Newly Diagnosed: Any women in this group who can provide info on Neobladder vs Removal of Bladder with Stoma

Hi Das,It’s definitely helpful to write down any questions you may have for your consultant and to take someone with you as an extra pairs of ears.I took my sister in and she was asking questions too and it was useful to have her input.It is so easy to get out of the appt and to forget everything.Ask to be copied into the notes so you have your own record of what is happening.Some people record their appointments so that is an option if allowed.I usually write a little note of who I saw and what was discussed on the top of my hospital appt letters and that acts as a reminder to go with follow up letters.These early days are not easy but I hope you are finding the group useful.Jane 

You’re very welcome. Anything you thing of don’t hesitate to ask.
Just to add I had the whole Shabang all in one go ie the hysterectomy, ovaries, bladder and part of vagina too where I seen you’ve already had a hysterectomy  

Hi, late reply from another neo (been away). I had mine 12 years ago, age 57. Was quite undecided, read up about both & spoke to 2 ladies from same hosp - neither option was that appealing for various reasons! I did ask about Mitrofanoff as an option - internal pouch like neo, but small opening, often in the navel, that has to be catheterised to empty. My surgeon advised against that, as more likely to need surgical revision. 

I tried a dummy stoma pack & though I could cope OK with that, but thought I would want to empty it more often (approx every 2 hours) than would be convenient with a long commute & demanding job. Wasn't keen on the initial incontinence with neo, but in the end plumped for that.

With neo, outcome varies between patients. You do have to be prepared for initial incontinence while the neo stretches to a good size. Initially there is a lot of measuring (time, input, output), 2 hourly voids (3 hrs at night) depending on local protocol. As capacity increases, continence improves - took me several months to be fully reliable by day. I was told to put up with leaks & hold on as long as possible - it was quite painful at first. Neo can continue to improve over a couple of years & I am well used to it's moods now! I can last around 4 - 6 hours between voids depending on time of day & intake. There is learning the sensation of fullness & technique to empty. Females run the risk of needing to self catheterise - I have to rely on that every void, can only empty half at best. Doesn't bother me at all, just need to remember to always carry some, and it's extra stuff to take on holiday.

Getting up at night has been the worst aspect for me - I hate using an alarm, so relied on sensation to wake me. I still wear a pad at night as that's not always reliable. 

There's no 'best' option, it's simple & straightforward vs a bit more complex requiring determination! Weigh up what will suit your personal circumstances best. Happy to answer any questions you have. Best wishes making your choice. Whatever you choose, you will soon get used to it & carry on doing normal activities.

Thank you sorry for my ignorance but if you did not set your alarm at night would that mean leaks? Or is it dangerous and you must to go every few hours.

Also for check ups etc how often do you have to go to doctor/hospital?

I am absolutely petrified and have read that females have more issues than males with both types of bladder reconstructions. Did you have much time to actually discuss everything and if so how many weeks after TURBT did you have the surgery? Did you have just one TURBT or more than one?

Thank you in advance. .

I set my alarm at night at first, when still 'training'. As I was leaking so much at night, I soon tried not setting an alarm, but the leaking woke me anyway! Yes, in general, it is important not to let neo get too large, or it may get floppy & difficult to empty. (hence a lot of measuring etc at first)  It was when mine got to good size that I stopped being able to fully empty, but I think that was because I was getting more active & neo was moving inside, not always in a good position to empty. 

Once neo had 'stabilised' & I knew I would leak when full, with consultant's knowledge, was given the OK not to set an alarm at night. I have got used to waking naturally, either from a leak, or because I feel full.

I am low risk follow up, had check ups (blood test, chest Xray, ultrasound/ CT) every 3 months for 2 years, every 6 months for 2 years & then annually. Now I am over 10 years, it's just blood tests & ultrasound annually. Follow up does vary according to local protocol & risk of problems.

For me, because surgery was my choice (as opposed to BCG) there was no haste and I had plenty of time to consider options. From first TURBT at end of April, second TURBT in May, decision made for surgery in July (and other tests along the way), Aug decided neo, it was then 1 Sep when I had the op. I was warned that they might open me up & find neo not possible, so like Dewdrop, I was marked up for stoma.

When they talk about females having more issues than men, it all depends what you mean by an issue. Men do seem generally to get control faster, and less risk of needing to self cath. As I say, I have to self cath, but I don't regard that as a problem.  I'm not aware of any other differences. In many ways, my new plumbing is better than the original as is more predictable.

The idea of surgery is daunting - but having chosen it, I have no regrets. Remember that to the surgeons, it is their routine activity. Recovery is slow & tough, & although I remember it well, it now seems a short episode in the past.

PS. Have they mentioned chemo at all? Or chemo plus radiotherapy as an alternative to surgery? Wasn't an option for me, but worth you asking about it.

Thanks for all the ingo - appreciated

Am awaiting a meeting with them so hopimg will be given time to decide and optipns.

Hi Das,I hope you get the opportunity to discuss everything in depth.I was diagnosed in July 2019 met the surgeon on the 27th August and had the cystectomy on the 30th September.I was classed as needing urgent surgery so it all happened very quickly.I was supposed to have scans every 3 months for the first year post op but because of the pandemic there was a longer break between them.I was on 6 monthly scans until recently but am now on annual scans.Best wishes for your appointment.Jane x

thank you so much