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Struggling with decision on CLND – IIA

Forums Pediatric & AYA Melanoma Community Struggling with decision on CLND – IIA

  • Post
    dmp
    Participant

    Hi all,

    I was diagnosed with a 1.15mm, non-ulcerated, superficially spready melanoma on my right inner thigh just above my knee at the end of May by the Cleveland Clinic.  About two and a half weeks later, I had a wide excision and SLNB.  One of the two sentinel nodes came back positive for rare cells.  The recommendation from my doctor was that he would do it and recommended it as the current standard of care.  I did not get specific sizing back after requesting it.  So, I went to University Hospitals for a 2nd opinion and they got all of my reports and slides from the Cleveland Clinic (the cancer centers are about a mile away from each other and they can access records between hospitals.)  The sizing that came back was that the largest group of cells was .05mm.  The cells were in the subcapsular region according to UH but were termed parychemal region in the UH report.  So, I will just assume there were some in the parychemal region and most were subcapsular.Several studies in the past decade call into question if micrommetastases less than .1mm in SLNs should even be counted as positive.  UH's surgeon recommended CLND, but they called me to schedule a PET scan after their tumor board reviewed my case.  In the meantime, I was able to speak with Dr Charles Balch through a friend of my uncle's at MD Anderson since I had a question on the Melanoma Intergroup Trial that was referenced in the MSLT-II protocol.  It turns out that Dr Balch was a reviewer on the MSLT-II.  He was comfortable stating over the phone that the risks of CLND and immunotherapies were greater than going with observation.  The medical oncologist I spoke with yesterday understood that I had gone "down the rabbit hole" to find out there is no real right decision and suggested that unless they found metastases after the CLND, she would not recommend any immunotherapies at this time.  So, doing the CLND to qualify for trials at this time doesn;t make sense.  My sister-in-law, a pediatrician, reviewed the MSLT-II study and didn't feel that a CLND was worth the risk at this time.  I had a CLND scheduled for next Monday, but I postponed the surgery when the scheduler called today as I am not comfortable with the possible risks of lymphedema.  If my tumor had been ulcerated and/or the metastases had been larger in the SLN, I wouldn't even have thought twice about the CLND.  Maybe the PET scan on August 1st will provide more information.

    Should I try Mayo or MD Anderson for a 3rd opinion?  Am I stressing out too much about this decision?  I am an active person who runs, plays ice hockey once a week or more, windsurf, and race sailboats.  Is my fear of CLND complications and  lymphedema overblown?

    Thanks!

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  • Replies
      dmp
      Participant

      Sorry, my edit was bad.  I am Stage IIIA.  Technically T2a N3a M0.

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      Kim K
      Participant

      IMHO – No.  I would go for ultrasound monitoring of the nodal basin.  Lymphedema is very real and you have no idea on how your personal outcome will be.  Standard of care doesn't necessarily mean what is cutting edge and just not published yet or accepted as mainstream.  CLND is a major surgery moreso if it involves the groin.  Once done you can't take it back.

      Again IMHO, if it were me now knowing what I know, I would wait and monitor since if anything that is a micromet.  My stage IIA SNB was negative including using PCR technology.  I still progressed to stage IV at least 6 years later.  The good news is that it never recurred in my nodes and I still have them all minus the SNB.  Instead it went straight to my lung and pectoralis muscle.  After surgery and IL-2 in 2010, I am and still remain NED.  

      There is no right or wrong and in the end don't look back no matter what you decide.  This is a gray area weighing the very real risk of long term lifelong issues and complications, with the chance it may or may not affect your final outcome.  CLND would not have prevented me from going to stage IV.  With a minimal tumor burden in your nodes and as thin as your mel was (relatively speaking), for me, I would chose close monitoring instead.

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      ed williams
      Participant

      Hi DMP, the MSLT-11 is a game changer that backs up the Germany study from 2 years ago where they also found no survival benifit from CLND vs observation with ultra sound. I have two links to the MSLT-11 data and it is pretty clear that the risk of developing lymphadema is 24% in CLND group  vs 6% in the non CLND group. Best Wishes!!!Ed http://www.nejm.org/do/10.1056/NEJMdo005150/full/?query=featured_home and the second link to the study http://www.nejm.org/doi/full/10.1056/NEJMoa1613210

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      Bubbles
      Participant

      Here is a post I put together that gives a pretty complete history of the data relative to CLND in melanoma:

      https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/07/clnd-complete-lymph-node-dissection-in.html  

      Hope that helps.  I wish you well. Celeste

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      CindyJ
      Participant

      From my mom's experience…she had a ulcerated tumor on the bottom of her foot. When removed, the SNL (two places, groin and pelvic) showed microscopic cells. We elected to have the CLND in both areas when they got the rest of the foot margin. Quite a lot of those lymph nodes also had microscopic cells. She did get lymphedema, but massage therapy and draining finally took care of it.

      Fast forward a year and a half later, she now has a growing tumor further up the chain in her pelvic region. Considering all the trauma the CLND caused, and further spread anyway, we'd have not done it. I read somewhere that chasing this and removing lymph nodes can cause series other issues as they're in your body for a reason. We would have gone straight to an immunotheraphy trial, but she was just so spent.

      Best Wishes whatever you decide!

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