Decision time

Hi Kathyp123 and welcome to the group. I had Gem/Cis which also reduced my mass. I was then given the same choice. I opted for the chemoradiation which has so far been good to me. Six weeks of daily radiotherapy with a chemo pump on weeks 1 and 4 ( 5FU/MMC). The chemo helps the radio work better. I had no real problems during treatment. Fatigue set in for a few weeks after treatment finished with erratic bowels for a few weeks but this passed. My treatment was over 10 year ago and I believe the latest machines are more accurate and efficient than the ones I had. You need to weigh up both options and choose the best for you. My choice was personal. Others here have had removal and should be along to offer their stories. Feel free to ask questions about anything. I hope all goes well whichever way you go. Best wishes.

Hi Kathy,

I had the cystectomy in January 2023 after Gem/Cis and then some immunotherapy  (nivolumab) after the op. If you click on our names you can read our bios which give more details. 

Now, 3.5 years later I live normally, change my stoma bag when needed and give it very little thought otherwise.

It took me a while to get fit enough to return to my usual exercise routines and indeed some are no longer appropriate or possible as a result of side effects from the treatments. However I'm still fitter than many 73 year old women and very pleased with the result (as are my family).

Hope this helps.

Latestart

Thankyou, that's so very helpful and so pleased you've had such a positive outcome.

Kathy

Hi Kathyp123.

Firstly I am an 80 yr old male so my circumstances are somewhat different to your own but will explain how I came to my decision to have my bladder removed.

After Turbt I had a meeting with my consultant who explained that the tumour was large and irregular with several associated red patches on bladder wall at the margins of the urethra. It was not muscle invasive but he gave me 2 weeks to decide to immediately start immunotherapy or major surgery to remove bladder, prostate and lymph nodes. He would not make the decision for me but gave me information to read to help with the decision. I was in a state of panic and started reading all I could about bladder cancer and the possible treatments. This forum was particularly helpful and informative. Long discussions then with wife and family who reminded me that the wife of an old school friend had been having treatment for bladder cancer. She is a retired nurse so I got in touch. She explained about BCG which for her went on for 2years but was not successful and ended with a cystectomy. Her comment was why did I go through that only to have major surgery anyway. 
More food for thought. 78 at the time with a couple of heart surgeries in the past AND an enlarged, benign but troublesome prostate So would I be fit enough for major surgery but more to the point if immunotherapy was unsuccessful would I be fit enough for major surgery in my 80’s.  More sleepless nights and family discussion. Read more about living with a stoma bag and the prevalence of prostate cancer in older males.

Eventually, decision made. Have it all removed, prostate and all then more checks and ok given for robot assisted radical cystectomy. Two and a half years later I’m well, active walking 2 or 3 miles daily. Surgery took 2-3 months to get over but over and done with. All follow up scans clear and other than a daily 15 minute change of Stoma pouch no problems to date.

That was my decision. It’s a personal one and every case is different but I was glad of this forum, friends and family and a consultant who took time to explain without pushing me in either direction

Thankyou so much for the info, it's so helpful. The uncertainty of the side effects of radiotherapy have quite unsettled me so I'm finding it quite hard to make a decision. Think I need to do a pros and cons list for both

Kathy

Thankyou so much for your reply Stapled, it's so good to hear people's stories and how they came to the decision they did along with the support of family, friends and the medical team. So pleased everything worked well for you.

Kathy 

Hello Kathyp123, I went along the same route as Rily in 2018 albeit I experienced 2 Superficial Recurrences which were treated with BCG Instillations. Last cystoscopy in May 2024 was clear. Whatever decisions you make I hope all goes well.

Thankyou Garviv, it's good to hear the positive outcome of your radiotherapy treatment.

Kathy

Hi Kathy,I don’t envy your decision it must be difficult,I had a cystectomy but faced a very early death without it so no choice really.I have never regretted the surgery and am still here nearly 7 years later.Best wishes,a pros and cons list is a good idea.Love Jane xx

Thankyou Jane, you sound very positive about your surgery which for me is very encouraging. I expect it just takes a bit of time getting used to doing thing differently

Kathy