Salvage Cystectomy or Botox?

Hi Nick,A friend of mine has had Botox for her bladder but she has M.S not cancer.I know she found it helpful though.Her symptoms were severe frequency and urgency,her bladder didn’t hold much urine.The Botox calmed things down.It must be worth a try if your urologist thinks you are a good candidate.I think there is someone on the breast cancer board having Botox for her bladder.Love and best wishes Jane.

Hi Nick. Nice to hear from you, but sorry you are still having problems. I have searched back through the group and although people have mentioned having this Botox treatment, no one has reported any results. I hope it goes well if you go for it. Best wishes.

Yeah, not having much joy anywhere. If I have it, I will make sure to share my experiences. 

Hi nickfreckle, not had Botox my self (but could do with it in other places) my friends had it in her bladder for much the same as winkers friend, think she has it about every 6 months and yes it does work for her. I would say worth a try if nothing else. Good luck x

This is a very helpful post to me, my husband has bladder cancer and also had chemo (didnt work) radiotherapy (didn't work) which has left him with awful problems peeing.  I had not heard about the botox so am going to investigate for him.  He got up 8 times last night to pee just a few drops each time.  He is currently having immunotherapy.  My husband is also being offered the salvage surgery but his tumour needs to shrink before it is possible.  Also he does not want to have it!

Little update on this - have since been told that they will not be able to do my Botox nor my SC for the foreseeable due to Covid.

So get this - a fine waste of NHS resources - I had a bad cysto that was so painful it had to be aborted. I'm going in for one under general on Wednesday 23rd, so I said to them about having the botox whilst I'm asleep and they're already in there.

The answer was no, they cannot do it until they've been told they can do non-urgent procedures.

So that's another theatre booking, and the cost of the theatre team coming up in the future - small wonder the NHS is skint with no joined up, basic common sense thinking. Such b*ll*cks. 

Hi Nick. Sometimes you just have to shake your head and wonder. All these procedures now being put on the back burner of the back burner. Hope all goes well with your cysto. Best wishes.

It does seem illogical. I think it's because every procedure has a cost code & has to be approved by the local CCG. We had bizarre situation where I used to work, that if a Px was being treated for one eye condition but needed to be seen for another, we had to write to GP asking them to send a new referral. What a waste of resources - Lansley's legacy.

Gosh nick what an absolute mare, I would've thought that was urgent.  I offered to launch straight into the rigid cystoscopy at my new hospital but they said no, would've saved me the worry & them the money.  

I'm rather late in replying to your original query but I've had 2 women next to me in my hospital bed who've had botox in the bladder.  From what I could gather they'd both had it before, not due to bladder cancer.  

Hope you don't have to wait too much longer.

Hi Nick,That is so annoying and upsetting,you should be having the Botox.Best wishes for the 23rd.Love Jane x