Hi guys, so has anyone been thru this operation? How long for recovery? Does the external bag deal with just urine or fetal matter as well? So many more questions, but this is a start, saying I'm scared would be an understatement.
You're absolutely right, the impact for men is more significant. There are ways to address this - you should be allocated a specialist nurse to answer all these sorts of questions & help you through adapting post surgery. All your questions are valid - it's such a great unknown.
At the time, it all seemed a huge event, but looking back now, just a short episode in my life. Sounds like you have a good level of fitness & that will all help with recovery. best wishes.
As you can see I am a Biker, and to answer your question. I had my Prostrate removed around 6 months ago while I was undergoing Bladder cancer treatment. I can assure you that you can ride your bike as normal (I am 71 and still do). As to the "Intimate" bit, You will still be able to get an erection and still feel all the sensations including orgasm but you will not actually ejaculate. My wife says she still gets the thrill but is not so messy!! Good Luck and keep rubber side down. Biker Bob
My husband is just recovering from radical cystoprostectomy. He is 7 weeks post op. He is also a biker. How long was it post surgery that you were able to get back on your bike?
I'm only just starting chemo, next week, to shrink the tumour, 6 weeks in total, then they will remove my bladder, its scary stuff, so well done to hubby. I've not been able to ride since Xmas, it's frustrating as well as painful. The bloke to ask is Bikerbob, he's been there and seems really positive with his progress and what can be achieved. All the best to hubby, tell him keep positive and hopefully we could have a ride together, there's a goal for us both..
Hi Kevv, sorry to read that you have been given such shocking news. My husband was diagnosed nearly 3 years ago at age 55 and was initially told he would need bladder removal. He has been lucky to manage with other treatment as despite what they initially thought, it wasn't muscle invasive. He has had one recurrence and has just had some more BCG treatment. The spectre of cystectomy hangs over us and he feels very much as you do. He was told that they do always remove the prostate and the consultant said 'your sex life will be over' although I have since read that they can in some cases do nerve sparing surgery so you could ask about this. My husband also rides a motorbike and worried that they things he enjoys wouldn't be possible but I did some research and I think once you regain your strength, you can do pretty much what you did before except things like very heavy digging. My husband does a skilled manual job and will retire if he does end up needing the cystectomy. You might be offered a choice of a neo bladder as you are a younger patient. There is a charity called 'Fight Bladder Cancer' that I have found quite helpful - they have a lot of booklets you can download including really detailed guides to cystectomy - what to expect. There are also details of clinical trials open and real stories of people who have had bladder cancer and how they have got on. Wishing you all the best and to your wife - it is just so frightening and overwhelming at the start but it can get easier once you have a clear plan.
Encouraging words, I do hope hubby gets back on his bike again, its not only the things we enjoy, but these are the things that make us,,, us..
I start chemo (to shrink tumour) next Monday, I absolutely hate hospital, there full of sick people, bless them, so I think it best to just take it one day at a time.
I also have an appointment with surgical team on Wednesday, so I suppose they will inform me of their intentions, whether I agree to them is another matter, I really do not want a removal.
Wishing both of you, from my heart, all the best..
I wondered if, when I was post op, I would feel any different - mourning lost bits, being a different character. As far as I'm aware, no change at all, bar the obvious scars & new toilet habits. I'm still 'me' and doing all the things I enjoy. Didn't feel any need to do fundraising/ change the world or anything like that. There is the recovery period to get through, then just getting on with life.
Kevv, you sound just like my husband! He cannot bear going to the hospital and has also said on a few occasions that he won't agree to the cystectomy as he fears the surgery, stay in hospital and what he will be like afterwards. It is really helpful to read other people say they have come out the other side with a good quality of life. I hope things go well for you and that you are well looked after - you should have a specialist nurse that can answer any questions / worries that you think of after any appointments. I would ask about this if it isn't mentioned - try to get their email and phone number as they have more time to talk and can be quite reassuring in a non consultant way.. Take care.
