Home Forums Newly Diagnosed Stage III/IV Updated to IIIa

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  • #22279
    klp5005
    Participant

    I originally posted about my diagnosis in the I/II forum, and how I was mulling over the decision whether or not to do a SNB during WLE. All of the help and responses I got on here helped me to make the decision to do it, which a surgeon has now called ‘the best decision of my life’. So, thanks to Catherine and everyone else who advocated for it. If you’re on the fence about SNB – DO IT. The incision is in a slightly awkward place and healing slower than my other two, my thigh is a little numb, but overall not bad at all considering it’s potential benefits.

    To recap, I had 2 WLE’s and SNB on 11/25 to remove a .8mm melanoma on my left calf and .6mm melanoma on my back. Both had clear margins and are now healed up and looking good. I have no residual swelling and seem to have escaped the lymphedema beast for now.

    To the shock of not only myself but also my surgeon (I’m now a record-holder for his 20 years of practicing), I fell into the 5% of people with my pathology that have nodal involvement. According to the pathology, only one inguinal sentinel node was removed and it had a single focused micro-met (.2mm). I was promptly poked prodded and scanned via PET, MRI, CT, XRay, ultrasound, palpation, etc. and fortunately every one of the tests came back clean (except for a pesky thyroid nodule that’s schedule for an ultrasound next month. I swear all these tests seem to open a can of worms.)

    So, yet again, I’m at a cross-roads. CLND or watch and wait? Being 29 and upgraded to stage III cancer was hard to come to grips with (and there are definitely days when I lose my grip!) Mentally I’m at peace with watch and wait, knowing that a very small amout was found hopefully very early and there’s a majority chance that I’m already cancer free (YAY!). Also, with knowing that the CLND will definitely lead to lymphedema, when there’s minimal chance of something still existing in there. I’ve been told that the combo of PET and ultrasound can find new metastases as small as 4mm, so with vigilant scanning even if it does come back it will be found promptly.

    Through all of this I’ve found a lot of peace through research and second (and third and fourth) opinions. I’m located in Atlanta, so I’ve had access to amazing medical knowledge through both Northside hospital and Emory university. My original surgeon at Northside has recommended to watch and wait, and scheduled follow-up ultrasound and PET scans for April and every 6 months thereafter. A consult I had at Emory resulted in a recommendation to do the CLND (sidenote – Dr Delman at Emory is pioneering a CLND procedure that is videoscopic – only two small dime sized ‘ports’ on the top of the thigh – no graphic incision. If I go for CLND, it will definitely be with him and this procedure. Recovery is apparently quicker with less chance of complications.)

    Again, after hours spent on here, and reading as many medical journals as I can (and wishing they would just hurry up and publish something from MSLT-II!) I believe I’m going with watch and wait (even though I hate that phrase – I prefer to call it ‘watch and live my life’). But considering y’all’s thoughts helped me make the first difficult decision, I iust wanted to update, say THANK YOU and see if anyone had any more sage advice or similar situation that they’d like to share :)

    Thanks all!

    -Kara

    #65964
    Catherine Poole
    Keymaster

    Kara,

    Sorry to hear you were upgraded to stage III but good news about it being just one micromet. I agree with you that watching and waiting is actually an aggressive approach and makes sense. True, I’d like to also see some scientific backing for the best approach but it isn’t there. When I was diagnosed with my melanoma a .76, there was no sentinel node biopsy and so I was watched carefully over the years. It makes sense to take good care of yourself too, eat, sleep and exercise well! All three proven to make you healthier. Keep in touch and have a happy holiday.

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