What side effects did you have BCG bladder cancer treatment?

This is an ongoing update. Yesterday I started BCG #1 of 3 in my third round of BCG treatment. From this group and other references, I got the impression that the reactions and side effects to BCG would become harsher as the time line of treatments went on, The first 6 were almost like a non event. The second 3 had some hematuria, small clots, slight headaches, and burning urination as the BCG exited. During yesterday's beginning of round three of BCG, I experienced burning, almost painful urination, hematuria for 4 hours after the first void of BCG, small clots, headaches off & on during the day, which worsened last night, and a general fatigue/malaise. Also sleep last night was not very good. Today all seems back to normal. Therefore my experience is that my reaction and side effects to BCG are becoming more severe as time goes on. However given the more severe potential outcomes of having NMIBC versus BCG treatment, which has worked successfully thus far, it is worth putting up with these side effects.

@jenspray, have you been able to relieve the pain? What helps? How are you doing?

yep, I participated in an FDA treatment study and had a lot more BCG than the standard six. The primary side effect for me was the fact that I had to pee about every 3-4 minutes, 24/7. When I attempted to ignore the initial urge to pee a real bad burning sensation began that got worse until I did pee. So, I was constantly running to pee and, thus, unable to sleep at night for about 16 months, until I left the program and opted for ileall conduit surgery. I'm not sure the BCG was the primary culprit but I'm pretty sure the "catheter in - catheter out" frequency was a primary contributor.

I finished the initial rounds of BCG treatment 1 week ago with one week of absence due to a water infection. Apart from tiredness no obvious side effects. I have however pain from catheter insertion Turbt and Cystoscopies. Relief is through local pain killers. Does anyone have the same problem?

@winmic, hi Mike. Welcome. I'm glad to hear that the BCG treatment is going well so far.

I read in your introduction post that TURBT and cytoscopies were in 2024 and Jan 2026 (https://connect.mayoclinic.org/comment/1569192/). Does this pain persist even now?

The TURBT and Cystoscopies were infact during 25 and early 26.
Yes l am still in pain from these proceedures.

I had the TURBT and then 3 weeks later started the 6 week treatment of BCG. Everything went well...after each session I had the burning and pressure of peeing every hour or so. Other than that, no side effects until after completing the 6th treatment. About 2 weeks after my 6th treatment, I started having horrible joint and muscle pain. My DR put me on a 6-day treatment of prednisone and the pain went away. However, about 3 weeks later, the pain in my shoulders, hips, and quads came back with a vengeance. My DR stopped any further BCG treatment, and I am now being seen by a Rheumatologist and on prednisone again with a diagnosis of "polymyalgia rheumatica". My cystoscopy came back clean, so I won't know what further bladder cancer treatment I will have until July when I return for another cystoscopy. I have been told joint/muscle pain is a very rare side effect.

Two years after my bladder BCG treatments, 6 months ago i was diagnosed the cancer had spread to the lower and beyond my lymph nodes. Currently having chemo treatments to slow the growth.
My lymphatic cancer at 84 years is terminal. This week i was diagnosed having TB from the BCG fortunately its contained in the bladder. My side effects are entirely due to my urologist when ignored after BCG treatments for 18 months. Life goes on even with very bad days.

I was fortunate to be able to tolerate the BCG treatments that were successful in stopping tumor growth. Urinating after the treatment was painful. I felt like I had to keep urinating when there was nothing left. My doctor prescribed pyridium which I took along with Tylenol, once after treatment snd at bedtime. Those medications helped. Following a short period of discomfort, I was a bit more tired for a few days but had no more pain when urinating. I considered my BCG treatments much less difficult than intravenous chemo for many cancers. I'm 2 years clear and thankful that I was able to obtain BCG treatments when there was a shortage. People respond differently. I hope your experience will be without difficulty and successful.

I had 6 BCG treatments after diagnosed with NMIBC. After a couple of weeks I started having horrible joint/muscle pain in my shoulders, hips, and other parts of my body. I went to a Rheumatologist and was just now diagnosed with Polymyalgia Rheumatica. I'm on a taper regiment of prednisone and not sure what further treatment I will have. Pretty scary side effects!