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Problems after RPLND

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  • Problems after RPLND

    Hi everyone,

    I'm writing to see if anyone has had similar symptoms. Since my PC-RPLND, I have had no sweating, goosebumps, or vasodilation of the left leg. There may be a few patches of skin that sweat, but the foot is basically always warm no matter what the other leg is doing. I also have retrograde ejaculation. It's been 6 months since surgery. There is one case report in the literature that I am able to find that is similar to my case. My surgeon says he's seen it, and that it's not prognostic of recovery of antegrade ejaculation, but I doubt that since it's clear that the left sided sympathetic nerves are damaged. He says he spared them, but this fairly severe autonomic dysfunction. Has anyone seen this before? Did it resolve?

    Thank you

  • #2
    I had RPLND surgery sevral years ago and i have retrograde. Every once in a bluemoon during intercourse i will have a very small amount. The feeling is basically the same, just no mess to clean up.
    As for the leg and foot issue its possible that you have nerve damage also. Best thing to do is have a nerve conductive test done. Im no expert just my 2 cents
    Jan 2012- U/S mass in Left testicle
    Feb 2012- I/O performed to remove cancer
    Mar 1,2012- pathology pure seminoma
    Mar 7, 2012 PET SCAN stage IIa
    April 2012 Mayo clinic carbolite.
    May 2012 carbolite failed, started BEP x3
    August 7th 2012- BEP complete
    April 2013 CT/PET show relapse
    May 2013 RPLND
    Aug 2013 Relapse again Started VIeP x2
    Oct 2013 HDC AUTOLOGOUS
    Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
    Feb 2014 confirmed false positive all clear FINALLY !
    Jan 2015 1 year cancer free Pet/CT scan
    Jan 2016 2 years cancer free "Pet/CT scan
    Jan 2017 3 years cancer free "Pet/CT scan
    Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

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    • #3
      I'm 6.5 years out from my PC-RPLND and am still 100% 'dry'. I haven't had the strange foot symptoms that you had, but some of that can be from chemotherapy also. I had EPx4, and still can't really feel my left foot. I have poorer circulation in my left leg than my right, which probably explains why I only have about 25% feel in my left foot, but usually 50-75% in my right. The chemo probably stuck around for longer in my left leg due to poorer circulation, and did more nerve damage.
      Young Adult Cancer Survivorship by Steve Pake
      April is Testicular Cancer Awareness Month!
      www.stevepake.com
      Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
      My Survivorship Thread | All of my Blogs
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      ONTACT ME ANYTIME!

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      • #4
        ugh! So sorry.
        Pretty certain my son is retrograde, his right nerve could not be spared. He is 7 months post chemo RPLND, and also is having hormonal issues.
        I have seen a few others talk about nerve pain in leg post RPLND recently. I know one is TC MOM'S son. Do a search of her posts if she does not chime in.
        Son Grant
        dx 12/21/16 at age 17

        BEP x3
        Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
        2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
        Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

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        • #5
          I don't have any pain in the leg, just autonomic dysfunction. The sympathetic nerves were spared but the leg doesn't sweat and it's always warm. My concern is that sympathetic nerves perform a variety of functions, including sweating, vasoconstriction and antegrade ejaculation. I can't find anyone else who has the warm leg, no sweating problem. I'd be interested to know if anyone else had that symptom, and if so, did their retrograde ejaculation resolve.

          It's also possible that people just don't notice the sweating so much or talk about it since it's a much less severe problem than retrograde ejaculation for most men.

          Thanks

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          • #6
            Oh also, I'm not sure a nerve conduction study would help. I have very little sensory deficit from chemotherapy, thankfully, and no motor problem. I'm not sure the autonomic nerves are tested during nerve conduction studies but I could be wrong.

            In any case, the test wouldn't mean anything to me since there would be no action to take based on the results.

            But again, thank you everyone for chipping in your thoughts.

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            • #7
              Hi all. Iím not sure if this is the right place to post or where to post. My husband today just finished his last treatment. He had stage 3 seminoma testicular cancer. Just completed BEP X 3. The doctor would like him to go for his ct & pet scan next week to check how everything responded to treatment. Is this mandatory or donít they normally wait about 3 weeks to check everything? We are nervous that theyíre going to tell us we need to do the rplnd now.

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              • #8
                Jackmandy,
                It varies by doctor.I heard Dr Einhorn actually prefers aCT during cycle 3. Post back with the results & we can probably help with any decisions that might be needed.

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

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                • #9
                  Justquestions,
                  I actually don't think I've *ever* noticed my leg sweating, but the warm ness sure is a curiosity....

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

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                  • #10
                    Thank you for your response. They want him to get the ct scan before Tuesday of next week so absolutely will post back with reports!

                    Talk soon!

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                    • #11
                      I was retro for ~ 3months, my guess due to inflammation and associated chylous during that time. As for the other symptoms, I front left pocket is mostly numb, used to be completely, but I have recovered some feeling. When I am hot, I have an area at bottom of back pocket that sweats alot. In general my sensation and feeling on the left foot is not as great, more prone to falling asleep and pins and needles, getting cold in winter.

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