I've posted this on the Fight Bladder Cancer forum as well but I'd really appreciate feedback from you all here (I think some of you may post there too).
I'm due to have an RC and neobladder on 7 October. I'm 58 and G3pT1b and have decided not to go down the BCG route for a variety of reasons. I go from being relatively calm and resigned to freaking out. I'm having my op at the QE in Birmingham and I have an excellent surgeon with loads of neobladder experience.
I'd really like to hear how other women have managed with their neos as I know that it can be more difficult for us to get good continence. How have you found this?
I'm also worried about having to self-catheterise - how the hell do you manage it? I'm worried about pain as much as anything else - my cystoscopy was a bit painful at the start.
I have had previous surgery for a neuroendocrine tumour 3 years ago (all women's bits plus appendix whipped out) and this does mean that, when my surgeon has had a rummage around, a neo might not be possible in which case I will have a stoma. I'm not too bothered about this, just want that bladder whipped out.
Hi Warrior Scarlet. I can't help with your question, but would just like to welcome you to the group, and I am sure someone will be along to share experiences. Best wishes.
Hi, I was 57 when I had my neo, 9 years ago, also opted for immediate surgery rather than BCG. Sounds as though you are going into it well informed about the difficulties, which is good. My surgeon was very encouraging, that someone like me - 'young & fit' would do well. I was determined to be a star pupil, but it didn't go quite as I imagined!
I expected the initial incontinence, thinking it would be a steady trickle, but actually each time after voiding I had perhaps an hour of continence while neo filled & then leaks in spurts. The first few days of a 2 hourly schedule (3 hrly at night) were a bit grim, quite painful as neo filled. After that I was encouraged to sense fullness & try to hold out a bit longer each time, to gradually enlarge neo. The time to fill will vary according to intake, activity etc. My strategy was that once I started to feel full to stay seated or standing & not move too much, then when it felt too bad (or too wet), to slowly walk to the toilet. Triggers for leaks are any movement that stresses the abdomen, so I cultivated a method of pushing myself up from a chair using my arms or bending knees to reach down anywhere low. District nurse organised an incontinence pad supply, but that was only 4 per 24 hours, so I used an online supplier to buy more. Much better options (& cheaper) than High street stores. Gradually over a few weeks, i got up to desired capacity, but still tended to leak when nearly full. That diminished over a few months & I reduced pad capacity until eventually just using liners for reassurance.
Nights are slower to improve & may never be that good. I hate setting an alarm & rely on sensation, but quite often that was a leak, sometimes a big one. Neos can continue to improve function in subtle ways for around 2 years post op. These days when I'm perhaps not drinking quite so much (approx 2L daily rather than 2.5L) I do seem to wake about the right time & am reasonably dry, but always wear a modest pad to cope.
Please don't worry about self catheterising, the caths are narrow & self lubricated. it's a bit strange at first but simple & totally pain free. Many hosp require you to learn to do it to check any residue after voiding. Women do have a fairly high risk of needing to self cath to fully empty.
Learning to void can be tricky - you need to be relaxed about it and try different positions & muscles. For the first 6 weeks I did really well emptying, albeit with some difficulty. Then as I got more active, I gradually lost the ability & eventually had to rely on self cathing to fully empty. I don't regard it as a problem at all, except having to remember to take supplies with me. Sometimes I can empty a little, maybe up to half, but then self cath the remainder. I can last around 4 - 6 hours between voids depending on intake, activity & so on.
Everyone is different in how they manage with neo training, but hopefully that's given you a flavour of what to expect. I'm happy to answer any specific questions.
Hi Teasswill - thank you for your detailed reply, it’s given me a really good idea of how it might go. Oddly the catheterisation was worrying me as much as the incontinence!
The self cathing is a common worry, especially when you've experienced having cysto/TURBT. For females, if you can manage a tampon, self cathing is just as easy - if not easier.
I can’t answer all your questions but I’m 8 days post having my neo bladder completed. I felt the same about you re the pain, but was told before the surgery it was not a particularly painful op (I didn’t believe this), but it’s really not. The first couple of days are uncomfortable and I needed painkillers every couple of hours. By day 4 I was only on paracetamol. I will say it becomes a bit more painful when the bowels start to move, but just like a tummy ache or period pain. I found the drain they put in was the most painful thing (turns out it was about 25cm long, I’m only 5ft 4”) and it was difficult to move around with it. Now it’s removed I’m up and about with no major issues.
whilst moving in the first couple of days is really hard, I was very dizzy, the more I moved the better I got.
I’m going home today with 2 catheters in a super pubic (in through the tummy) and a normal one. These will be here for a couple of weeks until they do the die test to make sure it’s all healed before removing them.
It’s early days in my recovery, but this has been nowhere near as bad as I thought it would be.
Was that robotic surgery? I had open surgery, but the main wound wasn't at all painful, like you, it was the stents & drains that were uncomfortable. Initially because of leaks, but later because moving tugged at the stitches holding the tubes in place. There were all sorts of twinges for months later as the internal healing continued.
Hi H - thank you so much for taking the time to respond. It's very helpful getting news from the coalface and very reassuring. I hope you're doing ok at home.
