Still peeing pink, with some pain, 10 weeks out from BCG; recurrence seems likely

  • 5 replies
  • 68 subscribers
  • 125 views

Well, 10 weeks out from the last of my BGC induction course (after two TURBTs), and I'm peeing pink pretty much daily.. Also, some pain from the area of the bladder.
Given the results of my flexible scope a couple weeks ago -- two spots he wants to get a better look at and biopsy -- I'm feeling fairly certain the BCG did not take and I'm looking at recurrence of my HGT1 tumor.
Nothing to do but wait for my March 5 rigid scope, I'm afraid. Trying to get my head around it. Trying to avoid radical cystectomy and hoping I'm a viable candidate for gem/doce. We'll see, I guess.
Feeling a bit down.

  • Hi Mark. Sorry to hear you are feeling a bit down. it is understandable. The sight of some blood always makes us think the worst, but it is not always so. We know BCG can leave suspicious marks and sometimes that's just what they are. Hopefully all will be well when you get your cystoscopy. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Thank you, @rily, much appreciated and always glad to hear from you!

  • Hello Mark, 5th March will soon arrive and hopefully answer some questions, including the chance of identifying where the blood is leaking from. If the cystoscope is the same type used in a TURBT they may even take the opportunity to cauterise the blood leak.  I fully understand you feeling a bit down. Having pink pee and some pain is a constant reminder that something still needs investigation and until that happens I think we all tend to speculate on the gloomy side. I had a sudden, quite strong bout of pink pee a couple of days ago just before going to bed. It took longer than usual for normality to return, but in the 3 reddish hours I had almost mentally written myself off (again!). All the best and maybe your team will come up with acceptable solutions to your problems soon.

  • @RayMK
    Very well said about the "constant reminder." I think there are times when having to think about the cancer is worse than the cancer!
    Re the rigid scope, indeed. My urologist has already told me that if he sees anything in there that needs to be cauterised or removed, he'd do it that day. That is, this may become TURBT No.3.
    I'm absolutely fine with that. The TURBTs themselves don't bother me all that much. It's later ... when you wonder if  any of this is any having an impact, that a fellow's mind begins to paint dark pictures.
    In any case, I appreciate your encouragement. In the end, we can only keep showing up for our care and giving it our best. And everyone here makes that a whole lot more bearable.
    Thankful for you all!

  • Hi Mark,I’m sorry to hear you are feeling low.I hope it isn’t a recurrence and that anything untoward can be treated.Love Jane x