Radical Cystectomy - Yes or No?

I have been undergoing checks and treatment for the last 4 years. This has included flexible and rigid cystoscopies, a course of mitomycin followed by further checks. Then in March 2021 following a biopsy I was told that I now had Grade 3 cancer and removal of the bladder was being considered. It was decided at that time, by my consultant, that perhaps that was a bit drastic and so a course of BCG was agreed. Unfortunately, following the BCG course, checks have shown that it was unsuccessful and I have CIS.

My consultant has now recommended bladder removal and seems to be pushing ahead with this. At the moment I feel I am being driven towards this without any other options being discussed. Can anyone offer advice on the options to discuss and/or the consequences and after effects of going ahead with this?

  • HI  and welcome to the group, although sorry to hear your BCG treatment was not successful. Bladder removal is usually considered to be the second line treatment where BCG fails, however, we know some people prefer to try again or try alternative intravesical chemo. I'm sure others will be along to share experiences. Best wishes.

    Best wishes to All,   rily.

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  • Hi Pringle35,Welcome here.I don’t think you should feel pushed towards cystectomy without knowing all your options.It might be that cystectomy is the only choice of treatment now.There is always the risk that your CIS might spread.I had an aggressive form of muscle invasive cancer so I had to have a life saving cystectomy.Your consultant needs to talk with you and go through all the options,risks etc so you can make an informed decision.Best wishes Jane

  • You certainly need to be fully informed before making a decision, all the pros & cons, risks & benefits, what is entailed etc. At the moment I think your options are continuing with checks & perhaps alternative immunotherapy (worth asking if there are any research trials that might be relevant), or go ahead with surgery.

    The problem is that having already had treatment but still having recurrences, especially CIS, there is a risk that further recurrences could be muscle invasive. This would definitely mean more aggressive treatment - chemo/radiotherapy or chemo plus bladder removal. If not spread beyond the muscle this is still potentially curable. There is also the risk that the cancer can jump & spread & become incurable. No-one can say if this will happen or not for you. 

    On the other hand, bladder removal is not without its risks & side effects. Each of us has different priorities & reasons for choosing which path to take. You will find people who have chosen to persist with BCG or similar & are doing OK or at least staved off surgery a little longer. Those who have gambled & lost are not here to tell their stories. 

    I had RC 10 years ago, happy to answer any questions about that.

  • Hi

    Your consultant should explain other options or why there are none.

    I want to assure you that life can be just as good with a stoma. I chose this option because of the infamous reoccurrence of bladder cancer.  I did not want chemo or constant invasive stuff 

    I have 2 scans a year. I love Basil my stoma because he saved my life.

    I wish you all the best and please keep us informed 

    Love Inanna x

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  • Thank you Teasswill.

    Could you give me some idea of your experience immediately after surgery? How long did it take to recover? What problems did you experience? Is there anything you can't do now that you could before the surgery?

    I understand that everyone is different but some knowledge of your experience might help.

  • Thank you Inanna, it's good to know that there are success stories after this surgery.

  • There are absolutely success stories. I had mine as part of much larger surgery so I live with 2 stomas and having had everything in my pelvis removed, I can’t think of a single thing I cannot do now that I could do before. My life is completely normal, I go abroad, go swimming, live just as I did before, with the only difference being I live now with 2 bags attached to me. I didn’t have bladder cancer, but aggressive spread all over my bladder after my cancer recurred. 

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  • I’m also living happily with a stoma.The cystectomy was a big operation and not without complications.I found the recovery period tough.It took 8 months to feel much better and I don’t have much stamina since the surgery.Overall though I have a good quality of life.Best wishes Jane 

  • Thank you SarahH21. It's good to know you can do everything you could before surgery.

  • Hi winkers60. The recovery time is one of the things worrying me. I have read that it can take from months to years to recover and that some never fully recover.