Bladder Cancer Possibly.

Dear James,

I fear you are overthinking things due to your anxiety again. They have to tell you all the worst complications in case you are one of the few that gets them. But that does not mean that you personally James will necessarily get any of them.

If you need pain relief you will be given it - you just need to agree to take it. Make sure they know about your bowel issues.

The surgeon cannot avoid bleeding from the TURBT site, it's as if you had scraped your knee open in a fall: the body's process to create a scab, then new skin to heal the would has to involve letting some blood leak at the start of the process.

Be sensible afterwards and do not do any heavy lifting, strenuous garden or housework for a few weeks and you will probably avoid making it open up again.

What does happen to most people a few weeks after the TURBT, is that the scabs have done their work to seal the wound while the new lining forms underneath. The scab or scabs then break up and come loose and you may notice dark bits when you pee. This is absolutely to be expected as I have tried to explain.

In short, you have much less to fear from having the TURBT than from not having it.

Denby

Hi James. They have to tell you the worst possible outcomes to cover themselves, but a TURBT procedure is relatively straightforward. I have had 3. Most peolple are home the same day. My first one, they had to dig deep because it was so advanced. I was in hospital for 4 days which is very unusual. I was up and about on day 2 and had no after effects except a bit of stinging for a few days when peeing. My follow up TURBTs, I was in and out in several hours. Try not to overthink things too much. Best wishes.

A well thought out and reassuring explanation Denby xx

Hi James, I know what fear does to our thinking process, at times making us hyper vigilant and searching for everything that may go wrong. Truly my heart goes out to you .Denby explained it very well and how you will be looked after. Just to let you know that there are lots of us on here that are right behind you and you are not alone .

Hi James,I’ve had several TURBTS over the years and all relatively pain free.I hope you will go ahead with yours as hopefully it will relieve your symptoms and give you some answers.We are all here for support.Best wishes Jane x

Hi again Retrovanian,

I had my TURBT over 2 years ago as I have said before. But had no pain, not much bleeding (despite having had as much of the tumour as they could get at scraped out for testing) and was let out that evening. In the days that followed it all settled down quickly. So I have no idea where the 6 weeks comes from - haven't seen anyone on here talking about that.

Even if I had been more affected, after the TURBT they could diagnose what was wrong and then tell me and start to treat me. In my case it was muscle-invasive cancer. Without the TURBT I probably would not be here now, even if I am minus my bladder (which is now not even a minor inconvenience). 

You don't know what, if anything, is wrong with you before they do the TURBT. 

Bleeding from the TURBT operation is not the problem. People have explained why there may be some and about scabs coming away. But from my own experience I can tell you that pain, bleeding (and incontinence) from a growing tumour is much worse. When my bladder removal was cancelled and later delayed because of a blood clot I was desperate to get into the operating theatre PDQ. Luckily they got me in there before the tumour broke through the bladder wall, for which I am extremely grateful. 

What you do next is totally up to you, but I hope you can see that the treatment is not nearly as bad as doing nothing would be. All of us have managed to cope with the TURBT and get on with getting rid of the real problem. And that is what I suggest you concentrate on, not something that may never happen.

Best wishes,

Latestart

I still can't make my mind up. The fact that I have to go to Oldham again to get another bloodtest on Monday. I have already had the pre -med. The Hospital are not providing taxi's but an ambulance to get there. I could get there 2 hours early and not get home until late. I am exhausted already. There are so many complications about getting there and back plus the worry with my OCD. The hospitals don't seem to care about mental illness. Trying to get accurate details from them is almost impossible and even the Macmillan Support people are having difficulties. It would be better to just not survive the TURBT than go through weeks of pain and or incontinence then to be told I have bladder cancer.

Kind regrards James.

Oh James, this is so frustrating for you.

However, please try whatever calms you, some breathing exercises or a little stroll outside.

Whenever my husband has appointments like this, I pack a bag for myself. I take a book, nothing too heavy as most waiting rooms are distracting places. Also a puzzle book, in case it's too hard to even read the book. And a bottle of water or squash or travel cup of my favourite tea. And some biscuits. I favour oatcakes as they are very filling, and neither sweet nor too salty.  Some people like to have headphones to keep out the noise, and or to play their preferred music or radio.

I strongly suggest you start to assemble a bag for yourself now, ready for Monday.

Could you ask you GP for some short-term extra tablets to help you cope with the hospital trips? I'm sure that would be a reasonable request. 

Please remember, IF you are found to have bladder cancer, it is usually very very treatable. Now, I understand that you anxiety makes you believe you are bound to be the unusual one, but the only way to find out is have the TURBT. So please don't back out of it now you have got this far.

Denby

Hi James,What is worrying you the most ? Without the TURBT you won’t really know what is going on in your bladder and it may be something they can treat there and then.You have the support of everyone here to take this next step to get help.Best wishes Jane 

Thanks Denby and Jane. The problem is I have no control over any of this including transport and what they will do in the surgery. I might end up with a Catheter left in for weeks. I cannot cope with pain or discomfort. Living on my own gives me no options.

Kind regards James.