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cystoscope totals?

T1 High grade 5 + years 3 x TURBT with BCG failed BCG 2 year mark + went on Gemzar.Been over 5 years and still get scopes every 3 months even after going 6 months on Gemzar maintenance program. I'm now consistently presenting hematuria with large clots for 2-3 days afterwardcystoscope, something not happen in past very often. Routine now. My question is just how many, how long can our urinary track take this procedure before it wears out? Dumb question but gotta be some numbers on that somewhere. Some tips om what to watch for. I know I will be on this schedule for rest life unless it returns. Mentally it's tiresome at times but otherwise not a bad Cancer life I guess.

  1. @milsurpgun- _ I am not a medical professional and therefore cannot provide advice from that standpoint. In my opinion I would think that the treatments might cause more of an issue than the tests. I might suggest talking to your doctor about your concern. It seems that everyone's bladder can respond differently. It may just be normal for you to have blood following this test but I would ask the doctor to be sure and ease your mind. My best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)

    1. @milsurpgun thanks so much for sharing your experiences. I am not a doctor, only a caregiver who was side by side as Mom battled. I was triggered by your mentioning of hematuria and large clots. I have yet to share this part of my Mom's experiences, however we started her on gemcitabine and docetaxel after BCG failed. About 3 treatments into the cocktail infusions, Mom began getting large clots as well. Some of them actually plugged her urethra, and she had to squeeze and push. At the time, I convinced myself wow, the chemo is really working! "It's stripping the internal tissue and killing anything attached to it!" I told Mom. Now I'm not sure. I would definitely ask your doctors about your concerns, and for goodness sake never be afraid to seek out a second opinion on anything you are uncertain, unclear, or doubtful of. Praying for you and following with much interest!
      -Charles (Moderator / BladderCancer.net)

      1. Thanks for reply Charles. I see in my scope results/cytology reports that cancer not back yet but noted was wear to bladder walls from treatment so I'd venture a guess at some point my bladder will rebel? Have heard of some who bladder crystalize from this process. Knew going in this was all about containment until day we couldn't.... not a candidate for radical cystectomy (sic) due to other gut surgeries (thanks Army/Vietnam/Wounds) so will ride till the end and see what develops. Doctor also says my prostate is like HUGE but none seems concerned about cancer there.... never even been checked.... seems mindset is why worry about that ya already got the Bladder-C. I never know with medical if they just too busy to relate details to me or no details to relate?? Appreciate u folks input here.

        1. Since my multiple turbts (9 in 5 years) and cystoscopies every 3-4 months as well as multiple intravesical treatments BCG, Gemcitabine, docetaxel, Mitomycin, I always have some blood in my urine. My cytology shows +3 which I guess is my new normal. I also notice some pinkish color in my urine after exercising. My urologist and Primary Care are not concerned and say it's from bladder irritation caused by all the treatments.
          I do not have clots though. My last 2 cystos showed No evidence of disease so I am on maintenance with infusions of Mitomycin. I just finished a 3 week series. My doctors have always told me to call them if I experience large amounts of blood or clots. So tho I'm not a medical expert, I would advise you to bring this up with ur doctor. Also, The intravesical treatments are cumulative so the more you have the harder the side effects may become.



          1. Glad to hear your recent scopes have shown no evidence of disease. Wishing you continued better health. Laura, Moderator, BladderCancer.net

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