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Bladder Spasms Post BCG

I am writing on behalf of my father (doesn't use a computer.) He was diagnosed with Stage pT1 NMIBC in March of 2020. He had a TURB-T followed by 6 rounds of BCG, full dose. He had another scope and the cancer had grown back. He had another TURB-T followed by another 6 rounds of BCG full dose completed in Oct 2021. This second round of BCG was very difficult for him, much more for side effects than the first round. The biggest one was the bladder spasms. The doctor started him on Pyridium, which did nothing, then doc prescribed Oxybutinin to take as needed during BCG. For the remainder of the 2 round of BCG he took OxyB 3 times daily day of and day after BCG instilment. We also used a heating pad, Tylenol and drank lots of fluid.

He had a follow up scope in Nov 21 and no tumors!!! He will have another round of 3 BCG starting next week. Since last round of BCG he has daily bladder spasms, and urgency. He has taken the OxyB here and there but was advised not to take this daily. I have emailed his doctor twice now regarding the near constant spasms and other than advising to take the OxyB, but not everyday, he hasn't given a straight answer as to why the spasms are happening, if that is normal and should be expected, or what we can do to stop/ease them.

Doc said they will take him down to a 1/3 dose for these 3 to see if that helps with the side effects. I guess I am wondering if spasms so long post BCG are common? It makes sense to me that he would have them during and perhaps even up to a few weeks after BCG, but it has been 3 months. Thoughts?

I will also mention that I have asked his doctor for a plan B since the OxyB cannot be take regularly but he has spasms regularly. He didn't have an answer or solution. My dad does have some other health issues (heart, overweight and smoking.)

Lastly, I understand the fact that medical advise is best left to the doctors and we can get a second opinion but I would like to know if this is common before I take that route.

  1. Hi. As you recognised, we aren’t medically trained but for sure some others can share experiences with you. I haven’t personally had this treatment. Great news on a clear scope. Laura, Moderator,

    1. @anniedreat - I have not personally had BCG and might suggest a second opinion for the bladder spasms. Possibly a different medication would be available for him and also provide a response to your Plan B question. Is he having BCG again as maintenance as he had no evidence of tumors? I wish I could provide a better and more informative response but as I did not have BCG I am not able to provide information on that from personal experience. My best to you both. You will be in my thoughts. Linda ( moderator, team member)

      1. thank you!

    2. Hi. I had my 1st TURBT in October, 2021. My urologist left my catheter in for four days to facilitate drainage of blood, dead tumor cells and urine. I had terrible bladder spasms the entire time, so bad I grimaced in pain every 10-30 minutes, day and evening. Each spasm lasted 2-3 minutes, but it felt twice as long. My urologist claimed that nothing could be done to control the bladder's reaction: I'd just have to tough it out. I did, but not happily. Does your Dad have a catheter? I'd go to the ER, or get a 2nd opinion. I wish you luck!

      1. thanks for sharing your experience here. How are you getting on? Laura, Moderator,

      2. he does not have a catheter. I’m sorry you had to experience that pain. I know just by seeing my dad, who is the toughest guy I know, it is unbearable. Sending lots of love. Xo

    3. Hi Annie. How are things going with you and your Dad? Sending positive vibes your way. Laura, Moderator,

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