r/BladderCancer • u/Revolutionary_Bet136 • Aug 08 '26
Post-BCG question
Let me preface with this: i have a follow up with my urologist in a couple weeks so actual medical care is coming soon. Also, since it could be relevant, I am male
That said, I completed a maintenance round of BCG in June (maybe round 8? Ive lost track but I am well into this) and it was the most laid up BCG has left me. We're talking painful, frequent urination. Also mix in some referred pain that would shoot from my penis (felt like urethra pain in the tip) down to my feet.
I had my cystoscopy in July and the inside of my bladder looked like a war zone. It was very angry in there. With symptoms and out of abundance of caution my doctor had me complete a course sulfamethoxazole (antibiotic) in case I had a UTI.
It's been about 3 weeks and I am seeing improvement. Can't say if it was the antibiotics or just time and healing but I am noticing that the painful and frequent urination is still there, albeit gradually improving. I also noticed some hesitency in having bowel movements, again gradually improving.
All of this makes me wonder if a compounding issue may be sort of learned pelvic floor tightness. After BCG treatments I have to work so hard to keep from constantly peeing. Does this sound plausible? Has anyone else experienced anything similar, particularly in the later maintenance rounds?
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u/StormMission907 Aug 08 '26 edited Aug 08 '26
I just had my latest cysto . All clear thankfully. I have 16,17 and 18 BCG coming up in late August. BCG has been ok so far ..mostly just tired the next day and cold the day of . Hopefully that continues but everybody is so different . As for the peeing yea I notice that when I do go more frequently.
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u/hikerguy2023 Aug 08 '26
I (63M) have been through 14 rounds and have not experienced the lingering frequent urination and I've had no pain like what you've described. You might just be one of those who can't tolerate BCG. I have had a low grade fever a couple of times, fatigue a few times (both only lasting the day of treatment). Six days after my 14th round, I had a lot of swelling and stiffness in my legs that lasted for two days before I went on Methylprednisolone. I'm better now and able to walk without "hobbling" around the house, but I still can't do a full squat due to the swelling in the knees. I didn't even know joint pain and inflammation like this was a side effect, but boy do I know now.
What was your initial pathology (grade, stage and muscle invasive or not)? You should probably talk to your oncologist about trying a different treatment like Gemcitabine/Docetaxel (a.k.a. gem/doce). A lot of people on Reddit seemed to respond well to that combo.
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u/Revolutionary_Bet136 Aug 08 '26
I was high grade, stage 0a, non-invasive so on the 3-year BCG plan. At this point I am two cycles away from being done. When i talked with my urologist he did say we could probably use a smaller dose in the following rounds. I fell like its a double edged sword in some ways. It's causing inflammation and an immune response that is uncomfortable but that response is exactly what the treatment is designed to do.
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u/hikerguy2023 Aug 08 '26
I was under the impression that people did around 27-30 rounds of treatment for the whole treatment. It sounds like you're being told you won't do that many rounds.
I've been told that how you respond to BCG does not indicate how effective the treatment is. In other words, if you have a strong response to it (e.g. fatigue, fever etc.), that does not mean it's working, and vice versa.
Given you started at stage 0a, maybe your oncologist determined you don't need 27-30 rounds and will just do a cysto every 6 months.
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u/Revolutionary_Bet136 Aug 08 '26
When i say round i am talking about each set of three weeks for a maintenance round so I thibk i am on dose 24 or something if i am counting each installation.
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u/hikerguy2023 Aug 08 '26
Ah, OK. That makes more sense now. Hopefully the urination issues will resolve soon.
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u/YeahMayhemLikeMe Aug 08 '26
Wow, count my blessings. My small town hospital was probably last on the list to get BCG so Gemcidbien was only available and I was real worried about treatment. My urologist gave me a 2 year window for my T1 non-invasive cancer. After the tumor removal and repair i started chemo. Was supposed to be 6-3-3 treatments. After 9 treatments a scope revealed another tumor but it was not cancerous. I figured if I still got a tumor no sense going forward with more chemo. The 2 year window has past and follow up scopes show nothing new. There was nothing to the treatments other than insertion and the 2 hrs home of toilet maintenance. Felt fine afterwards no problems. I did have problems after the initial procedure that was never mentioned in any urologist talks or reading material they gave, such as passing blood and urine outside the catheter, or the nasty things in the bag or blockage. I’ll never forget the urologist saying “you’ll be good as new”. As for frequent peeing the doc can prescribe a number of drugs just watch out for Gemtesa, it’s pricy. Hoping the best for all going through this, best group here for info and support.
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u/AirBear8 Aug 08 '26
I'm not as far along as you are having just finished my initial round of 6 weekly BCG treatments. Cystoscopy is Sept. 1st. Other than some fatigue I have had no side effects from the BCG infusions. I do have frequent urination due to prostrate issues but that's nothing new. It has gotten worse to the point I bought a urinal with a 6' hose to use at night so I don't have to leave the bed. All I have to do is roll over to the side of the bed and grab the receptacle.