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  • #20670
    cut52
    Participant

    I will be having my LND on my right groin Oct.16th. I have already set up a therapist who specializes in lymphedema cases, and am being proactive in getting a fitting for a full leg sock. It is very important for me to try and avoid lymphedema because I am a pilot and flying does make it worse. Also, in the procedure, does anybody know approximately how many nodes are taken out and if they actually do leave some in. If none are left in, how does the body compensate for lymph flow? Some people don’t get lymphedema, so there must be some mechanism of routing of fluid? Dale, 111a

    #56855
    Linny
    Participant

    That’s great that you’ve a’lready contacted a therapist.

    Since you’re having an LND as opposed to a sentinel node biopsy (SNLB) they will be removing most of the nodes from your right groin. I don’t know how many that would encompass but it can number somewhere in the teens. But that’s a guess on my part. They don’t want to leave any behind in case they may contain melanoma cells.

    I’m not sure how the body compensates for the lymph flow and would also love to know the answer to that. I had an LND done on my left axilla and can tell you that the fluid does flow somehow because when I give myself a lymph massage on a hot day, I can actually feel it moving back down my arm toward where the lymph nodes were and since I have little or no swelling, it’s going somewhere…LOL.

    Your therapist will also discuss other precautions you’ll need to take, such as carrying antibiotic ointment and bandaids with you in case you get a cut or insect bite on the affected leg. If you travel out of country, you may also want to have a prescription of antibiotics on you in the event you get an infection on that affected leg.

    #56856
    Catherine Poole
    Keymaster

    I would sit down and have a lengthy discussion with your surgeon. Does he/she do this procedure a lot? They don’t need to take all of the nodes unless that is his/her plan. Our bodies are full of lymph nodes in many areas of the body and they will take up the slack for any that are removed. I’ve heard the groin dissection is a bit more difficult with lymphedema that axial (around the arm)

    Remind me if your SLNB showed micro mets to how many nodes? That often can be the deciding point on how aggressively they take the nodes. I wish you well on this surgery and know how anxiety provoking it can be.

    #56857
    Shirley Z
    Participant

    Hi Dale,

    I had a groin LND 6 yrs ago. They removed 20 nodes. I had macro mets so did not have a choice. Back then the LND’s were favored even for micro mets. Now, I believe with micro they can sometimes be followed by ultrasound verses the LND. As Catherine mentioned its best to discuss it with your surgeon.

    Yes, lymphedema can definitely be a problem. Especially being a pilot. Unfortunately, flying gets very uncomfortable for me. I wear a compression stocking, drink plenty of water and try to get up and move around during the flight if possible. I now have added problems due to bloodclots in my axillary and subclavian last year. Traveling for me by either car or flight is never fun.

    I hope you will be one of the lucky ones not effected by lymphedema. It can be difficult, especially with your job profession.

    Good Luck to you and keep us posted.

    Shirley

    #56858
    cut52
    Participant

    Catherine, I had two lympn nodes removed at the same time as my WLE and one came back with 3 micro foci plus single scattered cells. The largest focus is 0.35mm maximum dimension, and they are subcapsular and parenchymal. I just had an appointment with my medical oncologist today, and got the rundown on Interferon. I think he knows I probably will not opt for Interferon, but my final decision on that will come after my surgery for LND of my groin. That surgery is set for the 16th of this month. Funny thing is, I had a lengthy talk about trials with him, and he actually called me at my home tonight at 8:30 P.M. and let me know there will probably be a trial coming up here in Canada similar to your U.S. trial of Inteferon vs. Yervoy. Interesting?

    #56859
    Catherine Poole
    Keymaster

    I would ask about other trials too. The Mage A3 trial is very interesting for stage III. It may be moving to approval and Yervoy may get approved for stage III as well after the trials are completed. We certainly need viable options for stage III therapies! I always maintain that melanoma being an immune responsive disease is often best fought by keeping our immune systems healthy through healthy living habits and certainly taking something very toxic can’t be good for that. Stage IV therapies have moved that direction of being less toxic and working with the immune system.

    #56860
    cut52
    Participant

    Hi, Three days after surgery, and not too bad!! Pain was greatest yesterday, but a little better today. The LND was a partial, or surface, so I am hoping they all will be free of disease. Also, draining quite a bit into my drain bottle, and quite a bit of swelling in the upper part of my leg. Wondering if this will go down in time.

    #56861
    Catherine Poole
    Keymaster

    Happy to hear it is all over with. Hope you heal quickly but take it easy for a while.

    #56862
    Linny
    Participant

    I’m glad to read that you’re doing well. It’s amazing how fast the body starts to heal itself after surgery, isn’t it? It’s not unusual to experience some swelling after a surgery but I’d give the doctor a call just to get an idea of what “normal” swelling would be for this type of surgery. Definitely do as Catherine advised: take it easy. :D

    #56863
    cut52
    Participant

    Got great news yesterday, all 11 lymph nodes removed and the one suspect mole on my back came back clear, NED!!!

    #56864
    Catherine Poole
    Keymaster

    Even better news! Have a great weekend!

    #56865
    Shirley Z
    Participant

    Awesome News! Hope the healing process is going well.

    Shirley Z

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