ty for replys ... doc appint mar 17 2016 i recon he will tell me what the nurse told me who removed the turp cath/bag, she would be the BCG administrator i did not know enough to ask many questions but she seamed sure of herself.
Feb 1st 2016 TUR grade 2, removed were 2 tumors and many tiny nodes, the 2 large ones were 3.5cm
BCG maintenance in progress
The catheter insertion is pretty uncomfortable, but you get used to it quickly. For me, the first time was the worst. I'm now getting ready for the 5th BCG installation, and I've learned to relax and try to enjoy the process as much as possible (as strange as that sounds). There are much worse things we could go through. Also, the skill of the administering nurse has something to do with it. I have 2 nurses that have placed the catheters, and I can clearly tell that one makes it more comfortable than the other. This could have to do with the nurse's lighter touch or simply having more experience. My best advice would be to relax as much as possible during the procedure and not tense up.
12/2015 - TURBT, non-invasive T1, mixed grade, 3 tumors
1/2016 - Begin BCG weekly for 6 weeks
Well, you have certainly done your homework! Your summary of the BCG treatment is GREAT....Think I will save it to use for other newbies!
As for the "pain" questions, the only real answer is that your mileage may vary....every one is a bit different. Catheter insertion...being female that wasn't a major problem for me. But most guys say (and you will probably be hearing from them) that it is bearable. They use a very small catheter, not like the one for a cystescopy that has to carry a camera, and they usually use a numbing gel first.
The "discomfort" ....I think this is a better word than pain...after instillation also varies widely. Usually there is very little for the first few times. Then the probability increases as the immune system gets kicked up and this shows that the BCG is working, which is what you want. The usual side effects are discomfort and much urgency during the hours right after treatment, and fatigue the day or so after that. You probably wouldn't want to plan to work or go out to dinner afterward on treatment days! I was fine the next day, except for the fatigue. It is also important to remember that the dosage used is not set in stone. IF the side effects become too much, the dosage can be significantly reduced without changing the effectiveness. It has been shown that even 10% of the beginning dose works very well. And the side effects are no where near what patients undergoing traditional chemo have. I was at 1/3 dose by the time my maintenance was over. Occasionally someone is very sensitive to BCG and cannot tolerate it, but this is rare.
We are very fortunate to have this treatment for high grade non-invasive bladder cancer. I am now 8 years cancer-free!
Best of luck to you
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society