Bladder removal

Hello Kevv

Am sorry to see that you need to have an operation to remove your bladder. I can understand that you have lots of questions and its all very scary. Surgery is never great and I was really anxious before I had my surgery for my cancer.

Hopefully someone on here who has had the same surgery will get back to you soon but in the mean time I have found a bit of information that may help. 

Cystectomy (bladder removal) - surgery for bladder cancer | Macmillan Cancer Support

Hope that this helps

Jane

Hello Jane, thanks for replying, I will have a look via your link. What I do know is, the tumour in my bladder is muscle invasive, but I had a scan on my lungs Sunday, to see if it has spread, hopefully not. That being the case, they want to chemo it, then remove the bladder, never saw this coming tbh.

It is daunting to be faced with this unexpected prospect. Plenty of us here have had the surgery & living great lives. It is tough, takes several months for full recovery, but not as bad as you might imagine. You may have an option of a reconstruction (internal replacement bladder made out of intestine) or the usual stoma & external bag. Either way, it is only urine that is collected, bowels should operate as normal (though can be a dit disrupted due to the surgery). 

You might also have an option of chemo plus radiotherapy instead of surgery. So plenty of question for you to ask your medical team. I had my op (with reconstruction) nearly 11 years ago. Happy to answer any specific questions. Best wishes.

Hi Kev. The CT scan is standard, just to rule things out and give them a better picture of what they are dealing with. I went the alternative route for muscle invasive which is radiotherapy and still have my bladder. If you are going for chemo, you will have plenty of time to gather as much information as possible. Best wishes.

You guys are all so helpful and brave, thank you, excuse my naivety, my heads still in a spin. Trying to remember what I've been told so far, no to radiotherapy, too dangerous, no reconstruction, not sure why.

I'm only 60, not that old right? Always gone to the gym, I don't drink alcohol, I eat well, but it is, what it is right.

Vanity and capabilities along with survival rate are a concern. 

I have an appointment with the surgical people over in Exeter in a couple of weeks, my local hospital is Torbay (I live in Brixham) 

Just need to go in prepared.

Hi Kevv,It is a shock when they mention bladder removal and I’m sure most of us felt scared at the thought.I had mine removed in Sept 2019.Recovery rates vary but it usually takes a few months to fully recover.I felt better after 3mths and 8mths post op was able to go back to caring full time for my disabled mum.The external bag is for urine.I have one and haven’t found it hard to adapt to.There is a lot to think about but you will get a chance to discuss everything with the surgeon beforehand if you do need a cystectomy.A few of here have had this op and can help with any questions and support you through it.Jane 

1. Thanks, yeah I have been told it will be a lengthy process, but I've never walked away from a fight in my life, so I'm not going to start.
2. You guys all sound so brave and informed, I've never felt so "not in control" and ignorant. 
3. Thanks guys..

I was 57 when I had my op - deemed young. No obvious cause, but my brother had had BC (low grade) some years before. I actually chose the op for best chance of cure (among other reasons). Then I looked on it as a project, making preparations etc, planning post op clothes, entertainment, food stores, short local walking routes. 

Lovely part of the country to live. Hopefully by the end of the year you'll be well on the road to a new normality. 

Thank you, I think I am getting use to the idea, ( it's better than the alternative right?) I'm just struggling getting my head around the logistics of of it, don't laugh, but things like, can I still go swimming or have a bath, go to the gym, ride my motorbike..

From what I have read, there seems to be a good chance of other stuff being removed, like prostate, stuff that will affect my ability to be intimate, not such a biggy, I have discussed this with my wife, (we have been together since we were teenagers) and bless her she said it has no impact, she loves me. But still, it worries me.

It's good to speak to others, who I'm sure must have asked themselves similar questions, so thank you for your reply 

Kev

Hi Kevv 

I had my bladder removed more than 3 years ago along with many other body parts, and yes, all of the things you mention are still completely possible!

I also have a colostomy, but still can have a bath (with or without the bags on) and go swimming-of course with the bags on.

You can have a completely normal life with this, and you are right-it’s much better than the alternative. I notice you asked in your first post if the bag was just for urine, and the answer is yes to that. 

It’s natural to be apprehensive about the thought of surgery, and it takes time to recover, but you’ll get there. My father in law is waiting for his surgery to remove his bladder and prostate at the age of 77, but he’s actuallyjust delighted he has this option. 

Ask as many questions as you need to-we were in your position of not completely knowing what this would be like, and you’ll get lots of advice and reassurance from those of us who have been through this.

Sarah xx