Suspected Bladder Cancer - confused about what is happening.

Bit of background. I am 45yo male.  I had a CT scan for an unrelated issue and they made some discoveries on that scan.

What was found was left bladder wall thickening, left kidney hydronephrosis, left moderate enlarged ureter, prominent iliac lymph nodes.  That was taken from the urgent 2 week wait referral which popped up on the NHS app.

I've not had any appointment with the GP, seen a urologist or had anyone explain it to me yet, its just all moved straight to going in for a flexible cystoscopy.

Due to some very bad things that happened to me as a child for many years, anything urological in terms of contact is terrifying. 

So as you can imagine, I was a bit of a mental mess when i turned up at the cystoscopy. 

Unfortunately it all went horribly wrong. Despite all my emotions telling me to run, I stayed and they started the procedure. I felt pain when they were trying to insert the camera and the doctor/specialist told me they were stopping as they couldn't get the camera into the bladder (my words not theirs). They made me sit down and the doctor explained that I am going to have to have a TURBT with dilation under General Anaesthetic, gave me the leaflet and started to explain the two main types of bladder cancer to me (non and muscle invasive). She did a little drawing of the bladder and I vagely remember her drawing a line on the left wall and something by the left ureter, but its all a blur. I did ask a few questions that i could blurt out but she couldn't answer them, like what could it be etc.

I have a history of poor mental health anyway so things have been a bit difficult. 

After speaking to Macmillan on the phone and in person at a information center, I have been able to calm a bit and are a bit more informed with reliable sources as opposed to googling the CT findings which pretty much say in screwed. 

Following week I was given the date for the PreOp.  After speaking with macmillan, they advised me, and i came to the same conclusion, to be totally honest at the preop about the undisclosed childhood issues as well as any other medical symptoms that arent on my medical record (I really probably should have seen my GP on many occasions in the past!).  Knowing I would find it hard to say some things, I typed it all up and handed it to the nurse at the PreOp. 

She was really understanding and kind which did help a lot.  My surgery had been planned as a day case the following monday (this week), however due to no one to supervise for 24 hours and a couple of other medical issues that op had to be cancelled and moved from the local hospital to the main hospital where the regional Urological center is.  Its rescheduled for next wednesday.  I can't complain about the speed of things so far but things are happening quicker than i can keep up in my head - but thats not the NHS's fault. 

I guess the urgency is the main issue, but I feel left in the dark about what is happening. Im used to the "typical" way of: seeing your gp, having some tests, maybe more tests etc some kind of diagnosis or consult, then treatment.  I was hoping someone would sit me down and say "this is what we found, it could be x, y or Z, to be safe incase its Z, we are doing cystoscopy etc".  I know nobody is going to say what it maybe without any high level of confidence but it would have eased my mind to have something from someone professional.

But that has not happened and i feel like Im just along for the ride with no choice of whats happening.  I have been trying to go through this with Macmillan and they have been amazing.  They have tried to find out if i have a key worker yet (I don't) and after discussing about how i find out what actually was on the CT scan and what it means, they advised that i can speak to the Specialist nurse at the urology department and they should be able to explain it to me to an extent.

Following the phone conversation, I didn't really learn anything new about what was on the imaging.  Maybe I was being a bit naive to think I would get much info but i was hoping to find out where the tumours are size etc so i can at least visualise it in my mind so i understand what is happening. I also asked about at what stage I do get to speak to someone about some of these concerns which she said I can ask some questions before the op and the surgeon may come round afterwards, but she was fairly non-committal about what kind of stuff i can ask - i get that.

What has messed with my mind a bit, considering i was just getting to terms with the scope of what will happen in the TURBT, is that she was mentioning them doing the dilation and going in for a look and biopsy.  I should have asked her more about did she mean removal but was anxious so didnt.

Now I am all confused.  As the name of TURBT suggests, "removal of bladder tumour" is a key aspect of the procedure with a subsequent biopsy of the removed material.  Now maybe I have confused her words about going to rake a biopsy, but i read that to literally mean a small tissue sample not complete (or as much as they can) removal.

To make things a bit worse mentally, I had done more research - although i followed macmillans advice to use more credible sources (eg macmillan or cancer research sites which are the main ones i read).  From the various sources, it seems that over 90% of bladder tumours are cancerous.  Not what anyone wants to hear but, it is what it is and I accept i may need to be realistic about it. If im lucky enough to be in the non cancerous group then great, but i dont want to clutch onto that and give myself false hope.

But this then leaves me confused about what is happening next.  If those odds are accurate, and I have not misinterpreted the medical context,  then to me, the idea of having a TURBT and only a biopsy rather than a removal makes no medical sense as Im already under a general, they already have a rigid cytoscope inserted etc.  I my eyes if that was the case I'd just be having a "rigid cystoscopy" (and dilation as well).

So It all doesn't make sense to me.  If its just a biopsy, and it turns out to be cancerous, I have to go back soonish for a TURBT anyway and go through all the mental trauma of it again when they could have done it all in one is difficult to understand.

Maybe I've just latched onto the nurses words too much and overthinking it.

I know that if it turns out cancerous, there may well be future TURBT procedures, chemo etc all of which will involve mental trauma given my past, on top of the obvious worries and difficulties anyone would have with such treatment and its potential implications.

I had been mentally trying to "kick the can down the road" in terms of dealing with the anxiety of that until after the biopsy results and just get through thing next week, but now I am worried one procedure is going to statistically turn into 2, before I even get onto what could be a long path of treatment.

I know I've rambled on a bit but trying to make sense in my head - I can be very analytical and calm about things when I have some info, or people can explain things to me in a matter of fact way, with reasonable opinions, chances etc - then I can process it in my head and find a balance to help me carry on.  

Anybody got any thoughts or advice?