Newly diagonosed

TizzyP well done for being so decisive and acting quickly on your return from holiday. I am sure you are in good hands, and lots of supportive people here. So any questions, ask away! Leo

Hi TizzyP,Welcome to this friendly group.I hope you will find it helpful and supportive.Jane x

Hi TizzyP

We all understand the shock of being told we have bladder cancer

The waiting for procedures and then the results is the hardest time

My first TURBT was over 6 weeks after diagnosis last year and I can remember how hard it was

Bladder cancer is very treatable these days and you will be in good hands and good company on this amazing group of lovely people

I wish you good luck and let us know how you are getting on

Much Love, Tina x

All I can say it try not worry too much until you have more answers and welcome to the forum. 

Lots of great people and great advice on here. 

Having had a recent TURBT in July be aware the recovery cab be different for different people. 

I was signed off for 4 weeks but continued with some pain and issues when I went back to work. 

But talk to the doctors and surgeons and you will get through it. And hopefully a very positive outcome for you. 

I am recovering from my 2nd TURBT at the moment and a few pieces of advice I would love to give myself if I had a TARDIS - 

(o) Do NOT overtake any laxative afterwards (they give you this to counteract the constipation that codeine can give you). I had a miserable 24hrs going to the loo every 10mins (no exaggeration)  2 days after coming home :-(

(o) Ask for numbing gel when they remove the 3-way catheter that you will most likely have after 1st TURBT - my removal was like the chest-burster scene from Alien. They called it "catheter trauma"..

(o) If you are sent home with a catheter - be careful not to kink the tubes when you move so that you cannot drain into the bag. This can be really painful.

(o) Take it easy - even when you first start to feel better - you will suffer if you overdo it like walking too far.

(o) Be prepared for it to take 4-6 weeks afterwards before you feel anywhere near normal - I experienced many weeks of -

Frequent urination (every 60-90mins at night - every 30mins during day)
Pain between my legs from what felt like my perineum area (sounds weird)

The overall experience in hosptial for the TURBT on the other hand was fairly easy for me - blink and you miss it as far as the operation is concerned. The recovery part was/is harder for me.

Good luck and fingers crossed for "non-invasive"
 

Can I also say I have had 3 TURBTs now and not had any problems or pain

Stings going to the loo for a few days after and then a few weeks later when the scabs come off

Catheter removal has always been quick and painless 

Not sure if its better for females, but I have always been fine

I am always very tired for about a week after and listen to my body and sleep when I need to for as long as I need to

Everyone is different but hopefully you will be fine

Much Love, Tina x 

Thank you Tina, needed to read this today (not a good day).  xxx

Sorry you are having a bad day, it's understandable as the unknown is so scary

We all get them, had them and will have them again I'm sure

I appreciate it's good to prepare for the worst but I think 90% of people have no pain or problems having a TURBT.  Its over very quickly and hopefully you will go home the same day

My first one I stayed overnight but that is because I went down very late for surgery and left early the next morning

Bring an overnight bag, slippers, robe and toiletries just in case

Also a long phone charging lead, magazines or a book (there is a lot of waiting around). 

I always bring a small cool bag with a sandwich and snacks for after and a water bottle, I get the nurses to fill up for me I find it easier than keep filling up the tiny cups from the jug

If there is anything you want to know, just ask, no question is stupid if you don't know the answer.

Much Love, Tina X

Hi TizzyP,Sorry you are having a bad day.I never found TURBT’s that bad.I used to take it easy for the first couple of days and have a hot water bottle handy to help bladder discomfort.Drinking plenty is important.Most people on here have lemon barley water in addition to water etc.Make sure you don’t lift anything too heavy for the first few weeks until you have fully healed from biopsies.I hope it all goes smoothly.Love Jane xx

Based on my experience I would say you are indeed very lucky to have had no issues or pain.

For me the first 5 or 6 days were horrendous for pain while urinating. I mean really horrendous and that was on codeine every 4 hours, they didn't help with the flank pain from my kidney stent at all. 

But if they did I'd hate to think how much pain I would have been. 

If I have to have another TURBT this time I'll be asking for alpha blockers as I read something about alpha blockers can help with the pain a fair bit more. 

Glad you have had an easy time with it though but it does seem to vary people's reactions to how much pain or issues the have.