Where do I go from here?

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Hello all. My name is Steve, 71 years old, and this is my first post here.

Back in July I had  a single episode of haematuria. I called for a GP appointment next day and the wheels started turning very rapidly. Long story short, I was diagnosed with bladder CIS and prostate cancer (Gleason 3+4).  Having both conditions requiring treatment makes it rather complicated. It was decided that I should go on hormone therapy to keep the prostate cancer in check while undergoing BCG for the bladder. I finished the induction course of BCG on Nov 20, expecting the follow-up blue light cystoscopy to be six weeks later. Instead, due to staff availability issues it didn't take place until yesterday, nearly five weeks late. The preliminary outcome (pending histology and an MDT meeting) is that it doesn't look great. Instead of one smallish patch of CIS I now have two patches, both biopsied. I'm expecting full results in 2-3 weeks.

In my chat with the consultant afterwards, she suggested that I might be offered another course of BCG as it sometimes works better second time round. Does anyone have any experience of this?

I'm now four months into the hormone therapy and getting a bit nervous about how long that will have to continue, given its long term effects on bones, muscles and heart. The other side effects I can tolerate. The trouble is, that every delay in getting the bladder sorted lengthens the time on hormone therapy.

I've been offered either prostatectomy or radiotherapy for my prostate cancer, but I feel that the likelihood of requiring bladder surgery is sufficiently high that radiotherapy is inadvisable, given that cystectomy would then entail salvage surgery, with additional risks. Obviously, if I require cystectomy, then my prostate goes along with it.

At the moment I'm very uncertain as to what happens next. While I understand that everyone's situation is different I'd really appreciate hearing from anyone whose experience is similar.

In the meantime, I hope that the extreme urgency and leakage following yesterday's rigid cystoscopy settle down soon. 50ml a time and impossible to hold on  while painful to try ain't my idea of fun.

  • Hi Steve,

    Got my diagnosis mid-jan, and just had TURBT on 1st.

    So not a fan of rigid cystoscopes. My resection included involvement of upper Urethra as is passes through Prostate.

    The urgency I'm feeling I am guessing is down to that area at the base being involved in the resection. I cannot sit normally, and am nipping to loo every time I stand up, or 60-90 mins otherwise. A full nights sleep would be nice.

    Likewise not passing much each time, I think I should try to drink a bit more. I need to ensure I wash/shower regularly to reduce chance of infection, as well as changing the Tena Men pad regularly, that I am using to trap dribbles.

    Really wish our bathroom suite included a 'bidet'.

    Likewise I'm in that twilight zone waiting for grading of tumour, and outcome of MDT discussions. However, I did not have any pre-turbt treatment, and the immediate post-procedure Mitomycin C either. At least not mentioned by Surgeon, or in after action report to GP. That a Cystectomy and Prostatectomy were mentioned by him does have me wondering just how advanced and awkward the little bugger was!

    Post procedure no fun at all! Thinking this is exactly what my enemies deserve a dose of too!

    Take care, hope after effects improve soon.

  • I was diagnosed with CIS 2021 I had turbt and 15 bcg treatments..I was having 3monthly flexis for just over 2 years then went to 6monthly ..I then went to 9 monthly and had a flexi last week thankfully all clear even though my mind worked overtime and was convincing myself it had returned.. next time I go to 12months ..this is great even though I'm pleased I find myself wishing I was still having them more frequently..can't win really ... when I read about 70%of CIS returns I was also worried... I must pray that I am one of the 30% who will be cured ..best of luck to you all on this journey x

  • That’s fantastic news Hou, 

    im up for a flexi in a couple of weeks…im only a year in…gives me hope..

    Nigel 

  • Good luck Thumbsup every time we're due for flexi we get worried and imagine the worse .. I hope the bcg isn't too bad I seemed to cope with it ok ..some sessions were worse than others and washed me out for a day or two but if I had too have it again I would know what to expect .. I have stopped drinking any pop and drink lots of water since finding out about my bladder cancer ..I also take a cranberry tablet and an aged garlic tablet daily ...don't know if this has helped.. I am 69 years old..regards Tina 

  • Cheers Tina, I’ve been ok with the BCG, I suffer with anxiety which has been up and down..

    im on the lemon barley water and red bush tea…works for me..im walking loads and trying to eat healthy..thanks for your input…it really helps…

    Nigel 

  • You have my sympathies. I'm having to wear pee pants and I have to go every hour, before I want to, otherwise the urges are unstoppable and, now, I get bleeding too. Avoid the urge and no bleeding. I'm guessing the area at the base of my bladder is involved too. I presume it'll settle down over the next few days, but it has come as a bit of a surprise. The first one I had, despite being combined with a prostate biopsy, didn't seems to have nearly as many after effects. C'est la vie.

  • As I told my nephew when he contacted me after hearing the news, 'I can only play the hand I am dealt'.

    I am a realist, and whilst I am trying to not look too far into the future, I also realize that I do not get too much of a say in where this ends up, so it's a coin toss if I make it another 5 years.

    I'm quite determined, but mostly pretty stubborn. So will try to 'keep buggering on' to use Winston's words.

    It is sweet to hear the kind words and encouragement from the friends I've made over the years, but I've never been of the opinion that you can 'fight' cancer.

    The way I look at it is, I will take the advice of the Doctors and Surgeons as to what the most appropriate treatment option is at any particular time. Try to carry on with my everyday life for as long as I can, and put up with any unwanted side effects of treatment as best I can.

    I gave up smoking 13 years ago, I am virtually 'tea total', and my soft drink of choice is 7up Zero. I am not giving that up, but then I mainly drink that in the Summer.

    It's a bit late for me to worry about being ultra food concious, so I'll try to eat sensibly, but it was the Smoking that was probably the causitive activity.

    That and that my maternal grand father died of Ca Bladder having been diagnosed very very late. (He'd kept quiet about any symptoms he had).

    So there we are, I'm a verteran, and we're not known for going quietly, so see you in 5 years!

  • It's what my hosp said, back in 2011. I don't know if there has been any improvement in terms of efficacy of detection, instillation with heat/ light etc.  Remember that long term can be 10 or 20 years. Reasonable for some people to hope for an alternative treatment if they get a later recurrence, or to be old enough by then not to be so bothered.

    These papers may give you fuller picture - although some of them are a bit confusing.

    https://uroweb.org/guidelines/non-muscle-invasive-bladder-cancer/chapter/disease-management

    https://pmc.ncbi.nlm.nih.gov/articles/PMC2792453/

    https://pmc.ncbi.nlm.nih.gov/articles/PMC4944627/#:~:text=to%20prevent%20recurrences.-,Intravesical%20Bacillus%20Calmette–Guerin%20(BCG)%20has%20been%20the%20standard,develop%20recurrence%20of%20their%20cancer.

    https://www.frontiersin.org/journals/urology/articles/10.3389/fruro.2024.1309532/full

  • Great post Zhou, long may your all clears continue. Garviv

    Garviv

  • Hi Teasswill, 

    please be mindful of what you are posting.. when I read your post quoting percentages of people having success with BCG treatment my heart sank. I’m having BCG treatment and read your post as only having a 30% chance of it being successful long term. 
    to then read that your information is 14 years old and you don’t know if the treatment has progressed in that time has angered me to be honest. I’m sure you have meant no harm but it’s outdated and misleading. If in the future you are going to post information maybe start it with “back in 2011 I was told”  I’ve not opened the links you have put up as I’m not going to send my mind into overdrive… sorry if this post sounds harsh but I’ve had no sleep.. 

    a very tired and anxious Nigel