Home Forums All Categories Muscle Invasive Bladder Cancer 8 month post neobladder follow up

  • 8 month post neobladder follow up

    Posted by mmc on June 17, 2009 at 11:28 pm

    So I had my follow up yesterday.

    CT: All clear except for two minor hernias. I’m not worried about them and we’ll deal with it later if we have to.

    Chest Xray: All clear.

    cytology: Apparently my local hospital forgot to fax that one or it got misplaced. They refaxed it but I just sent an email to my uro to ask him to let me know what it said.

    Flow test/residual: I had no idea what to expect for a “flow test”. I saw a few others on the site mention getting them so I emailed my uro to let him know I wanted one on this appointment. For those who have never done one, there is a big funnel type thing with about a 10″ diameter at the top and 4″ diameter at the bottom. Some sort of spinning thing is in the bottom and then a large tin cup that is below that. A computer is on the wall and hooked up to the spinny thing in the bottom of the funnel. You just go in the funnel and it takes measurements of flow rate and volume and prints out a strip that you take out of the bathroom and give to the nurse.

    I wanted the test because my flow seems reduced and I’m getting some occasional day leakage.

    Uro says flow is not great but OK. What shocked him was when we did the residual check. I had gone 375cc in the flow machine, finished in the toilet (probably another 25-35cc) and then had a residual of 350cc in the neobladder.

    So….for now, he wants me to try to stick to a tighter schedule of emptying and go more often if needed in order to get it fully drained. We follow up in two weeks to see if I’m draining better. If not, I get to learn out to self cath (OH JOY!). I was very surprised by that as his response back when I had surgery to my question about self cathing was “Why would you want to do that?”. He said, usually it isn’t something that is required but sometimes winds up happening. I’m hoping I can train the neo to behave and drain completely. I just get worn our after a few minutes of trying to empty so that’s why I’m hopeful that going more frequently for a few minutes or so at a time will do it.

    We are also going to do a cysto in 2 weeks to see if there is anything blocking the way.

    So, it was a good news, bad news appointment. The other bad news was that the guy who does “the shot” training wasn’t available that day so I’ll learn about that next appointment as well.

    Not too worried about having to self cath if it comes to it. The “ouchy” part was always the prostatic sphincter and since that has been removed, it shouldn’t hurt. I don’t like the idea of the increased risk of UTIs so I’m going to work hard on doing a better job of emptying.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
    replied 15 years, 8 months ago 3 Members · 8 Replies
  • 8 Replies
  • 's avatar

    Guest
    June 18, 2009 at 2:49 am

    Holly,

    From what I understand from reading here, the hypercontinence experienced by a number of women with a neo is a whole different set of issues and is related to muscles instead of scar blocks in men.

    However, I do know what you mean by bathroom aerobics. I’ve done those myself. When I am doing that it’s time to see that laser go to work.

  • 's avatar

    Guest
    June 18, 2009 at 2:43 am

    You’ll like the laser cysto Mike. You get to watch him burning away on a screen. Takes about 5 minutes.

    That constant squeezing and pushing is another sign of a block.

    Webs, I know what you mean about lying down. I know after work when I am stretching and at night, everything clears up pretty well. I have very good flow the 2 times I get up at night, usually with good pressure a thick stream and solid volume. It is almost like before all this happened.

  • 's avatar

    Guest
    June 18, 2009 at 1:42 am

    Hi all,

    I too have tried everything to fully empty…I call it my “bathroom aerobics” now:unsure: It helps but I still had to start selfcathing too.

    Glad to hear mostly good news for you! Holly

  • mmc's avatar

    mmc

    Member
    June 18, 2009 at 1:13 am

    Thanks for the tips. I also try leaning a bit to one side and then to other and that helps. I get kind of worn out trying to go so I’m thinking go, wait and hour and go again but also to do activity in the hour. Then I can wait 4 hours, rinse and repeat.

    :)

    Thanks for the tips. I’m kind of hoping he finds a little blockage of some sort that can be removed. Will know in two weeks.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • webs's avatar

    webs

    Member
    June 17, 2009 at 11:46 pm

    I agree Lee.

    I forgot one other thing to try. After you empty if the above mentioned antics don’t work. Lie down for 5 min. then get up and go. Sometimes it acts like a restart button.

    Webs

  • 's avatar

    Guest
    June 17, 2009 at 11:40 pm

    Webs,

    I find something very similar. I think it has to do with the neo kind of folding up or something.

    By the way, I get the flow test every visit to the uro. It is the first thing that happens before I even walk in the exam room

  • 's avatar

    Guest
    June 17, 2009 at 11:38 pm

    Love those flow tests Mike. As you can see they are very useful. I wouldn’t be surprised if they find some narrowing, possibly due to scar tissue. I think I am going to have to have my Uro(know as Obi Wan Kenobe) get his laser out one more time to clear a little debris. :)

    Had to use a cath for a couple of days before being removed after my last treatment in Jan. Flow test a few weeks later showed a residual of about 10 which is essentially empty they said and a total flow of about 450 if I remember correctly. It was a good day.

  • webs's avatar

    webs

    Member
    June 17, 2009 at 11:36 pm

    Never heard of the flow test before. Wonder if they just don’t offer it to women. Oh well I already know mine is not great

    Here’s hoping that they find some easy fix for you. Cathing would be o fun for you.

    As for emptying I have one piece of advice you might not of heard before, but it helps me. After I empty I will get up walk upstairs, or bend over a few times and walk around in circles etc… After about 5 min. I empty again. I am always surprised at how much comes out just 5 min. later. Of course this is not the optimal solution at work as people look at you funny.:woohoo: :silly: ;)

    Good luck

    Webs:kiss:

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