Waiting on date for TURBT op

Ive now received date for TURBT this Friday 16th but this is going to coincide with when I was to go for CT scans on same day and time! The nurse said it won’t matter if I don’t have CTs done before the op. But surely it would give the surgeon a much clearer picture of everything by doing the scans before the op? I am getting very anxious about the amount of increasing pain I’m feeling every day although paracetamol every four hours has helped to ease it a bit. Has anyone else felt their pelvic pain worse when sitting or lying down? The burning feeling inside bladder has definitely decreased since stopping cranberry juice and cutting out acidic foods so thank you again so much for the advice.  I tried the barley water but it smelled really off although it wasn’t out of date so will need to get another bottle.

Not sure if I’m putting this post in the right place as it looks like I’m replying to my own message! Wasn’t sure if I needed to post a new thread or continue here where I started my first post lol.

Sending my best wishes to everyone x

Hi Angelica23,Thanks for updating us.I shouldn’t worry too much about not having your scan before the TURBT.You will get one as that is standard.It’s usual to have a second TURBT a few weeks after the first.Once the biopsies and scan results are back the specialists will meet and plan your treatment.I’m glad you are feeling a bit more comfortable omitting the cranberry etc.Perhaps you can get some stronger pain relief for the pelvic pain ? Best wishes for Friday.Let us know how you get on.Love Jane x

Thanks Jane yes that makes sense if a second TURBT is needed. Will try co-codamol as paracetamol can wear off too quickly. Friday can’t come quick enough but I will be a nervous wreck on the day! 

They are not usually too bad.It’s normal to have a catheter when you come round.At my hospital once the catheter was removed you had to be able to pass urine 3 times before you were allowed home.Some people have to have catheters in for longer.It will depend on how easily you can go post TURBT.Sometimes you can go home the same day but it’s more common to stay in hospital overnight.Once you get home drink plenty of fluids and take it easy.I found a hot water bottle was a comfort on the bladder and regular painkillers if needed.Love Jane x

Hi it’s been a while since last posting here but unfortunately there was a few complications after my TURBT instead of one overnight stay ended up 10 nights in hospital! My dx was high grade 3 pt1 multiple tumours around 10 I believe. But after only 8 weeks unfortunately multiple tumours have returned. No other treatment options now were available apart from Radical Cystectomy urostomy with womb, ovaries and lymph glands removal. Admission day is this Wednesday 29th May for op been trying to not focus on it at all leaving it until much nearer the time to even look at all the info I was given. But now I just want the time to slow down it’s coming far too quick! But do appreciate that the quicker it’s done the better the outcome will be as my consultant said it is dangerous! Didn’t like hearing that word! 
Has anyone else had tumours that came back so quick and would really appreciate any helpful tips going in for this procedure? 
Thanks for all helpful posts on here my best wishes goes out to all of you x

Hi Angelica23 . Sorry to hear of your recurrence. Unfortunately we know this can happen with BC. Not had RC myself but many here have and I am sure they will be along with some tips and advice. Best wishes.

Hi Angelica23,Sorry to hear about all your complications.For your cystectomy take in loose fitting clothes and slippers/shoes that slip on to save bending.You will need some help once you get home for the first few days at least as you will feel very tired.Eating little but often is best.You will probably be put on a low fibre diet while the bowel recovers.You may find you don’t feel hungry and it’s common to lose weight.Build up your walking distances gradually.You may well be shuffling to start with and a tip I got here was to take smaller steps.Some people get vaginal and anal leakage so pads may be helpful to take in.Sugar free chewing gum can help to stimulate the bowels.I hope it all goes smoothly.Let us know how you get on when you can.Jane x

Hi Angelica, I had a radical cystectomy January 2023. I only have 1 ovary, everything else removed as well as part of vagina. I have a neobladder though. If there’s anything you need to ask just fire away. 
peoples experiences differ from person to person. But it’s good to know how others recover and any issues they experience along the way. Hope all goes well. This is a great forum and has some really lovely people on here that are willing to help and share everything with others to help them get through the tough times. 

best wishes 

Paula x

Thanks so much for the very helpful tips will certainly be taking them all on board! In fact I’ve taken a screenshot lol so I can highlight all of them! Was told I’d likely be in for at least 17 days with first few days in ICU. Would that mean you can’t have any visitors until you’re in the ward? It’s expected that I will likely be in a bit longer due to my underlying autoimmune conditions. But thankfully my consultant who is very reassuring says he won’t be sending me home, as I live on my own, until he’s satisfied I’m ready. I’ve also had such wonderful help from MacMillan local services I can’t thank them enough for all the support they have given me. 
Many thanks x

Thank you Paula, yes I was offered the Neobladder to begin with but as there was a good chance I might have to self catheterise and it being much more intensive surgery it wasn’t going to be the best option for me. But it is really amazing what can be done today with surgical advancements especially on reconstructing a new bladder. I hope you have recovered well from your experiences. Yes it’s a great forum and I’m likely to have many questions going through the recovery process! 
best wishes x