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marysue.
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December 19, 2018 at 9:00 am #33243
Refractoryman
ParticipantIs it normal to have inflammation in the bladder 1 1/2 months after my last BCG treatment. I thought I read somewhere that the more inflamed the bladder is after BCG the better, shows it’s doing it’s job. At my last cystoscopy the doctor said he seen some areas showing inflammation and wasn’t sure if it was from the BCG or a possible recurrence of CIS? He ordered a Cytology of the urine and said if it came back A-Typical he wanted to do another biopsy. I have had a total of 15 BCG treatments the last on October 31st, 2018. I had a lot of debris and spasm’s and assume that last session did a number on my bladder. All 5 of my past Cytology’s have come back A-Typical with inflammation. My urine is clear with no visible blood. My doctor does the biopsy under general anesthetic. My concerns are (1) traumatizing the bladder unnecessarily, (2) being put to sleep unnecessarily and (3) for the first time starting to have doubts about my doctor. I know you need to be proactive with this disease but wonder if doctor is possibly jumping the gun?
December 19, 2018 at 10:35 am #33244Jack Moon
KeymasterHi Refactoryman
I will share my experiences with biopsies during BCG treatments. On 2 different occasions my URO took a biopsy, both times were just following a cysto. Each time he asked me if I preferred to have it done now or under general anesthetic as he said their would be some pain doing it now. I always chose to do it now so I did not have to wait and worry. He would change from a flex scope to a rigid scope so I felt it passing by the prostate and a pinch when he took the biopsy, this was followed by a bladder wash. Good news both times the biopsies were negative for cancer, so a Turbt was not required.
I also had inflammation from BCG treatments and my Uro kept a close watch on the areas. Six months after my 30th and final treatment, all the inflammation spots were finally gone.
Wishing all the best,
Jack
Forum ModeratorDecember 19, 2018 at 7:18 pm #33250marysue
ParticipantSome people do experience more “trauma” to the bladder during treatments than others. I don’t know if I’m right and if there is actually any truth to this but with all the people that I know with bladder cancer and have done BCG – those with CIS seem to experience more bladder inflammation. Maybe this would be something to ask your uro.
Many people have small amounts of blood in their urine while doing BCG. It is caused by the inflammation. It may or may not be visible. I didn’t see any blood in my urine until I did the last 4-6 treatments. Even then it was a very minute amount. I had 21 treatments over a 3 year period. The inflammation I experienced did take longer to clear as I progressed through successive sets of treatments. After my first 6 week set in 2008, I had a cysto check 3 weeks later. We only saw one faint pink patch of inflammation. It was gone at the next cysto check 3 months later. With successive sets I waited 4-6 weeks to have a cysto because I didn’t feel healed. We did see a couple of faint pink patches each time but my uro was always convinced it was from the BCG and when I would do another cysto 3 months later, I was clear.
It can take several weeks or a few months to clear the inflammation – everyone’s healing ability is different. What I learned from experience and have passed along to others is – drink lots and lots of water and herbal teas like mint or chamomile not only during treatments but for several weeks afterwards. Many people, including me, found drinking anything with caffeine in it irritated the bladder so I avoided it during BCG treatment cycles and for about a month afterwards. It’s not easy to part with a morning cup of tea or coffee.
I think you are right to be concerned based on your experience with inflammation. My suggestion is have a heart to heart with your uro and mention exactly what you have stated here – your concern over possibly over traumatizing your bladder. You are well within your rights to ask why he thinks another TURBT/biopsy is warranted. Another suggestion – if he is unsure whether the inflammation is from a recurrence or the BCG, ask if he thinks you could wait and do another cysto in a month or so without risk to your health. If it is inflammation it should have subsided more. Hopefully you will get some answers with another conversation. ((((HUGS))))
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