Radical Cystecomy

DME54 . Hi Deb. Sorry to hear what you have been through. It must have been really traumatic for you to find out how it has progressed. I have not had RC so not much help, I am sure others will be along to help and share experiences. Just wishing you well going forward and there will always be lots of support for you. Best wishes.

Hi from France Deb,

My husband was diagnosed with muscle invasive bladder cancer in May 2022. No previous history of bladder problem, no smoking.Urologist proposed either chemo plus radiotherapy or chemotherapy plus cystoprostatectomy. We chose the second option. Unfortunately after the first chemo he developed renal failure and chemo was stopped. He went through a 11 and a half hours intervention on the 12th of August. We were very anxious because he had a serious heart attack in 2011 (after an intense physical effort/cycling). Urologist built a neobladder. One hour after the end of the intervention I met him in intensive care unit. He had no pain (excellent pain management) and could talk rather easily. Catheters everywhere, this might have been impressive, but I'm a doctor. He developed some complications later and left hospital only three weeks later. Lost 9 kilos. We used to walk everyday. First 100 meters, then 200 and after two weeks one kilometer. He used to have 5-6 light meals a day. 

Analysis of the bladder did not show any cancer anymore: the endoscopic resection combined with only one session of chemo killed all malignant cells. Fifteen months later he has a normal life.

Concerning the toxicity of the chemo you should discuss with the oncologist again. Some chemo are indeed cardio toxic. Therefore my husband received cisplatin plus gemsar, a combination which is not cardio toxic. He developed renal failure because of insufficient hydratation. 

Before the intervention my husband talked with patients having either a  stoma or a neobladder. After a few months tall were satisfied.

Neobladder seems more natural but it is necessary to stand every 3-4 hours during the night (otherwise the neobladder will expand which is not good at all). If you are a heavy sleeper, then choose the stoma. With stoma you can swin with adequate cloths, you can practice all your favorite activities. Don't forget that the surgeon can not promise he will build a neobladder (if you choose this solution) because it depends on anatomic configuration which he will discover only during the intervention (length of bowel vessels: if not enough it is not possible to move a part of the bowel down to connect the piece of bowel with your urethra).

Best wishes

Catherine

Hi Deb,I’m sorry to hear your cancer has turned muscle invasive.Neo bladder wasn’t thought suitable for me so I have a stoma.You can still lead a good life with one.The best thing for me about stoma over neo bladder is being able to sleep through the night without constant bathroom trips.Pre op I was either unable to go or going every few minutes and the pain was terrible.The recovery from cystectomy does take time.I found the first few weeks the toughest as I was so tired and weak.After 3 months I felt very much better but I didn’t go back to work until 8 months post op.I haven’t had any problems adjusting to life wth a stoma.It was a life saving op and I’m cancer free 4 years on.There will be support and advice for you here to help.Love Jane x

Hi Jane,

Many thanks. I am totally devastated and petrified of the thought of going through this surgery. Its consuming my every thought at the moment.

Hi Catherine,

Many thanks for your reply. I thought about neo bladder initially, but am leaning more towards stoma. My mum had an ileostomy for 49 yrs and i think thats what put me off at first. I have read about  some of the disadvantages with neo bladder but wasnt aware of needing to stand up in the night. I know a bit about using stoma bags and how to fit them through my mum so im not totally naive about it. Im just terrified as i never envisaged getting to this point all of a sudden. It was just dropped on me after chasing for bcg for 2½ yrs. Im struggling to get my head round it.

Hi DME54 

It’s natural to be very scared-we all are facing this. If it helps to give any reassurance at all, I had my bladder removed as part of larger surgery which included 2 stomas (and more) in March 2020 and have not had any issues since then.

I have a urostomy-easy to deal with because I can see it, no need to get up to pee in the night, never had a UTI, and it has never given me any problems apart from the odd leaking bag! I didn’t have a choice of a neobladder, but I’m glad I have a urostomy and would have chosen that in any case, as I also have a colostomy, so might as well have 2 bags! 

I didn’t really think about the surgery or the whole process but focused on the end result of getting rid of my cancer which it did. My father in law has muscle invasive bladder cancer and prostate cancer, and had his bladder removed in September. At 78, he is managing very well with his stoma, and although he has some other issues, the urostomy is not one of them.

Sarah xx

Hi rily,

Thanks for your reply. I am devastated the way they dropped it on me. I won't know till next friday, when they plan on doing the surgery. Not sure if before or after xmas is best. On one hand i want it over with but on the other i don't want to miss xmas with all my family and grandkids incase i'm too weak to take part. First time we've all been together at xmas for 9 yrs.

Best wishes

Deb

Hi Sarah, 

Thanks for your reply. Glad to hear you and your father in law are doing well. It was such a shock for me on wednesday when i went to see the oncologist. Its a lot to take in. I know its going to give me a life instead of the alternative.its just so scarey and devastating.

Best wishes

Deb 

Absolutely it must have been an awful shock for you, Deb. I knew for quite a long time it would be in my future so that probably made it easier for me. Going from non muscle invasive to muscle invasive and having had no previous treatment must have been a tremendous blow for you and a lot to take in.

My father in law could not have chemo due to his heart issues and it being too dangerous for him, and he had no treatment for either of his cancers in the 7 months since diagnosis so went straight to the discussion about bladder and prostate removal. His priority was getting these cancers out, so agreed immediately as there was no other option for him. 

I would be guided by your specialist on timing of the op-mine had to be as soon as possible. If it’s before Christmas you would still be in the early stages of recovery so things might be difficult for Christmas. 

Sarah xx

Hi Deb,My approach was similar to Sarah’s.I was in so much pain I just wanted the bladder out as I had no quality of life in the run up to the surgery.You have had a huge shock and it’s not suprising that you feel devastated and scared.Stay on here and everyone will try and support you through this.Love Jane