Update: After completing my initial 6 weeks of BCG in the beginning of December I had a cystoscopy in the first week of February, Overall the Dr said the bladder looked good but there was one small area of "subtle" redness that we need to keep an eye on. At that time he didn't think it was anything to be concerned about. I had a cytology test done on the same day. The Cytology test came back as " suspicious". This caused us to rethink our strategy. So our options were to go ahead and do the 3 maintenance BCG and recheck in 3 months. But if the subtle red spot was there then we would do a turbt to biopsy. If it was CIS then I would be done with BCG and we would move on to chemo. The second option was to go ahead and do the turbt now to get a biopsy and thoroughly check the bladder. If he finds any CIS then he can scrape it out and do another round of 6 BCG treatments. As a side note this uro never did a turbt on me. I switched to a Uro from an NEC institution after my initial DX. We decided to go with the 2nd option since it's more thorough and if anything is found I would be able to get 6 BCG treatments. He will also do some xrays of the kidneys while I'm in the OR. If nothing is found then I can probably just go into maintenance. I'm not sure how accurate these cytology tests are but it is my understanding they are pretty good with CIS. Even though they didn't say I had malignant cells we felt suspicious was too close for comfort. Has anyone else ever had a "Suspicious" cytology test?
Thanks Swarmy, That is good advice to drink allot of water everyday. It keeps flushing the bladder and I believe it can reduce your acidity in your urine. From what I read the "bad' cells like acidity. I'm sure it's good for the kidneys as well.
My 1st attending Uro Nurse after TUTBT was a prior Army medic.... I was career Army NCO.... we understood each other... she was a God sent in training me. Rule # 1, 2 & 3 she said was drink water.... a gallon a day after scopes....minimum of 4 liters per day on daily bases. I attribute that fluid intake to my ongoing success near 4 years now T1-High Grade. My VA doctor also told me for every cup coffee I should drink 2 cups of water just to displace the diuretic effect of coffee.
I think the key to minimizing BCG for me is drinking a ton of water right after the two hours is up, It helps get rid of the burning and cleans all the residual BCG out of the bladder. The only adverse effects I had besides the burning through my 6 installments is a minor sore throat and some achy joints a few days after, but I'm not even sure that was from BCG or just life. If the BCG is effective it will be well worth the downsides to it.
I enjoy reading all the posts to see how everyone is doing and maybe pick up some tips along the way. We're fortunate to have Sara Anne, Joe and others that provide allot of inspiration and expertise to us along our journeys. I'm following your thread as well and wish you good luck!
My provider is in the process of removing the whole Roll from the documented BCG process. The empty bladder is the size of a Walnut before BCG is introduced. It is coated no matter what position we lay
TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete
I'm having my 3rd BCG instillation tomorrow. With my first instillation, the nurse really trashed my urethra, and it was very painful to urinate for a few days. On my 2nd BCG, I requested lidocane, and there was huge difference - Much better. I'll bet your bleeding was from the catheter.
Regarding bladder pain or reaction from the BCG, I'm really monitoring this experience, and so far, it seems that I'm getting decreased bladder capacity and some burning at the end of urination on the 4th day after the instillation. There's really no pain on the day I get BCG, or on the day after. I'm not sure if this pain and swelling on the 4th day is coincidental for these last two treatments, or if it can be tied to the treatment. I'll post my findings as I move through this. So far, for me, it's been more tolerable than I expected.