On the BCG journey

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Nice to join those from whom I can learn and hopefully share experience. Diagnosed with CIS in November 23, had the TURBT, 6 BCG instillations, GA cystoscopy and now on the 2nd of 3 maintenance BCG. Biopsy showed the CIS had gone but I’m a cautious chap by nature so not getting carried away!

  • Hi  . Not had the pleasure of BCG myself but it sounds as though it seems to be doing the trick for you. They should keep a close eye on you going forward with regular follow up flexible cystoscopies. I hope all goes well. Best wishes.

    Best wishes to All,   rily.

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  • Thankyou rily. Some of the BCG instillations have been tough (including the current one) but, as they say “what doesn’t kill you makes you stronger”.

  • Hi Andy yes I found it tough too, but as you say……What were the worst aspects for you. 

  • On 2 instillations, including this one, I had excruciating pain for a few hours after I emptied my bladder. I was screaming into a cushion when I went to the toilet! Even the “easier” ones have been quite difficult with the usual burning, frequency etc. This most recent one has been the worst because 5 days later I’m still feeling many of the side effects when usually they’re gone after a couple of days. What about you ?

  • Top side effects in descending order from most to least impactful:

    Fatigue

    Frequency of urination + urgency esp at night

    Irritated prostate - burning bladder and glans penis

    Eyes - seems to have impacted my vision, need to get it checked, I had a baseline survey done before treatment 

    Some liver pain in 2 to 3 days after each installation

    Arthritic gout type reaction

    Headache after installation for a day or two.

    Three weeks after finishing number 6, I still have frequency and prostate pain probs.

    My nurse says “it shows that it’s working”

    Slight smile

  • Yikes! Mine were certainly not this extreme. They (fatigue, some burning while urinating, urgency, and some flu-like symptoms) did linger for many days, though. 

  • Fatigue, irritated prostate, pain when peeing, frequent urination, urgent urination, headaches, affected vision a bit, some liver pain. 3 weeks after number 6, still got problems - frequency, irritated prostate. All went quite well until number 6

  • I can see from what I’ve read that everyone seems to have a different experience. I haven’t had any of the flu like symptoms.

  • Funnily enough, symptoms of 6 hung around for me also. Maybe it’s something to do with the relief of getting to the end and looking forward to a break?!

  • Hi Andy4548,

    Sorry to hear about your diagnosis, but glad the BCG is going well.

    I'm also on the BCG treatment course, finished number 12 in January.. Some instillations go better than others, I don't always last the 2hours, in fact I've probably managed the full 2 hours about 5 times out of those 12.

    My last biopsy was in March and came back clear, but like you I'm not getting carried away. I was diagnosed with grade 3 which I understand is aggressive, but whatever the BCG does it seems to be working... 

    My next BCG maintenance is due in June or July, so I'm now on six monthly breaks between treatments, which really does help me.

    Lot's of people have different affects from BCG, I've been lucky but have had some discomfort, pain, fatigue etc.

    I wish you all the best and keep us updated.

    Take care.

    Trevor.