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 am only able to go by my tests right now Jane, until I speak to my doctor. It says G3 CKD on my results which initially scared the pants off me, but I’m holding onto the word “borderline”!
I cannot get in for another blood test at the moment as there are no slots available, but also waiting for the surgery to call back to arrange for the district nurse to do the blood and urine samples at home as I’ve got no transport. One thing after another!
Sarah xx
GP was supposed to call me on Monday, but still waiting. Can’t get the wheelchair into the car now, and anyway no driving allowed at the moment so I’ve not got my chauffeur. I have an appointment at the Surgery on Saturday with a GP, but not sure how I can get there! I can understand how difficult it must have been with your mum, and like you, I’ve had to insist on a home visit for the tests at least.
Sarah xx
Exactly! We are already relying hugely on a couple of neighbours to pick up shopping or give a lift to hospital appointments and they are brilliant, but we hate needing so much help at the moment! The receptionist at the gp was telling me to go to the walk in centre for tests-it’s 10 miles away! They don’t listen and it drives me absolutely crazy.
Sarah xx
We are used to managing things by ourselves, but when the “carer” goes down as has happened to us, life becomes very difficult and stressful. I realise even more how little I can do for myself with being disabled. It’s a lot for those who support us too.
Sarah xx
