Home Forums Newly Diagnosed Stage III/IV facing a lymphadenectomy

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  • #62260
    charissa1969
    Participant

    Hi, everyone. Thank you for all the information and support. I am now 4 days post-surgery and not doing too bad. The pain is already getting much better and I am moving around. I woke up from surgery with my compression stocking on so that was taken care of for me. :) I have yet to hear about the results from the surgery but feel like it was a good decision. I’ve read the posts from Matt and would also encourage him to get the surgery. I would also be glad to give my experience thus far if it would help alleviate concern. I’ll let you know the biopsy results on the other nodes when I get word. Blessings to you all.

    #62261
    Catherine Poole
    Keymaster

    Any results yet from the SLNB?

    #62262
    goldfidler
    Participant

    Hello everyone. I appreciate all of your support. I wanted to let everyone know that I am going to have the surgery on Wednesday, September 11th. After the sentinel node biopsy, I have had swelling in my right leg. It has been manageable, but concerns me with getting the lymph node groin dissection. If i am getting swelling like this after the SNB, then i expect it to be the same or worse after the groin dissection. As I progress my treatment, I will post updates to share my experiences with others. The experiences of others has really helped me on this forum. Hopefully, I can give a little back to someone else. My thoughts are with Charissa right now as she recovers.

    Matt

    #62263
    Catherine Poole
    Keymaster

    Wishing you a speedy recovery Matt. Look foreword to hearing your update and it definitely will help others in this predicament.

    #62264
    Madeleine
    Participant

    I am another one facing a lymphadenectomy in the groin (I’ll use dissection from now on, that word is just too long). It looks like my symptoms are pretty mild so far: a melanoma on the calf 1.3 mm thick, no ulceration, and one positive sentinel node with the largest nest of metastasis 0.5 mm in size, in subcapsular and parenchyma. I have a feeling, Catherine, that you will say: why not a partial dissection? But the term is not in my surgeon’s vocabulary. Could you point me to some literature on partial dissection?

    #62265
    farang100
    Participant

    Madeleine wrote:

    I am another one facing a lymphadenectomy in the groin (I’ll use dissection from now on, that word is just too long). It looks like my symptoms are pretty mild so far: a melanoma on the calf 1.3 mm thick, no ulceration, and one positive sentinel node with the largest nest of metastasis 0.5 mm in size, in subcapsular and parenchyma. I have a feeling, Catherine, that you will say: why not a partial dissection? But the term is not in my surgeon’s vocabulary. Could you point me to some literature on partial dissection?

    The surgeon at the Melanoma of Institute of Australia told me that if they found melanoma only in the sentinel node then they would just take that out and adopt a wait and see policy. I think that it is part of the new trial they are doing comparing those that have full LND and those that opt for just taking out the one cancerous node. I am always in favour of less intervention but of course it is up to you.

    Interestingly enough I didn’t have a SNB but I did have an ultrasound lymphosinigraph which revealed a non specific 1.7mm thickening of the sentinel lymph node too small for a biopsy but suspicious. Subsequently I have had another ultrasound and that thickening has decreased to 1mm so if it is melanoma which is highly likely then it seems like it is shrinking. The reason I mention this is that even if you have a small amount of melanoma in one node I don’t think it necessarily means it will progress or if it does it might even take years so all in all it is quite tricky and difficult to make decisions on these things.

    #62266
    Madeleine
    Participant

    Thank you for your response, all the way from Australia (I am in the US). I think they are more conservative in Europe as well. As it happens I have access to medical journals and I spent the weekend trying to understand the ins and outs of dissection. I am not an MD so do not take the following as medical truth (to the extent that exists).

    If you have a positive Sentinel Node, the chance of having more positive non-Sentinel Nodes is only about 20%. That means that 80% of the people who have a dissection derive no benefit from it, because the one node that could have caused trouble was already out (and this is more true for small metastasis like mine). In that case, all you win is information that makes you sleep better at night. That’s not worth damaging my leg to me.

    However, if more positive cells are found at the dissection and taken out, there are a couple of benefits. First, the risk of getting more metastasis in the same region is substantially reduced (from like 18% to 5%).

    Second, even though the risk of distant metastasis eventually happening remains the same, it looks like it takes to longer to manifest itself. The big MSLT II study that came out in February of this year finds that people with a biopsy have a 71% chance of a ten-year disease free period, whereas those without a biopsy only have a 64% chance. These statistics include the people with a negative biopsy so I know my stats are not as good. Other research has also shown longer distant metastasis free periods for those who did an early dissection versus a delayed one (after a tumor was palpable). So it seems that early dissection does not stop but at least slows down distant metastasis, if it is going to happen anyway. This is a curious result, so I take it with a grain of salt.

    Third, there is a lower risk of complications when you do an early dissection than a delayed one.

    If there were a good way of getting rid of tumors once they develop, I think I would pass on the dissection because of the odds above. But we don’t live in that world. So, given all of the above, I have come to the conclusion that I should do it. That does not mean I don’t agree with you: this is a very hard call to make.

    #62267
    goldfidler
    Participant

    Hi Madeleine,

    First of all, I love your name. My daughter’s name is Madelyn. I don’t follow this discussion board every day but like to check in from time to time to see if I can help others. This forum has provided me with so much support and guidance that I cannot be thankful enough. If I can give a little back to others, I see that help as a my way of paying back.

    I am Stage IIIC, diagnosed in June 2013, and NED since my surgery in Sept 2013. You can search my other posts on this site for my full background and history. I went through the exact thought process as you are right now. I went through the research phase too, as this is what I do with everything. With my SNB, I had 3 positive of 5 nodes removed. I did the dissection and had 8 more removed, with zero positive. So technically, I did not need to do the dissection. However, knowing what I know now and what I have learned since that day in Sept 2013, I would do the same exact thing again. Guaranteed……and here is why.

    I think you are making the right decision for a couple reasons:

    1. You have identified an evil poison that is/was living inside your body. Get it out at all costs and be sure it is all out. If you spend enough time on this site, you will quickly learn the repercussions of what a recurrence can mean.

    2. If you have one positive node, it is the next logical step to remove the other nodes to be sure that it has not spread to the surrounding nodes.

    3. While the lymphadenectomy is more invasive than the SNB, I did not find the groin dissection to be that much more invasive than the SNB. Recovery will be about the same. And it is a small price to pay in order to gain peace of mind.

    4. MOST IMPORTANT – Do not underestimate the value of peace of mind. This disease is as much mental as physical. Your mind can do odd things to you. I can only speak for myself but have seen similar stories from others. I have never felt sick, weak, or tired from Melanoma. Never, not once. However, this evil will kill you if you give it a chance. By completely removing it and having the knowledge that you have done everything you can do is a very comforting thought when you are lying in bed at 2am and cannot sleep. It makes you feel better when you hug your friends and family. It makes you happy when you are enjoying a sunset with a loved one.

    Please feel free to reach out and use this forum. I found immense strength, wisdom, and support from the people here. And we are here for you. To help, when needed. To provide advice, when asked. And to just listen, always.

    Stay strong and fight. You are going to have to fight.

    My thoughts are with you…

    Matt

    #62268
    Catherine Poole
    Keymaster

    The results aren’t in yet for the study about whether a full node dissection is needed, but my opinion based on what I’ve seen so far is less conservative. I feel if there is one positive node and it has a micro-met, than a full dissection is overkill. I think a sampling from the nodes is suffice. There will be lymphedema, even with this small amount of removal. You are correct that there is the chance the melanoma went through the blood stream and bypassed the nodes too. So it is something to be discussed. In Canada and other global locations, they follow with ultrasound. Palpation is also a follow up. I do wish the study would come to conclusion so we would know which is the absolute, but medicine isn’t always like that! (I guess I would also base it on the pathology from the original lesion, mitotic value, depth, if it were nodular, etc.

    #62269
    farang100
    Participant

    I believe there is nearly always melanoma in the bloodstream and that is why it is such a tricky disease.

    I think this can be confirmed by doing a circulating tumour cells test.

    Stem cancer cells can hide in the bloodstream and appear at anytime even 10 or 20 years after your original diagnosis and that is why even people with in situ melanoma or stage 1 which have low rates of spread sometimes end up progressing.

    Melanoma is a systemic disease so cutting things out may only necessarily get you so far. Unless the underlying immune response is fixed to rid the body of the cancer cells surgery often just buys you time until the disease spreads somewhere else.

    I don’t like the idea of cutting anything out other than the primary tumour and especially the lymph nodes as they are your bodys filtering system and that seems like it is counter intuitive.

    Of course my opinion is not that of most doctors so please feel free to ignore me but in my situation I decided to do everything I can to boost my own immune system to cope with the disease and use surgery as an absolute last resort.

    I well understand the mental aspect is probably the most damaging because if you feel fit and good as many of us do it is hard to believe we even need these treatments.

    Good luck with your decision.

    #62270
    Madeleine
    Participant

    Dear Catherine:

    I think you are probably right and that the dissection is overkill. But without more of a handle on partial dissection (like where do you draw the line?), I can’t move on it. I hope for the people after me that they will have the benefit of the current studies, but in the meantime I will have to play the hand that I am being dealt. My mitosis rate was 9/mm2 which apparently is high. That explains why I got to metastasis so rapidly and makes me feel better about doing the dissection.

    And for my Australian friend: my immune system is already compromised due to my meds to fight rheumatoid arthritis, so that option is going to work better for you than for me. I want to try to reduce my meds to give my immune system a boost but that’s going to be a long shot.

    M.

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