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.
Anyone else have experience of being diagnosed with aggressive bladder cancer at an earlier age & chose earlier cystectomy?
Thanks
I was also looking at these papers, both retrospective long term follow ups - caveat is obviously that these look at individuals diagnosed decades ago so treatment recommendations have changed and therefore things might be different now. My assumption is that expert specialists will have more accurate info but there really is a lack of good reliable data out there!
Shahin et al 2003
and Thiel et al https://pubmed.ncbi.nlm.nih.gov/29905887/
Similar findings, BCG does delay and reduce recurrence but not for high grade (T1G3) cases.
I’ll follow up if I find further or better data.
Good luck everyone, tough choices, in the end each of us need to decide what risk we’re willing to take and regardless, there is unfortunately no clear way to predict outcomes for each individual.
xx
Hi. My apologies for delay in responding. T1G3 is a high risk pathology regardless of the size. The chances of recurrence/ progression are more if there is other finding, e.g. CIS, variant pathology etc. The recent NICE guidelines do mention size and number of tumours in the prognosis section, so I assume there is a link between these variables and prognosis. I wish you all the best with your decision.
Hello everyone,
I have a question if ok for anyone who has had a RC. My husband is 14 months post op (RC with Iliad conduit) doing well but we ve noticed a eGFR value was 63 and creatinine value of 114 on his recent blood test. This is worse that a few months ago and I m concerned about a decline in kidney function. I read this can happen after RC. I d be very grateful for any information. Thank you.
Hi,I had a cystectomy in 2019 and was told that renal function can decline afterwards.I had normal kidney function blood tests until last year when there was some drop in GFR and creatinine.I also had hydronephrosis in both kidneys in 2022 but by this years scan the swelling had gone.My urologist said that can happen post op.I hope they will monitor your husband’s kidney function closely.Best wishes Jane
I had bladder removal in 2020 and have never had a kidney issue until now, where recent blood tests have shown some potential issues. However, I need a repeat blood test in the next week or so to check again. My creatinine is higher than normal as is my eGFR. I’m just going to wait to chat through with my doctor.
Sarah xx
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