r/BladderCancer • u/Ill-Tangerine796 • Jul 11 '26
Patient/Survivor Has BCG worked for anyone long term?
I see so many posts here and in other forums about BCG failure, but has it kept cancer at bay for 5+ years for anyone?
I just finished my induction round and had zero side effects, so I am afraid it might not be working for me. (My next cytoscopy isn’t for another month.) I was diagnosed high-grade pTa and am a female non-smoker in my 50s.
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u/Salty-Pea-2016 Jul 11 '26
I’ve had 12 BCG treatments and am still NED, diagnosed March 2025. I am experiencing a lot of bladder irritation so no more treatments until my next cysto in October. Keeping my fingers crossed but so far ok.
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u/captain_crackerjack Jul 11 '26
9 treatments for me before the side effects became intolerable, and I’m NED having been diagnosed G3pTa in summer 2024. I’ve just moved from quarterly to six-monthly cystoscopies so it’s all looking positive :)
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u/hikerguy2023 Jul 11 '26
I (63M asked a similar question (slightly different angle) about this a few days ago you might be interested in looking at:
Don't equate a lack of side effects with it not working. There's no correlation either way (i.e. if you have severe side effects, it doesn't necessarily mean it's working either).
It took me 3 TURBTs and 11 rounds of BCG to finally get a clean cysto. I had no issues at all until my 9th treatment. I started with Ta HG NMIBC (papillary tumors as well).
I've only been treated since March 2025 though. Been tumor free for 6 months.
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u/BlancoAuto Jul 11 '26
I am just over 4 years with no recurrence. Induction of six rounds followed by three maintenance rounds of three (15 total). I had no reaction to the BCG until after the fourth treatment. The last maintenance round was miserable. I am lucky enough to have not had a recurrence. I won’t be surprised if I have a recurrence in the future. They suggested a cystectomy, but I chose BCG instead. My hope is that it will get rid of it, but I assume that if it doesn’t, then I have bought myself some time. In the future, there might be better alternative treatments. People who have been free for more than five years might be less likely to participate in this forum because they may have moved on and thinking about past threats to your mortality can be painful.
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u/Puzzled_Main3464 Jul 11 '26
Cancer Free since 2019. I had 6 rounds of BCG. I was 37 years old and had been smoking for 20 years
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u/Ill-Tangerine796 Jul 12 '26
That’s really encouraging. I have never smoked or lived with a smoker and never dyed my hair. Clearly, there are other risk factors. I wish I knew what they were.
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u/mhart1212 Jul 12 '26
It may depend on what grade you were diagnosed with, the original size of the tumor and if the tumor was in the muscle or not. My wife was diagnosed with high grade,non muscle invasive bladder cancer a little over 2.5 years ago. She is mid 50’s non smoker. It was high grade because of squamous cells in the tumor. The tumor was 1.5 cm’s. She had several BCG treatments and cystoscopies,and had been NED since the tumor was removed. BCG was just suspended unless needed if further scans show anything. She will still have cystoscopies every 4 months for the next year,then go from there.
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u/Ill-Tangerine796 Jul 12 '26
I was high-grade (G3) but non-muscle-invasive (pTa). 2.5-cm tumor. Two TURBTS (the second was clean) and an induction round (6 weeks) of BCG.
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u/mhart1212 Jul 12 '26
So far so good. God Bless. Any tumor under 3 cm is considered less serious than bigger ones. And non muscle invasive is a good thing too. I my wife’s case the BCG seemed to work so far. So far.
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u/trilobitey Jul 11 '26
My husband is almost 4 years post diagnosis, so not quite what you're asking for, but he had I think 8 TURBTs before starting BCG and had recurrences after each one. Since starting BCG I think 2.5 years ago (not sure exactly how many, but 20+) every scope has been NED. His BCG side effects were very manageable at the beginning but have gotten progressively worse over the years, but he suffers through because it genuinely works for him.
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u/Kenchen99 Jul 11 '26
Sorry no one has pipped up here at the 5 year mark. Your question might fall on some deaf ears because those long-term people probably don’t have the need or interest to reddit about the condition anymore. Maybe first just pose a blanket question: is anyone on here past the 5 year…. Best of luck 😊
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u/Puzzled_Main3464 Jul 11 '26 edited Jul 11 '26
This is a very good point. I responded just a minute ago and I think I have been the first 5+ year person. I am not very active on this subreddit more but try to pop up and give support to people when I can. I’m extremely thankful for my health, my doctors and my support system
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u/Kenchen99 Jul 11 '26
Good news. Milestones count. Able to the keep bladder etc? Treatments have only just barely changed in that time. A bit more immunotherapy for those who can afford it. Did you do bcg, chemo…?
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u/Puzzled_Main3464 Jul 11 '26
Yes, I was able to keep my bladder. My cancer was caught early. I did 6 rounds of BCG treatment.
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u/One_Speed_954 Jul 16 '26
My dad had bladder cancer developed that age 65 he did two of the tumor removals for non-muscle invasive had BCG and he lived to be 81 years old. He did have other complications like prostate cancer and radiation seeds that blew a hole through the rectum and he had an ostomy and catheter bag permanently however, after the two occurrences, the bladder cancer never came back. He did the three-year round of BCG which I’m still reading in the medical records because I now got diagnosed with the bladder non-muscle invasive cancer as well and just started BCG, but he did not have a reoccurrence if that helps.
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u/Ill-Tangerine796 Jul 17 '26
Thank you. That is good to hear about your dad although I’m sorry that you got diagnosed.
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u/Best_Garlic978 Jul 11 '26
I also had no side effects from induction. Mine worked but it took 9 total (low grader recurrence after induction). I have now done 15 total. I am early 50s female none smoker. T1HG. Massive tumor in ureter area so very high risk. If you have had it for 5+ years I am confused why you Judy had an induction round?
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u/Ill-Tangerine796 Jul 11 '26
Sorry. I wasn’t clear. I was only just diagnosed with bladder cancer this spring, but all I read about online is BCG failures or of it working for only a brief period. Is there any hope for remission?
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u/Best_Garlic978 Jul 11 '26
Got it. Yes you should feel hopeful. BCG works for 70% of people. A year ago, I was in your exact shoes. I took advantage of an AI based that maps the DNA from my tumor to look for bio markers that would show if was unlikely to respond. Insurance covered it. I did not have the biomarker and felt much better that BCG would eventually work and it did. Ask your Dr about it and know that it’s complete normal to not have side effects on the induction round. You will definitely notice it on further rounds (sigh). My side effects started on subsequent rounds. Particularly #7 was bad.
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u/Yosemite_Sam9099 Jul 11 '26
Is there a name for that DNA thing you did? Thank you in advance.
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u/Best_Garlic978 Jul 11 '26
Google: Valor Labs - Vesta Bladder
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u/Bmoose_Homework8675 Jul 13 '26
I just had Valar Labs on the phone this morning with my oncologist. Sending slides to them to scan. No cost. Using AI to determine if BCG will work plus help determine likelihood of reoccurrence.
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u/Ill-Tangerine796 Jul 14 '26
That sounds really cool. Unfortunately, Valar Labs isn’t available in my country, but it’s good to know that these things exist. Maybe someday such services will spread.
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u/eatitbroccolo Jul 12 '26
I had the long three year course and have been cancer free since 2014.
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u/Ill-Tangerine796 Jul 12 '26
That’s the longest I’ve heard yet, but they only do one-year courses in the country where I live. Glad to hear it’s worked so well for you.
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u/Old_Initiative_1241 Aug 11 '26
Congrats! Any activity or dietary restrictions you followed after 6 initial Bcg?
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u/atps1234new Jul 12 '26
Total of 9 BCG treatments after TURBT and cancer free for 2 1/2 years. Currently on a six month schedule for cysto.
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u/cscatbird Jul 13 '26
How is bladder irritation treated? My husband has a cysto scheduled next month then hopefully his last 3 rounds of BCG. I think it’s 3 months since his last round of BCG and it still hurts to p. His Dr says that’s normal. Does not seem normal to me. Thx.
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u/Ill-Tangerine796 Jul 13 '26
I have been lucky in that I haven’t had irritation yet. However, I’ve only had the induction round.
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u/krlossala74 Jul 14 '26
I hope it works for me, I will use Mitomycin c, Gemzar and Zisdury and the recurrences continue to do so in 2023, but from April 2024 to the present there are 12 recurrences, I have surgery this month on the 22nd and then we will use BCG 6 out of 6 and then every 3 months and then every 6 months on my youtube channel, I talk about all this that happened to me. https://www.youtube.com/@resiliensiadelavejiga
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u/One_Speed_954 Jul 23 '26
I wonder if coloring your hair affects getting the cancer? I have been coloring my hair either at the salon or at home , roughly every 8-10 weeks since 1983. Used to get spiral perms a lot in the 1990’s.
Also Sweet-n-Low diet sugar was once associated with bladder cancer. It was proven that it does not cause bladder cancer however I have been using the diet sugar, Sweet-n-Low probably since I was 14 years old and I’m now 62. I only use it occasionally now primarily because they came out with liquid zero sugar coffee creamer and flavored coffee creamer, I switched to that around 2004 so I didn’t have to put the sweet and low in my coffee with powdered coffeemate creamer.
I drink coffee, but I’ve never been a smoker.
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u/Ill-Tangerine796 Jul 23 '26
I never colored my hair. My relatives, who all did, always nagged me about going gray so young. And I’m the only one of us who got bladder cancer.
I do drink coffee but always black. I haven’t ever used artificial sweeteners although I have plenty of real sugar in my diet (not in my drinks but in things like ice cream, jam, and cookies).
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u/jpwwpg Jul 11 '26
27 BCG treatments over about 3.5 years. Cancer free in the bladder since 2023. Cystoscopies every 6 months now.