Radical cystectomy Vs BCG treatment choice with aggressive non-muscle invasive bladder cancer

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I’m aged 52, went to the GP the day after peeing Rioja in the sports hall on 19th April. The primary tumour was successfully removed mid May; deep into the connective tissue but not into the muscle, but unfortunately the histology results were as disappointing as possible: high grade cancer, large tumour removed (>3.5cm) with the extra bonus of CIS flat cancer (meaning multiple sites of bladder cancer) - all of these lead to the aggressive nature of this bladder cancer, leading to the risk of spread. 

Before the MDT meeting me & my wife had done our research; there’s a few research papers out there suggesting longer survival rates in patients with CIS & high grade cancer by having early cystectomy, rather than BCG first & cystectomy later. Also, I’m sure I don’t need to tell anyone on this forum board that BCG isn’t a walk in the park! 1/3 of BCG patients don’t complete the 3 year treatment course due to tumour growth, 1/3 complete the treatment course & 1/3 fail to complete the treatment due to the dysuria side-effects!

No more erections for me! I spoke to BRI on Tuesday asking if I could be listed for the radical cystectomy with ileal conduit (neo-bladder not appropriate with the risk of cancer spread) Op; basically if your primary consideration is living the cystectomy is a no brainer (if I have the bladder removed now my odds are very good; 90% chance 5 year survival / 85% if they find some microscopic cancer cells in the muscle lining of the bladder when they analyse the whole removed bladder). Most people choose BCG treatment in the hope they won’t have to have the bladder removed, with the associated body image / urostomy bag problems, loss of sexual functionality & risk of operative morbidity. However, in my case BCG treatment at best would probably only kick the can down the road for 3-5 years until cystectomy was needed (with a reduction in positive outcome from 90-75%)!
4-6 weeks until Op with 3-4 months recovery.Fingers crossed

Anyone else have experience of being diagnosed with aggressive bladder cancer at an earlier age & chose earlier cystectomy?

Thanks

  • Hi  and welcome to this supportive group although sorry you find yourself here. A lot to take in before making your decision. I went a different route, but many here have had removal and should be along to share experiences. Best wishes.

    Best wishes to All,   rily.

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  • Hi,

    Welcome to this group and sorry to hear about your diagnosis and situation.

    My cancer was high grade 3cm, non muscle evasive, but wasn't deep into the connective tissue, but had what the surgeon described as carpeting. There was a discussion with my surgeon about bladder removal, but was more to give me an option to possibly look at in the future and something to be aware of.

    I've gone down the BCG route so I'm not really able to offer any advice to your question about early cystectomy.

    I was 51 when diagnosed.

    Wishing you all the best.

    Trevor 

  • Hi,Welcome to the group.I hope you will find it helpful.I had a cystectomy in 2019.Best wishes Jane 

  • Age 52 I am not sure your characteriation of BCG treatment is really accurate, as many are treated successfully. Leo 

  • I also was diagnosed with high grade cancer (last August) which was not muscle invasive. It was removed in August and I have undergone the six initial BCG treatments and three follow up treatments (April). The BCG treatments are not a “walk in the park” but thankfully the side effects at the time of treatment (stinging or burning, urgency, flu like symptoms and at times penile pain) generally did not last longer than one to four days after the treatment (for me). After finishing the treatment, I continued to improve albeit it seemed slowly at times. For me, the removal of any body part will be only the last resort. On a very positive note, I underwent a cystoscopy a few days ago and was watching the screen as the scope travelled through the urethra into the bladder. My urologist is excellent at this procedure as I feel almost nothing as he inserts the scope. I got to see my beautifully clear bladder wall which brought tears to my eyes (of gratitude). The BCG treatment is not always easy but this positive outcome for me made it more than worthwhile. Please give serious thought to this wonderful potential benefit which has outweighed any cost at least for me. You are still a young fellow (at least compared to me; I am 61), and there absolutely is good reason to hope. 

  • Hi. I’m in the same dilemma and have posted about it here a few days ago. My diagnosis is T1G2 high risk, but no other features such as CIS. Being a medic myself, I have had numerous discussions with my urology and pathology colleagues and everyone has recommended BCG after my 2nd TURBT as no one wants to remove a bladder unless absolutely indicated. But I think you’re right, any adverse features such as CIS, lymphovascular invasion or sarcomatoid pathology would necessitate a serious consideration of RC as the results of early intervention are better than late surgery. However a RC is a major life changing operation with risks and shouldn’t be taken lightly. All the very best for you.

  • Thanks Rily

    Appreciate your feedback.

  • Thanks Trevor

    Best of luck with your BCG journey; hope it stays successful. One of the consultants I saw described my carcinoma in situ as carpeting; might be worth an ask at your next appointment?

    Best wishes 

    Gareth

  • Thanks Leo

    I can only assume you’re correct, but the statistics I quoted were supplied to me when I asked consultants for BCG dropout numbers (I’d read a few research articles quoting very high drop out rates) Truthfully, the drop out rate doesn’t particularly worry me rather the problematic realistic need to carry out a cystectomy 3-5 years after BCG treatment (in my particular scenario) with less chance of a positive outcome.

    Thanks

    Gareth