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Never Again An Abdominal Cut

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  • #16
    I'm sorry to hear of the difficulty you're facing. I also found it difficult to work with clinicians who are rigorously inflexible around "evidence-based" medicine. I don't know how many times I had to look my oncologist in the eye and ask "What if a CT isn't an option?" It took nine months before she heard what I was saying, so I switched to one who was more accomodating. I feel lucky I was able to find one.

    I thought the article you posted by Giguere and colleagues was very interesting. I'm looking forward to reading beyond the abstract. (fortunately I work at a medical school, so I should be able to get the whole article).

    I hope you can find someone willing to work with you - I only wish I was well enough connected to suggest a specific surgeon for you.

    It is not unheard of to treat testicular cancer without orchidectomy (though this is usually for men with one remaining testicle, or who have GCT in both testicles - and often still involves surgery using an inguinal approach). Have you found anyone willing to talk with you about what treating the cancer with chemo alone, or frequent surveillance alone, might entail?

    Again, hope you find what you're looking for, and I'm sorry that the journey has been so arduous.
    Painless lump 5/18/2017
    Orchidectomy June 2017 (4.5cm, rete testis involvement)
    Chemo Summer 2017 (2x7AUC carboplatin)
    No evidence of relapse since, but plenty of anxiety about it.

    I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

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    • #17
      Rats, our university doesn't have access to JU back to 1988.
      I looked at a few articles that cite Giguere et al., namely Niell et al. 2007 ( https://www.sciencedirect.com/scienc...94014307000122 ), and Schlatter et al. 2003 ( https://www.sciencedirect.com/scienc...94014307000109 ). It sounds like when they go in through the scrotum, they prefer to remove not only the testis, but also that whole side of the scrotum. Is that a possibility for you?

      Also, you may find the following article helpful in making your case: ( https://www.ncbi.nlm.nih.gov/pubmed/8795414 ). Unfortunately, our library doesn't have access back to 1196 for BrJU, so I can't pull the whole thing for you.

      Again, best of luck to you.
      Painless lump 5/18/2017
      Orchidectomy June 2017 (4.5cm, rete testis involvement)
      Chemo Summer 2017 (2x7AUC carboplatin)
      No evidence of relapse since, but plenty of anxiety about it.

      I'm also an epidemiologist, and a professor at a medical school (with NO training in oncology), oh, and gay, too.

      Comment


      • #18
        Originally posted by billandtuna View Post
        It is not unheard of to treat testicular cancer without orchidectomy (though this is usually for men with one remaining testicle, or who have GCT in both testicles - and often still involves surgery using an inguinal approach)..
        Well, I've never heard of it? This is testicular cancer, a disease which has proven treatments that cure well into the high 90% of patients, but still guys die, we just got word of one in the last couple of days on this forum.Why anybody with a life threatening illness would risk their lives playing around with unproven protocols when the prognosis is so good with proven protocols is beyond my imagination.

        I could be wrong, but my understanding is that chemo isn't very successful at getting into the testicle. I wouldn't even consider this without a LOT of evidence it works as well as traditional treatments.

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

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        • #19
          Hey, thanks to both of you for the reply. I'm not opposed to the orchidectomy , just to the I/O approach. I want the testicle removed via the scrotum. I've had many abdominal incisions in my life some decades old and they all still hurt every day.

          I had peritonitis from a burst appendix when I was young. The doctor failed to dx it as a burst appendix and left me in the hospital for three days as the infection spread. He thought it was a kidney infection. So, the strictures in my abdomen are very bad.

          I get the impression the urologists are of the opinion that I'll come around to the I/O versus scrotal removal and they are just waiting me out. But my primary is very good about getting back to me, so we'll see.

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          • #20
            Well,is it better to have incision pain from a life-saving procedure or to die from TC? I've had that choice a few times in my life& always chose to live.Your choice, I guess. Sorry if that seems a bit harsh.

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

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