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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?

  1. Thanks for sharing. I hope that my fellow moderators will chime in eventually along with others who have actually experienced BCG. For now, I'll leave with you with a few article links to check out that will talk about some of the things you're wondering about. I hope that helps in the meanwhile. See below - in no particular order. ~Liz, Moderator

    1. Thank you so much for the multiple links - they were quite informative. Some were a bit daunting and more negative than I wanted to hear, but it's better not to sugar coat the potential for unpleasantness. I do feel better prepared now for my first BCG treatment (and will be prepared for each following to become more uncomfortable).

    2. @gnick540 You're welcome. It is all a little daunting, to say the least, in my opinion! From the first-hand accounts I've gotten, the effects of BCG are more uncomfortable than anything but not nearly as bad as the "gold standard" chemotherapies. The important thing to keep in mind is that each treatment affects each person differently, and while those experiences say one thing, that might not be what you experience. Some can work through most of the time while getting BCG with only taking the day off and maybe the day after work, while others are not. There's a wide range. Good luck with your first treatment, though, and we'll look forward to hearing how things go. ~Liz, Moderator

  2. 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.

    I hope these resources help you. Do you have any specific fears or hesitations we can support you through

    Jada ( team member)

    1. @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, team member)

    2. I was discussing a similar problem with a friend that has urethral cancer and he had a catheter for a while and since the bladder doesn't have to work to keep the urine in, the actual size of the bladder shrinks too. So not only are you needing to retrain the bladder to urinate and release "on command," so to speak, but you're also working with a smaller amount of volume that it can handle. ~Liz, Moderator

  3. 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.

    1. so glad to hear it was a less traumatic experience than you were anticipating! What a relief, I'm sure. So glad to hear that things went well. Much luck with future treatments! ~Liz, Moderator

    2. @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, team member)

  4. 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!!

    1. @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. team member)

    2. 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.

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