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In RPLND hell: chylous ascites, not nerve-sparing?

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  • In RPLND hell: chylous ascites, not nerve-sparing?

    It's been 6 weeks since my RPLND surgery. 57 lymph nodes were removed, 5 containing teratomas.

    Recovery has been hellish. I have chylous ascites though I'm trying to stick to a 0 fat diet. I had a procedure yesterday to try to fix it but if it worked, it hasn't worked yet.

    I hadn't heard from the surgeon whether the surgery was nerve-sparing, and was a bit afraid to ask. A nurse had told me the surgery went well, so I had hopes it was nerve-sparing.

    However, just now I found on the hospital portal that it was NOT nerve-sparing, due to damage from the 4 prior rounds of EP chemo.

    When an RPLND is NOT nerve-sparing does that mean that forward ejaculatory function will NOT return? Or is there still some chance that it will, just diminished chances because special care was not taken to identify the proper nerves?

    I'd had an option at another hospital of a unilateral RPLND, which I think would have spared ejaculatory function...


  • #2
    Sorry your having so much difficulty after rplnd. First off and please think of this with an open mind. Whats done is done and you cant change that so dont let it stew as unneeded stress doesnt help. Second, i was told that mine rplnd would try and spare nerves but it didnt happen so i like you am retro grade, been going on for over 5 years now. The feeling is the same just a little less intense. Everyone once in awhile certain postions i will have a little come out. Hang in there buddy your alive and on the mend.
    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
      Originally posted by anonyperson View Post
      When an RPLND is NOT nerve-sparing does that mean that forward ejaculatory function will NOT return? Or is there still some chance that it will, just diminished chances because special care was not taken to identify the proper nerves?
      Well,if those critical nerves were indeed severed, then yes, you will stay retro. It's not the end of the world if that is the case. I've been retro for over 40 years and it doesn't affect sex one bit. I even had one partner that found it a big plus. As eodtech said it's too late to second guess what might have happened if you'd done something different, none of us get out of this without some scars, but we get to live out our lives, which would not be possible without them.

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

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      • #4
        I didn't have a nerve-sparing RPLND (because I already had a vasectomy so there was no reason to worry about fertility) and ejaculation did return after a couple of months, although not as much before the operation. I've heard that even after a nerve-sparing RPLND some people are still retro, so I don't think it's a black and white situation.
        I/O Aug 04 (nonseminoma), bilateral RPLND Sep 04, Surveillance

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        • #5
          If I understand the technique correctly, in nerve sparing surgery they take extra steps to try to avoid cutting the nerves controlling ejaculation.That does not guarantee that they will not be cut. On the other hand, NOT taking those steps does not guarantee that they will be cut. Pretty sure if they ARE cut, you will be retro for the rest of your life. That said, it's too soon to tell, there have been quite a few in here that were retro for some time after surgery & had it return.

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

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          • #6
            I am starting to lose hope that function might return. I should probably ask the surgeon and his team! Some people do adjust to it; I think it might be harder for me to. I will have to seek out some kind of therapy or support group. I'd rather live with some hope and denial!

            jdbob's story gave me some hope.

            But the more I study the issue: there's nerve sparing, and also modified template, which involved removing all lymph nodes on the side of the original tumor, but sparing below a certain artery the lymph nodes on the other side. That way they won't cut the nerve. This still has something like a 60% chance of preserving function. The first doctor I consulted I think would have done either unilateral or a modified template surgery.

            My guess is that jdbob's surgery while not nerve sparing still had a modified template?

            The surgeon I did have is very thorough about removing as many lymph nodes as possible in the interests of preventing future cancer. From the operation report, I think a modified template was NOT used. I don't know if in this situation function can return. I'm guessing a less than 3% chance? It's not healthy for me to obsess over it like this, but my body and mind are depressed and weakened in my post-chemo situation where I'm nutritionally deprived and suffering from RPLND.

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            • #7
              I had a full open bilateral RPLND by Dr Sheinfeld at MSKCC in June 2011, and he said my innards were so messed up and sticky (just from the EPx4) that he actually asked if I'd had cancer before, and been through other treatments! Nope! Just the EPx4. He did the nerve sparing procedure and insisted that he spared the nerve, but I've been 100% retro (totally and completely dry) ever since. I'm not sure exactly why, but it's possible to spare these nerves but have them not function anymore. Don't obsess over it. Like Dave mentioned, it hasn't slowed my wife and I down a bit, and we still enjoy sex just as much as we ever did. What's most important is that you're still here, and the unilateral or template or modified template RPLND surgeries also have higher rates of recurrence. There's definitely support and/or therapy available if you need it, however.
              Young Adult Cancer Survivorship by Steve Pake
              April is Testicular Cancer Awareness Month!
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              Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
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              • #8
                So sorry you have had a difficult time post RPNLD. How is your chylous ascites? My son also lost a nerve last May during his post chemo RPLND. I am concerned that you have not yet met with the surgeon to discuss the surgery. Give it some time you are still relatively close in from your surgery.
                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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