I’ve just been told I have one single stalked papillary lesion on the trigone of my bladder.

Hi nikink

Welcome to the group where you will find lots of support. 

I have no experience of this myself but Iam sure there will be someone along soon to offer you advice and support. You are not alone here, the group is fantastic 

I know the waiting is difficult and the days seem long but the turbt will establish a lot more for you and answer a lot of your questions.

Try not to be afraid i know it's hard not to be, but you are moving in the right direction 

Best wishes 

Mark

Thank you so much Mark for the warm welcome and reassurances. I hope you’re doing well with your treatment etc. my best to you x

Hi Nikink,Welcome to our friendly group though I’m sorry you find yourself here.Once you have had the TURBT (s) it’s common to have a second the biopsies results will determine what treatment you will need.It’s usual to have some type of scan when newly diagnosed.This will show the size and location of the tumour and will give your urologist detailed information.The waiting is horrible but stay off Google as it’s easy to make yourself more worried by looking things up.If you have been allocated a specialist cancer nurse they should be able to answer your questions.Feel free to ask questions here as we are all here to help and support you through.Best wishes 
Jane x

Thank you Jane. You’re all so lovely on here. It’s too late re Google. But I’ll stay off it from now on!
I’m terrified that I’m T4 I’m aching and have so many pains. I’d say for months now - I went to my GP with pains and pink loo paper early December.. Now I’m here.

The only thing that’s making me feel slightly more positive is that I have an ovarian cyst and fibroids too so they could explain some of the pains and also my urological CT scan didn’t show anything.

i don’t know anything else. 

Thanks again for welcoming me jane and I hope your treatments and or monitoring are all still going well. My best to you too x

Hi Nikink and welcome to the group I had a single papillary lesion and had a lot of aches and pains before and during treatment and found alot of it was probably anxiety as things settled then so did these aches and pains I  was Diagnosed Ta Stage 

Ste 

Hi Nikink,I had a lot of backache at the start but it turned out to be arthritis.If your scan was clear your pains will probably be due to the fibroids & the cyst.I hope you will find it helpful on here.We have all been through that horrible waiting stage at the start and know how hard it is.I tried to find things to do to keep occupied while waiting.I’m ok thanks cancer free 5 yrs on from bladder surgery.You are amongst friends here we all try to help each other.Jane x

Hi. Welcome to our group and sorry to hear of your situation. The initial diagnosis is indeed shocking but once you have a plan in place, things will be easier to understand and cope with. My own diagnosis of T1G2 TCC bladder was confirmed in June 2024 and due to my personal preference, underwent cystectomy with ileal conduit in September 2024 and now recovering without any issues. I’m 61 years old. It’s very common to have two TURBTs to properly stage the tumour. Depending on the grade and thickness of the tumour, you’ll be given the options of treatment. It is very normal to be scared at your stage and think of the worst case scenario but often things turn out to be not too bad. Bladder cancer is a very treatable and curable disease. If your urological CT was normal, then it is highly unlikely that you have advanced disease as it would’ve picked any bony lesions in spine or pelvis too. Waiting for investigations and procedures can be frustrating but now that you’re in the process, things should move fairly swiftly. Please feel free to ask any questions if you’re worried. Best wishes. X

Thank you for telling me this Ste and thank you for welcoming me here. My best to you  x

Thank you Hopeful786, this has given me a boost today. I pray that the CT was correct. It seems there’s always so long to wait it’s just awful. Thank you again and best wishes to you x

Hi Nikink,

Welcome to the group.

Before you had your cystoscopy were you introduced to a CNS - specialist nurse? At the start of this journey I had no idea about how the whole thing works but now realise that these nurses run the show, they see lots of patients and can be useful contacts for your questions and later on for getting info in front of doctors. If so you could talk to them.

My hospital had a 1 stop shop - review with nurse, CT scan and then cystoscopy. In fact, during the latter, done by a junior doctor not the specialist,  they showed me something that was a cross between a big black verruca and Denis the Menace's hairstyle. (And I still didn't realise what it was -  they only told me it was cancer a couple of weeks after the Turbt when I met the consultant).

The Turbt is what gives them the information they need about what is going on inside you. So please don't go rushing ahead just yet.

I was 69 and a keen gym goer and walker (still am) when diagnosed. Maybe you've been a bit over-conscientious with your crunches or weights recently. The CT scan will give information about any spread. Meanwhile, any pain's just as likely not to be bone-related. Someone mentioned anxiety. Maybe some stretches and meditation could help both to settle the aches and calm you a bit.

Whatever it is, your medics have seen it all before and will help you through it along with this forum.

All the best

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