Hi Suze02 and welcome to Cancer Chat.

I'm sorry to hear your partner was recently diagnosed with bladder cancer and for the lack of information the doctors have been able to provide about his diagnosis. This must be very upsetting, and frustrating, especially when he has to decide whether to go ahead with the bladder removal.

I really do hope you receive some support and advice from our members soon but if you or your partner would like to talk things through with one of our cancer nurses, you can do so on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They will do all they can to answer your questions and help shed some light on his situation.

I'm not sure if you have come across Fight Bladder Cancer before, but they are a bladder cancer charity run by bladder cancer survivors and their families. They will definitely understand what you're going through at the moment, so don't hesitate to reach out to them at this difficult time.

We're thinking of you Suze and sending all our support your way.

Kind regards,

Steph, Cancer Chat Moderator

Thank you, you’re very kind.

Hello

My partner has undergone bladder removal surgery. Consultants deemed this surgery imperative to prevent recurrence and later risks. We also faced lack of information and communication at times, but being on the other side of the surgery some things make more sense. I can try and answer any questions as we did a lot of research and have had the same fears and asked the same questions you no doubt have. Best regards 

Hello Alison, thank you for your reply. My partner has now been told his cancer is a grade 3 so after doing a bit of reading I think he has decided that removal is probably best for peace of mind. He sees the consultant next week to discuss that and BCG. As I’m sure you and your partner will understand, he is still in shock and is concerned now about how quickly he will get a date for the op, the recovery and how he will cope with a bag. He’s also seen mentioned in a letter to another consultant that there is a lymph node noted in his stomach and a tumour on his kidney so he has questions about those too. It’s such a lot to try and take in. I just wondered how your partner is coping with his new situation. My partner is worried about whether the bags need constant emptying and not drinking too much liquid. Any experiences you can share would be gratefully received. Thank you. 

Hello

The unknown can be very worrying. Macmillan provided dozens of publications, that can be helpful.

He has a small stoma bag, capacity 300 mls, and empties every hour to 2 hours roughly, but at night he has a 2000ltr bag, or it can be discreetly used when watching TV etc. He has no problem with it, taking the larger bag to follow up hospital appointments if necessary. His employer has offered to make any necessary arrangements to help when he returns to work. We view it as all necessary to save his life and we're getting used to it all.

Drinking plenty of water is really important, a couple of litres per day. But take advice.

It's a big op but essential if a chance of cancer returning. There are 2 types, a new bladder can also be constructed, so no stoma bag.

Here to help if I can x

Thank you so much, the information helps enormously. I think it’s lived experience that’s needed right now. And we agree that being alive is way more important. Thanks again. 

My husband has aggressive grade but low stage bladder cancer diagnosed in March 2024. He had 6 BCG treatments but they have now seen a new micro papillary cancer so are stopping BCG. He will hear next week if he needs full bladder removal so your post has helped me feel less anxious for him. Will keep you posted