Home Forums Melanoma: Stage III Misdiagnosis?

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  • #21099
    Bunmom
    Participant

    I sought a 2nd opinion on the surgery for lymph node dissection, this time at a melanoma center where I had the oncology consult. The surgeon was surprised that a mole less than 1 mm deep would migrate to lymph nodes, and told me my sentinel node could possibly have nevus rather than melanoma. I’ve never heard of this! He requested the pathology slides and will have a melanoma pathologist view them and present them at this coming Monday’s tumor board meeting. So I won’t know for sure till Monday. :(

    He said that he is finding more and more nevus cells in lymph nodes, especially amongst people who have a lot of freckles and moles. He said it’s more common in those who have had congenital moles–that would be me AND my daughter. He told me it’s difficult to distinguish between melanoma and nevus in the lymph sometimes, and wants to verify it’s truly melanoma before scheduling surgery.

    I’m completely floored. I’ve never heard of this, never came across it in my readings online. If this ends up being a nevus…..my heart will not be able to contain the joy! However, he did warn me that it likely IS melanoma and that I should prepare for surgery.

    Has anyone else heard of this?

    #59578
    bubbasmomma
    Participant

    Yes! I have a post on this same thing somewhere on this board. I had my lymph nodes reviewed three times… that’s how sure my doctor was that I could have nevus cells… but I didn’t. :(

    #59579
    Linny
    Participant

    Wow. That’s pretty interesting. Your story perfectly demonstrates how important it is to seek out an oncologist who specializes in melanoma. I pray that you get good news on Monday.

    #59580
    Catherine Poole
    Keymaster

    AMEN! Please get second opinions at centers of excellence, much can be done by mailing slides. It is well worth the effort! It changed my diagnosis a lot and my peace of mind. let us know how it turns out. I have heard of nevus cells mimicking melanoma cells to the untrained eye.

    #59581
    Bunmom
    Participant

    I now see the need to be followed at a center of melanoma excellence. I did a ton of research and DID get a consult with a melanoma oncologist at a CoE, but was choosing to have my surgeries at a place much closer to where I live. BIG MISTAKE. I thought I “knew” what the CoE docs would tell me based on my readings and my (non-mel) oncologist. I was wrong!!

    IF this is a nevus and I didn’t make the long drive to the CoE, I would have had an axcillary lymph dissection and interferon for NOTHING. Wow.

    Funny/Interesting story: I’m still struggling with the LND surgery decision, but decided to just do it. As I went to pick up the phone to call my local surgeon to schedule, it rang. The CoE called and wanted me to meet their surgeon. I declined and told them I’d rather have the surgery closer to home. They actually INSISTED that I make an appointment with the surgeon and wouldn’t let it go. Reluctantly, I agreed. Now I know why, and I believe it’s from God.

    So while I hope and pray that the slide is nevus, chances are it’s melanoma and I’ll deal with it as best as I can with God’s help. But I will always warn people to have slides viewed by a MELANOMA PATHOLOGIST (which I didn’t even know existed!)

    #59582
    Linny
    Participant

    A surgeon experienced in melanoma is also your best bet because he/she deals with it on a daily basis. It’s “routine” for them and they know what they’re looking at and for so they’re less likely to miss something. :mrgreen:

    If you do need the surgery, you’re well armed with information on what to expect from it. Please keep us posted.

    #59583
    washoegal
    Participant

    That would be great news! But try not to get too excited right now, would hate too see you have a big let down. Praying for the happy dance!

    Mary

    #59584
    Bunmom
    Participant

    I’m fervently praying for a nevus, but am preparing for surgery just in case. It’s a difficult balancing act. I’m both excited and nervous for Monday, when (I hope) I’ll know for sure.

    In any event, as Linny and Catherine have mentioned, I now realize how very important it is for a melanoma pathologist to review slides. Even if mine ARE melanoma, someone else’s might not be! Having a melanoma pathologist review the slides may save someone from surgery, treatment and a lot of worry!

    #59585
    Bunmom
    Participant

    Update: The melanoma pathologist says the lesion in my sentinel lymph node looks like a nevus, but he’s suspicious as it was located inside the node (typical for melanoma and atypical for nevus) rather than outside (typical for nevus). He wants to look at my arm mole biopsy slides, but they’re out for BRAC testing. :( It might take another week!

    I’m still hopeful but am quite nervous. I’ve pretty much decided to have the lymph removal surgery if it’s melanoma, but have so many fears. One step at a time.

    Anyway, I’ve learned so much more than I thought I would by actually becoming a patient at the melanoma clinic rather than having them communicate with my local oncologist/dermatologist.

    #59586
    Linny
    Participant

    I’ve been thinking about you all week and wondering how things turned out.

    What is BRAC testing? Or, do you mean BRAF testing? BRAF testing would make sense since it would determine if you have that mutation. If you’re BRAF positive, you would be able to qualify for any trials where they’re testing Zelboraf with Stage III patients. That drug is not FDA approved for Stage III, but it is FDA approved for Stage IV.

    I don’t blame you for being nervous. Unfortunately there’s nothing more you can do but wait. I tend to equate waiting for medical test results with the saying — “how long a minute is, depends on which side of the bathroom door you’re on”. I hope that analogy brings a smile to your face. :)

    You’ll have your answer soon, and then you’ll be able to move on.

    #59587
    washoegal
    Participant

    Sorry you have more waiting. Did the pathologist actually go over the slides again? He/She didn’t just review the first report? This must be driving you crazy. Hope you can get some answers soon.

    Mary

    #59588
    Bunmom
    Participant

    Oops, I did mean BRAF testing!

    The original slides of mole and node were sent to a “general” pathology lab. The melanoma pathologist wants to see them. He has, in hand, the node slide. He says the lesion looks like a nevus but since it’s not outside the node but rather inside, it makes it suspicious for melanoma. To make sure, he wants to compare the morphology of the cells with my arm mole slides, which are out for testing. So we have to wait.

    I’m practicing patience and peacefulness!

    #59589
    Catherine Poole
    Keymaster

    This second pathologist I hope is one of the experts in dermatopathology. General pathologists don’t have the training usually to decipher these complicated things. I hope it all turns out for the best!

    #59590
    Anonymous
    Guest

    You know, Catherine keeps coming back to this most excellent basic point.

    We’ve no problem hunting down a center of excellence and oncologist who specializes in melanoma so we should also make every effort to do the same for our pathologists and dermatologists. Makes huge sense.

    A best practice IMO.

    Jeff

    #59591
    Catherine Poole
    Keymaster

    thanks Jeff, and slides are simple to ship for another opinion. Some of the top labs would include: UCLA, Hopkins, PENN, Mass General, Sloan Kettering, and Dr. Mihm who does this privately, http://www.drmihm.com

    It can make a world of difference to get the slides reviewed by an expert.

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