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RPLND after 10 years of all clear

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  • #16
    Thanks for your replies. The tumours have all had a neuroendocrine differentiation, which the surgeon said was essentially a mutation of my testicular cancer. This has been the case in all my recent operations over the last 4 years. Of course when they perform the surgery then do the best they can but anything left behind on a microscopic level is never going to be detected until it 'takes root' so to speak.

    The Royal Marsden has also confirmed that this, from their experience, will not respond to chemotherapy. Plus as I had preventative radiotherapy 3 years ago in the area it keeps coming back, its felt that its not worth doing it again incase I need further surgery as of course it can mess around with your insides somewhat.

    I'm guessing treatment has got to generally be based around what the primary tumour is, rather than its mutation. Otherwise presumably interferon might help?

    Regarding being 'in the clear' I would love to be. But of course no oncologist will ever tell me that - indeed I have been told to assume that there is a good chance that it will return. Hence the increase CT scan intervals so they can act quickly with surgery going forward.

    I'd love some form of magic preventative medication!


    • #17
      Consider reaching out to Dr Einhorn if you have not already done so. This sounds like a case that really needs the best minds working on it.

      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP