifically for that and nothing really comes up.

    So much for wanting to be 1A or 1B or even 2.  I guess I am 3 now?  Ugh.  God help me with this….. 

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  • Replies
      Ranisa
      Participant

      We should talk.  I have way too long of a story that is VERY simular to yours.  I don't like typing I can send you a message with my phone # or you can send me yours if you are interested in talking.

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      Ranisa
      Participant

      We should talk.  I have way too long of a story that is VERY simular to yours.  I don't like typing I can send you a message with my phone # or you can send me yours if you are interested in talking.

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      washoegal
      Participant

      Sounds like you are pretty much where I was, I had four Sentinal Nodes removed and 2 had microscopic amounts of Mel.  Staged at 3A.  I chose to have the rest of my lymph nodes removed, as it turned out was not necessary, but I don't regret the decission.  I was given the choice of interferon or Wait and Watch.  I chose wait and watch.  Only because as the doctor explained it to me the interferon did not seem to be a viable option for me. 

      Stage 3 is a odd place to be, not too many options though they are growing now.  It appears Sloan may have access to some of those, if you feelthe need to do something.  It's only been 10 months for me so its hard to say how my strategy is working, but so far I'm good.

       

      Yes, you need regular (6 months minimum) check with a dermatologist.  And no matter what road you end up on, you are going to join us all on the fun road to scans.  Other than that, hopefully, you will be able to go about your life as you did before.

       

      Good Luck,

      Mary

      Stage 3

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      washoegal
      Participant

      Sounds like you are pretty much where I was, I had four Sentinal Nodes removed and 2 had microscopic amounts of Mel.  Staged at 3A.  I chose to have the rest of my lymph nodes removed, as it turned out was not necessary, but I don't regret the decission.  I was given the choice of interferon or Wait and Watch.  I chose wait and watch.  Only because as the doctor explained it to me the interferon did not seem to be a viable option for me. 

      Stage 3 is a odd place to be, not too many options though they are growing now.  It appears Sloan may have access to some of those, if you feelthe need to do something.  It's only been 10 months for me so its hard to say how my strategy is working, but so far I'm good.

       

      Yes, you need regular (6 months minimum) check with a dermatologist.  And no matter what road you end up on, you are going to join us all on the fun road to scans.  Other than that, hopefully, you will be able to go about your life as you did before.

       

      Good Luck,

      Mary

      Stage 3

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      EmilyandMike
      Participant
      Same story here…one or two cells on the sentinel node. My husband chose not to do interferon. But if his breslow and mitotic rates were higher maybe he would have gone that route because there just aren’t any other options unless you do a trial. There is one clinical trial for 3a but you must join within a couple weeks of the complete node dissection (ipilumamab) and it is blinded with 50/50 chance of getting the drug. If you go to a melanoma center of excellence, you will get a full body skin exam. My husband sees an oncologist or dermatologist every 3 mos (rotating schedule) and has scans every 6 months. I would go to Sloan if that is an option for you, but they won’t offer you interferon there so be aware of that if you cant stand the thought of “observation” which is the other term for watch an wait. Both are equally crappy but in my opinion so is interferon..but there are new drugs on the horizon that might change the limited options for stage 2/3 melanoma. You will be an expert on all of this in no time!

      Emily – wife of mike – 18 mos NED

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        Oregon Wife
        Participant

        We are brand new to this too….Stage IIB on January 10th,Stage III on February 10th after a WLE,Skin graft and a  SLNB that came back positive for the Sentile node that they removed. After  going  through those surgeries   Hubby refuses to have the lymph Node Dissection,but will try Interferon starting Monday, I think just to please me. We know the odds are not good with it,but afraid not to try something and  I don`t want to have the What Ifs.He said he will at least try it and hopefully he can at least make it through the 30 days high dose since I heard sometimes thats good enough.  Good Luck to You All

        Penny

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        Oregon Wife
        Participant

        We are brand new to this too….Stage IIB on January 10th,Stage III on February 10th after a WLE,Skin graft and a  SLNB that came back positive for the Sentile node that they removed. After  going  through those surgeries   Hubby refuses to have the lymph Node Dissection,but will try Interferon starting Monday, I think just to please me. We know the odds are not good with it,but afraid not to try something and  I don`t want to have the What Ifs.He said he will at least try it and hopefully he can at least make it through the 30 days high dose since I heard sometimes thats good enough.  Good Luck to You All

        Penny

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      EmilyandMike
      Participant
      Same story here…one or two cells on the sentinel node. My husband chose not to do interferon. But if his breslow and mitotic rates were higher maybe he would have gone that route because there just aren’t any other options unless you do a trial. There is one clinical trial for 3a but you must join within a couple weeks of the complete node dissection (ipilumamab) and it is blinded with 50/50 chance of getting the drug. If you go to a melanoma center of excellence, you will get a full body skin exam. My husband sees an oncologist or dermatologist every 3 mos (rotating schedule) and has scans every 6 months. I would go to Sloan if that is an option for you, but they won’t offer you interferon there so be aware of that if you cant stand the thought of “observation” which is the other term for watch an wait. Both are equally crappy but in my opinion so is interferon..but there are new drugs on the horizon that might change the limited options for stage 2/3 melanoma. You will be an expert on all of this in no time!

      Emily – wife of mike – 18 mos NED

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