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questions, questions, and still more questions

3 years 2 months ago - 3 years 2 months ago #49383 by Alan
Welcome to our club but, sorry you have joined! For whatever it is worth your URO is following a pretty standard protocol adding that none of us are doctors. Low grade, small papillary tumors normally don't respond to BCG as well high grade tumors thus the "wait, watch and scope" suggestion. That said sometimes a patient will still do the BCG as you mentioned and you seem to understand the potential side effects. For my $$$, as BCG does involve some small risk upon each instillation such as TB, UTI's, urethra irritation and other side effects, I probably would watch and wait being a low grade, small tumor. My profile and experience is similar to yours except I had a high grade tumor. Should it come back you can always use BCG later. Please research further on this site and it might help solidify what you want to do. Come back any time an ask further questions as someone is usually lurking to help answer question. Just be sure to keep your 3 month checkups!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
The following user(s) said Thank You: DougG, cwhite04

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3 years 2 months ago #49382 by cwhite04
Hi! We are new and just feel overwhelmed at time....

So my husband got up one night to go to the bathroom (half asleep) and thought he saw blood when he went but when he went the next day all was clear so he thought he imaginged it. About 2 weeks later he noticed blood when he finished urinating. We scheduled an appointment with uro. This went on for4 days. We saw the uro and he did a an exam Iincluding checking prostate and didn't find anything but ordered a ct and cycstoscopy. We scheduled the ct and then scheduled the in office cystoscopy the next week. Four days after ct we got a call the cystoscopy now needed to be scheduled in hospital under general anesthesia with a possible TURBT because they saw what they thought was a tumor on the ct. We had the surgery and went back 9/18 f8r patho report. He is diagnosed with a 1.3 cm stage TA low risk papillary carcinoma. Our uro's normal protocal is just follow-up flexible cystoscopy every 3 months for at least the first 1 to 2 years then less frequent for 5 years total. We brought up BCG to help lower risk of recurrence. He said yes it can help lower recurrence by 1/3 to 2/3 times and if the patient wants this approach they will do this. I guess my big questions are if the this will lower recurrence by such a big percent why wouldn't that be protocal? Are there serious side effects we need to take into consideration before proceeding? (We were told the normal side effects are minimal and the scary side effects are so very rare). We were told that he may feel burning, urgency for 24-48 hrs after treatment. Is one round of once a week for 6 weeks enough for this stage/ grade? I've read so many conflciting standards I am not sure anymore. Thsnk for and responses, opinions, or experiences!

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