What to expect from BCG treatment?
I had a diagnosis of high grade non invasive tumor on July 30 and moved quickly to set up treatment using BCG immunotherapy beginning late August. But I've been left without instructions on what the treatment is like except that "the bladder is filled with a liquid that must remain inside for a couple of hours before being expelled". Where can I learn how to deal with a full bladder for a couple of hours, and what side effects are likely after I leave?
Hi
, let me start by saying that you're very strong and ahead of the curve with just reaching out with this question. BCG varies for each person but I will say the articles liz linked below are great. I wanted to link a few other 1st person experiences ranging from the good bad and ugly. It's scary but it can work.
https://bladdercancer.net/living/how-i-coped-with-treatment-procedures
https://bladdercancer.net/?p=4416
https://bladdercancer.net/?p=3244
https://bladdercancer.net/living/maintenance-bcg
I hope these resources help you. Do you have any specific fears or hesitations we can support you through
best,
Jada (BladderCancer.net team member)Update (for those reading this later) - my urologist says the bladder got lazy while the catheter was in, and it will take time to regain its normal function (and capacity). The staff doing the BCG responded saying they will leave the cath in place and clamp it. (Sounds like an ordeal....) That will also address my 2nd question about getting BCG causing problems in the urethra. 
@gnick540 - interesting comment about your lazy bladder but it makes sense. If you are not using a "part" as often as before it make sense that it would get "lazy". I assume that this may be something others have experienced. Thank you for sharing this information. My best to you. Keep us posted on how treatments go. Linda ( moderator, Bladdercancer.net team member)
Update following first BCG treatment: All that worrying for no reason! The procedure was easy and produced NO discomfort. If only the urology nurse who set up the treatment and was responsible for answering my questions had spent two minutes consulting with the nurse who actually did the procedure. I was worried that they were going to pump me full of liquid and then expect me to lie around for two hours in various positions while the BCG did its thing. NOT SO. Only 50 ml of solution was used - literally half of my already low normal bladder capacity. And with the cath removed immediately, I was sent to wait in the hall for 60 minutes. At no time did I have any urge to urinate and the solution had zero effect on me during that time. In the four hours that followed, I drank lots of water to flush everything and so far have had no burning or any other discomfort. @qnick540 - that is great news. I think unfortunately some of the people who provide information are not necessarily those who have been through it. I am happy that things went well and hope that the BCG is successful for you. Please keep us updated on how things go. My best to you. Linda ( moderator, Bladdercancer.net team member)
I had my second TURBT July 6th. I’ll be getting my 6th BCG treatment in 2 days. The side affects became more severe after each. After the 5th, which I had 10 days ago it has taken until last night for the pain during urinating to stop and to Be able make it two hours between the need to urinate. Still, all things considered, BCG immunotherapy treatments are bearable and well worth the aggregation if they truly reduce reoccurrence. Trying to keep the BCG in for 2 hours was impossible the first 2 times - maybe we started too close to the operation date? After the second one it was hard but doable. Be prepared for muscle aches, fatigue and some pretty bad pain during urination the first time and for a day or so after treatment. Drink lots and lots of water starting 2 hours after treatments. That seems to reduce the pain somewhat. Above all - stay positive!! @WesKrantz1958 - Thank you so much for sharing your personal experience with others. It definitely makes a difference for those going through these procedures to hear how others have faired and what they may expect. It seems as though some breeze through BCG and others have it not so easy. I think that drinking lots of water after the procedure is always good. My best to you. Linda ( moderator. Bladdercancer.net team member)
Hey gnick. I get two vials that have 60 ml each and they mix those with some saline solution. I'd estimate the total amount of liquid at about 250 ml. I just yesterday joined this group and I am now feeling like a bit of an idiot for never having had checked the typical dosage. Anyone? My doctor had maintained that 2 hours is the ideal time to hold it in, and that 1 hour is the minimum.
I have no illusion about breezing thru this BCG - I accept that the effects are cumulative, and I'm ready for that. I just didn't expect to have NO effect after the first dose.
@gnick540 - BCG seems to have a wide range of effects on people. I hope that you find the treatments successful and that you have minimal side effects. My best to you. Linda ( moderator, Bladdercancer.net team member)
