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Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer Percutaneous Nephrostomy Tube?

Viewing 11 posts - 1 through 11 (of 11 total)
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  • #8515
    KiltmakerRon
    Participant

    Has anyone had a Percutaneous Nephrostomy Tube? Is it done under general anaesthetic? Does CCAC come to help with care afterward?

    I had just had my second BCG treatment, when pain in my back revealed that my right kidney wasn’t draining. The surgeon went in to try to insert a stent, but was not ably to find the ureter because of scar tissue, and growths of two other (so far) unidentified types of tissue that has grown since my previous scope.

    Now the BCG treatments are on hold, and in 2 days, I go to a different hospital to have this tube inserted, and then (a day? a week?) afterward, my regular surgeon will go back in & try to meet up with that tube to complete the stent procedure.

    This is supposed to be temporary, but it’s making me feel sick to my stomach. I’ve said right from the beginning that I wouldn’t be able to bear having tubes or bags coming out of me. I admire those who can, but this feels like it will be beyond me. At first the surgeon said it would only be for a couple of weeks … now he’s saying “weeks to months”.

    If anyone has had this, how bad is it?

    #21746
    KiltmakerRon
    Participant

    Four hours to go before this is done. I’m alternating between terrified & horrified … and not ONE reply. Thanks!

    #21747
    Saldcorn
    Participant

    I’m so sorry that you didn’t get any replies. I didn’t answer because I had never heard of this before. I guess I thought that someone would have had the experience and would have discussed it with you. But, I guess by now you’ve had the procedure. I hope it went well.

    I had an RC with neo bladder last September. As a result, I had a catheter and bag for 3 to 4 weeks and a catheter in the more obvious location for 6 weeks. It was annoying, unsettling, frustrating, and at times totally gross. So, I totally empathise with what you’re dealing with. I did finally get more or less used to it. That was after I stopped resenting it, and let gratitude for at least having the opportunity to need one kick in. But, I guess this is the nature of the beast. Ups and downs followed by more ups and downs. Happy to report that post-equipment, it’s been pretty steadily an ‘up’.
    Please don’t hesitate to post or pm me if you need any moral support or encouragement. Although sometimes hard to believe, this too shall pass.

    Sue

    #21750
    KiltmakerRon
    Participant

    Thanks, Sue.

    #21751
    Jack Moon
    Keymaster

    Hi Ron

    Sorry I have no experience in this procedure. I do know 1 person who has a stent to drain 1 kidney but he is in England on vacation and does not return until middle of July. So sorry you are having to go through this difficult time. I will send out some emails to survivors to see if I can find someone who has experience with the stent. Wishing you all the best my friend.
    Thanks Sue for offering to assist Ron.
    Jack

    #21752
    KiltmakerRon
    Participant

    Thanks, Jack.

    #21753
    Tom M
    Participant

    Hi Ron,

    I didn’t see your post until after (presumably) you had your procedure. Hopefully by now all the fear is gone.

    In my case, I had stents put into my left kidney after having had a radical cystectomy so the process was a little different in that the stent was run through my stoma and allowed to drain into my urine collection bag. In fact, this had to repeated a number of times because the stent kept coming out.

    It sounds like your situation is different in that you have had blockage and scar tissue preventing the insertion of a stent and you may have had more of a full blown surgery under a general anesthetic. I would be curious to know. Usually a stent is placed in the ureter with a local anesthetic and a relaxation med. it can temporarily be attached to the skin and drain to an external bag or actually be inserted into the bladder and drain through the urethra.

    None of it is exactly pleasant but neither is it a major hurdle. Hopefully, once they get the drainage working properly, you’ll be back on your BCG course and another step closer to getting rid of the nasty cells.

    One piece of advice: because your situation is a bit unique, make sure you ask all the questions you can to your doctor. He is the one to outline exactly what is happening, what to expect and what ongoing treatments he recommends. We’re here to give you support and encouragement but the doctor is the ‘go to’ guy for answers to specific treatments. Please keep in touch.

    With support,

    Tom

    #21758
    Saldcorn
    Participant

    Hi Ron,
    Just checking in. I hope it went well and that you’re feeling a little better about things now.
    All best,
    Sue

    #21759
    KiltmakerRon
    Participant

    Hi Tom, & Thanks Sue for checking in.

    As it turned our, the tube did NOT go in. The surgical team made three attempts, but were unsuccessful. This procedure was set up after the attempt to insert a stent had also been unsuccessful.

    The good news is that something during this time seems to have got my kidney functioning again, even though the ureter is stretched & collapsed. Since things scarred over & blocked the ureter once, I suspect that it’s possible that it could happen again, so I won’t be surprised if my surgeon decides fairly soon to try the stent insertion once more while things are flowing a bit. So MUCH wait and see during these processes.

    The even BETTER good news … no tube & bag, for the time being at least!

    Ron.

    #21760
    Tom M
    Participant

    That is good news, Ron. Thanks for the update. Hopefully you will get back to your BCG treatments soon.

    We are always here if you need us.

    With support,

    Tom

    #21761
    Saldcorn
    Participant

    Glad to hear, Ron. Fingers crossed that everything stays on an ‘up’!
    Best,
    Sue

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