Home Forums Melanoma Diagnosis: Stage IV Looking Back (I know that’s against the Rules)!

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  • #22089
    msue5
    Participant

    I am waiting for PET Scan results so I tend to think about Melanoma more. I’m hoping my looking back will give someone else the advantage to really think before you act. I wish I could go back and not have had My CLND to Lt groin. You can look back at my posts to see I had a series of bad outcomes that continue to this day. Still recovering from latest Abd surgery where my 2nd incisional hernia was repaired and they were going to try to move my Rectus muscle back to where it belonged but it was encased in scar tissue and could not be moved. That means I will have Abd spasms the rest of my life. They affect everything I do and can’t do anymore. Try grocery shopping with feeling like you have a boulder in your abdomen. I’m not trying to scare anyone but I wish Ultrasound had been done to monitor my nodes. Even with a clear PET scan 6 wks prior my node could be palpated and turned out to have extra capsular extension. Surely Ultrasound would have picked this up much earlier and I would have only had the 1 removed. Most patients have no more positive nodes. This node was found 9 months after a neg SLNB. Wrong Sentinal node? To me Ultrasound just makes more sense. Also have chronic lt groin and thigh pain since CLND that Neurontin has helped a lot. I know there was a clinical trial regarding this but never heard results.

    Mary Sue

    #64973
    Catherine Poole
    Keymaster

    I agree with you. The results aren’t in yet, but I think there may be needless full node dissections when partial ones would suffice. Certainly when one node is involved and it is microscopic, but we tend to get crazy about this disease because it misbehaves and usually do the most radical thing. Like the wide excisions are wider than necessary etc. But I am hoping that study will show us the way!

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