The cystoscopy was done in the office and he did not do any biopsies. He didn't think the subtle red area was a concern at the time but now with the suspicious cytology results he wants to go back in and take a more thorough look and scrape out and biopsy any area that doesn't look normal. He didn't see any lesions. The only concern is CIS, He didn't say anything about a second turbt. I know when I was originally diagnosed that URO-oncologist didn't suggest a second turbt. He wanted me to just start BCG. I was feeling pretty good about my bladder after the cystoscopy, I seen the bladder and I didn't see any red at all. The last time I had a cystoscopy I had allot of red which he thought was inflammation.
When they did the cystoscopy, did they perform a biopsy, and if so, did they send biopsy(s) to a pathology lab for analysis? It seems they could sample this area without doing a turbt.
Correct me if I'm wrong, but if they do a turbt, won't they have to another follow-up turbt after the biopsies are analyzed? -I believe it's standard procedure to have a "clean-up" turbt following the first turbt.
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!