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  • #21080
    Bunmom
    Participant

    I met with the surgeon today. (WLE = clean, SLN = 0.1mm micromets, Stage 3a). Two oncologists recommend CALND.

    Surgeon says CALND is NOT “curative”, but rather a tool for staging purposes. He said the ONLY reason for this surgery is to determine if my other nodes have mets. If not, it means little because the melanoma could have slipped through the lymph and is waiting to colonize somewhere in my body. If I do have more affected lymph nodes, it would increase my stage and I could consider a clinical trial–and I’d probably have metastatic disease waiting to happen.

    He told me that either way (surgery or no), my chances of survival are exactly the same. I’m not sure how this could be. While the treatments for melanoma aren’t many, we do have SOME weapons in the arsenal.

    I feel really down at this news and am unsure how to proceed.

    Any advice or insight is greatly appreciated.

    #59465
    TreeFrog
    Participant

    Hi Bunmom,

    As I understand it, what the surgeon says is correct – CLND is performed for staging purposes. Theoretically it could be curative in some specific cases (one can imagine how that might be), but statistics don’t offer any hard evidence that this is true in general. It’s certainly true that people have progressed with further disease after “clean” CLNDs, and also true that people whose CLNDs turned up more “dirty” nodes did not progress and remained healthy.

    Remember – either way (with CLND or not), you have a reasonable chance of remaining disease free.

    If the CLND showed more disease, perhaps this would make you eligible for certain drug trials (others with more knowledge on this, please chime in). For myself, that’s the only advantage I see in it. The disadvantage, of course, is the CLND itself.

    It’s the nature of medicine and of many doctors to be proactive and “do what can be done.” They don’t want to leave any stone unturned, even if just for information’s sake. It’s natural. But if you don’t see (or feel) an advantage in this surgery, that’s completely legitimate, too. In your shoes, I would pick watch and wait – but I’m not advising you! – just letting you know that there are lots of approaches out there and none is 100% right or 100% wrong.

    Whichever you choose, remember the remarkable healing power of your body. Melanoma is smart, but many people’s bodies are smarter. Do what you feel you need to.

    Best wishes,

    ~Wendy

    Stage Ia .47mm removed 2010

    #59466
    Catherine Poole
    Keymaster

    I’ve forgotten what your original Breslow level was, but the 3A designation with just one micromet is a very positive thing! Yes, it is true that the SLNb and CLNB are not necessarily curative if the melanoma cells went into the blood stream. But it is also likely that your lymph system recognized this one and caught it. And now it is gone. I’m more of the opinion of partial node dissections than complete or watch and wait. Unfortunately, there are just no guarantees with anything in medicine (or life) but you have an excellent prognosis as far as I can tell and there is a lot you can do to keep yourself healthy!

    #59467
    Linny
    Participant

    Catherine is right. You do have an excellent prognosis.

    Another thing to keep in mind is that you are not a statistic, you are an individual. And regarding any studies you’ve read, check the dates on when they were done. Some of the older ones tend to be abysmal. I tend to pay more attention to studies published after 2005. Statistics are constantly in flux. Because of recent treatment advances the statistics that are being gathered for melanoma patients now will show even better numbers than those gathered in the mid 2000’s.

    Regardless of numbers, there are more people who do not get lymphedema as a result of an axillary LND than those who do. There also is surgery that can be done to correct the condition. However, it’s a relatively new procedure and doesn’t always work as intended. But — there are professionals doing research on how to surgically treat this condition.

    You can always get a second opinion at another melanoma center. Some doctors are better at dealing with patients with “frayed melanoma nerves” than others are. I wound up choosing my onc based on how laid back he was. Others have found him too laid back but I preferred someone who could calm my nerves.

    If you opt for the surgery, seek out a breast cancer support group and go talk to these people. Many of them will have had axillary dissections and can fill you in on their first hand experiences. Two of the most helpful people for me were breast cancer survivors.

    #59468
    stang
    Participant

    I have been away from this forum for awhile and just now noticed your post. Your problem sounds very similar to what I went through.

    I had a back mole that was diagnosed as Melanoma. Of course, that changed my life!

    Before surgery I wanted to get to the best people I could find before moving forward. Luckily I live 4 hours from NYC so I went to Memorial Sloan Kettering. My surgical oncologist there did the sentinel lymph node surgery and found a small amount in one lymph node, (under my right arm). Now I was really scared!

    I was now officially 3a and confused. I was told that they had a very good survival rate with my class of Melanoma and that I shouldn’t worry about it. (easier said than done but over time I did stop worrying about it).

    My choice was either watch and wait with frequent checkups and pet scans or remove more lymph nodes from under the arm. They thought there would be about a 25% chance of finding more cancer and it was my call to make. I would not cure any cancer but would give everyone a better reading of where zi stood.

    My wife and I both felt that I should go for it and have the surgery. They removed 19 more nodes and all were clean. (By that time I was convinced in my mind that they would be clean). My largest problem was the discomfort of the drain tubes but that was not too big a deal. My wife helped with them because I couldn’t properly reach them to clean them out. They were taken out on schedule and the only problem I now have is that a few areas of my skin under the arm has lost some feeling. In other words I can feel an itch there but when I scratch it I barely feel it. Very minor, just a slight inconvenience.

    My oncologist says that if any cancer reoccurs it will come back as a tumor and will have to be dealt with so now I am on the watch and wait thing and go back for check ups 3-4 times a year and have pet scans once or twice a year. (I was originally told scans 3-4 times a year but that has been cut back).

    My surgeries were in August and Oct 2011.

    Aside from getting my mind in line, I did change my diet some to cut back on things you read about that may contribute to cancer but other than that I am pretty much as I was. Maybe some would say I am denying things but my attitude is very positive. I honestly feel that this will not come back!

    The start of all this is very scary. 3a is not something to ignore. You have a potentially serious problem but if dealt with by the best people you can find and if you can get your mind to accept that it will be OK, you will have an easier time with it.

    Good luck in your decision. I am not sorry I made mine.

    Stan

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