BCG after effects

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I was diagnosed with bladder cancer almost 2 years ago I have undergone initial operation to remove tumour high grade carcinoma in situ I ve had the initial 6 bcg treatments numerous flexi to check bladder 

4 ridged under general anaesthetic once to remove a reoccurrence the other 3 to take biopsy’s all with no reoccurrence .

i have had another 2 x 3 bcg treatments and recently started another 3 after the second one the side effects have been so unbearable that the urology department did not give me the third one .

the main side effects are severe pain from lower abdomen down to penis for the first 4 days after treatment urgency to urinate every hour very little sleep joint pain and feeling totally drained

every time they look in my bladder they tell me the bladder is very red and inflamed which they say could be BCG side effect 

I am now waiting for another flexi on 4 th October to see what’s going on .my last treatment was in July and I’m still in pain stinging when urinating very little sleep and no energy .

last week I passed blood which carried on for 2 days urology carried out urine test the result that I got today showed normal no action required 

  • Hello again  . Really sorry to hear you are still having really bad adverse effects to the BCG. It's a few weeks away, but hopefully they may come up with some answers at your next flexi. I'm sorry I can't offer any practical advice. I just wish you well going forward. Best wishes.

    Best wishes to All,   rily.

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  • Hi Phil,

    Welcome to this group but sorry to hear about your issues with BCG.

    Your side affects sound similar to mine, but don't go on for so long and are bearable. I've had 15 instillations and my last one was at the end July 2024.

    Again my last biopsy showed an inflamed bladder also. I still have stinging when I wee, but no other pains.

    It's very tough when you can't sleep, I do wake during the night with urgency, but not as often as you've been. I can only imagine how tired you must be.

    I hope things start to improve for you soon.

    Take care.

    Trevor 

  • Hi Phil, I have had my bladder removed, and now have to wear a bag attached to my stomach. I was scared before I had the opp but was advised by three doctors to go ahead with the opp. Well nearly six months have passed since I had the opp, and I am doing well. Part from a few leaks from the bags, which can be upsetting I would advise you to speak to a doctor  about having your bladder removed. I am a old git of 84, I now have no regrets of the opp and enjoying life to the full. Good luck and well wishes from Tom

  • Hello Tom, so pleased you are enjoying life and well. Garviv 

  • Tom 

    my surgeon has twice said to me you might have to have bladder removed 

    as time goes by I’m  now leaning towards that option as it might give me more quality of life 

    phil

  • Hi Phil,I was told in 1997 that the bladder would have to come out in the future due to chronic cystitis.I wish they had removed it before I got cancer but it’s a huge relief to have a better quality of life.I was in so much pain for over 30 yrs plus frequency and urgency.I don’t miss my bladder at all.Cystectomy is a big op though.Best wishes Jane 

  • It may well do that

  • PhilG I have packed BCG in, no quality of life with all the side effects. And constant worry about progression. Personal choice though. Leo

  • I dread the BCG treatment as the side effects get worse each time regardless of the time between them

    good luck to you Leo

    phil

  • Hi Phil, I've had 21 doses so far and after the last 6 finishing in July (which was a reinduction course) I found it really painful and constantly having to pass urine, at least half hourly, and it hurt a lot. On the recommendation of someone else I tried Ural powders, which you can get from Amazon, and found that it really helped. Good luck and hope it feels better soon.