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New. Need some help and answers
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New. Need some help and answers

› Forums › General Melanoma Community › New. Need some help and answers

  • Post
    • March 4, 2019 at 12:23 am
    Rebeccap82
    Participant

      36yo female otherwise healthy and active.  I am a Healthcare Provider with Primary Care.  Have one Daughter of a beautiful bright 4yo.  Was dx with Superficial Spreading Melanoma Jan 2019 at .85 Breslow depth and mitotic rate of 3.  They did a sentinel lymph node biopsy due to my mitotic rate of 3.   Lymphscintagraphy demostrated three sentinel lymph nodes to remove; one in my right inguinal and two from my left axilla.   I just found out my right inguinal node came back positive and am supposed to meet with oncologist next week.    Im wanted to see if there some people out there that 1. Have gone the route of Complete lymphnode dissection of the inguinal region or 2.  Have decided to go with observation with routine ultrasound and observation;  because I am looking at the literature and it seems a bit controversial in regards to decide to do lymph node disection on thin melanomas versus to observe?  There is a lot of morbitity with lymph node disection especially with the lower extremities;   I am extremley active with running/working out and snowboard every weekend (this is my therapy).    Or if there is anyone who has tried the anastomoses with the dissection?  Or someone my age who had a succesful outcome after inguinal lymph node dissection?  This is so stressful and the waiting game to decide what the treatment plan will be is torture.  Was just hoping to connect with some people with a similar story.  Thank you!

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        • March 4, 2019 at 12:37 am
        ed williams
        Participant

          Hi Rebecca, I am going to give you a couple of links, first one to Onclive series of videos covering adjuvant stage 3 options and research from last years ASCO meetings in Chicago. Second link is a surgeon from Chicago talking about stage 3 and CLND and the current research that shows no survival advantage in doing complete dissections. https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/adjuvant-therapy-options-in-melanoma                                                           https://www.youtube.com/watch?v=p_T186r5gIE

          • March 4, 2019 at 12:59 am
          Bubbles
          Participant

            Like Ed's info will show…..we once did complete lymphadenectomies for patients with a sentinel node that was positive for melanoma.  That is no longer the standard of care!!!  Check out Ed's links.  There is also this primer I put together regarding treatment options for Stage III and Stage IV patients that you might find helpful:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

            I understand the fear and dismay.  I was a 39 year old Stage IIIB melanoma patient with a 10 and 12 year old in 2003.  But, I am still here!!!  You can do this.  This board is home to lots of smart caring peeps.  Ask more questions as you have the need.  I wish you my best.  Celeste

              • March 4, 2019 at 4:09 am
              Rebeccap82
              Participant

                Bubbles,  Thank you so much appreciate your caring words ❤️

              • March 6, 2019 at 8:18 pm
              jchristianson
              Participant

                Hi rebecca.  before i begin i would like to mention that i had no clue according to ed williams posts that a complete lymph node dissection was no longer the standard of care.  if that is the route you choose to take, i can only give you my experience.  i was diagnosed with Stage 3B in 2014 and was being treated at Johns Hopkins.  my mole was on my right leg, and my sentinal node tested positive for MM.  i did go through a complete lymph node dissection in my right groin.  like you, am a relatively healthy person who had just been discharged out of the military.  in 2014 the only option presented to me was to have this surgery and to start immunotherapy (interfuron).  as far as the surgery was concerned, recovery was painfull, for about 2ish weeks.  5 years later i do suffer for minimal lymphadema (not even noticeable).  i also opted to not go on immunotherapy becuase the risk vs. reward was not worth it to me.  now that it is 2019, there are so many other options regarding immunotherapy.  trust me, i understand how stressfull this is, and if i could just give you one piece of advice: STAY POSITIVE!  you truly have to believe it.

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