Recently diagnosed

Hi Cat52 and welcome to the group. We know how scared you must be at the moment. The uncertainty and not knowing can be worrying, but many of us have been there. Firstly, bladder cancer can be treated successfully. A CT scan is normal, usually just to check there is nothing else going on and it also gives them a better picture of what they are dealing with. Could you let us know how you were diagnosed and what you have had done so far. This can give us a better way of helping going forward. Best wishes.

Dear Cat52 and welcome to this group. Obviously we may all wish we didn't have reason to be here, but it is likely there would be treatment possible even if the cancer had spread. Please try to concentrate on whatever calms you, or do whatever stops you thinking about it nonstop until you get a good bit more information.

Likely the pre-op is before a TURBT which stands for Trans Urethral Resection of Bladder Tumour. Is that what you're being booked in for as far as you know? If so, yes it is an op, but often only a day-case one. The long name may sound scary but my husband is just about to have his third one no bother. It means that while you are asleep under GA [general anaesthetic] to save discomfort, very slender instruments will be passed up what my husband's consultant delicately calls his 'water pipe.'

With the camera and instruments, any tumour/s will be cut or scraped away from the bladder lining. They will be sent to the lab to check what kind of cancer cells they are, this helps the multi-disciplinary team [MDT] who usually meet once a week, to plan what treatment/s/choices best to offer you. 

If this is the op you have, you may wake up with a catheter, a tube to drain urine into a bag. This is because the procedure may cause temporary swelling that would stop you peeing properly. Once it is removed you will usually have to prove you can pee normally before being allowed home.

The tumour removal will leave a raw patch/patches you cannot see inside your bladder, these can bleed for a bit and then scab and then the scabs come out in your pee after a few days. You will be given a sheet of paper with advice for after the op. The biggest tip from this site will be to drink lots of water or Robinson's Lemon Barley Water well diluted, which helps flush all your bladder clean and avoid infections [these are not uncommon after bladder procedures]. 

I think that's quite enough for now but I hope it answers some of your jargon worries. It may all sound somewhat undignified but the staff are so matter of fact hopefully you will not be unduly embarrassed.

best wishes, 

Denby

Hi Cat52,Welcome to the group.It is scary when you are first diagnosed but we are here for help and reassurance.Best wishes Jane

Hi Denby. 

Thank you so much for the information. Yes I think it's a TURBT that I'm having my pre op for. 

I'm trying to be as positive as I can be but just keep on imagining worst case scenario. 

Has the cancer come back for your husband as he's having his 3rd op?

Hi Rily,

Thank you. 

I have had blood in my urine for quite a while now, not always visible. On and off for the last couple of years I have had bouts of horrific pain and bleeding. I eneded up in hospital last year as they thought I had kidney stones but after a CT scan they realised that I didn't. They asked me to get my gp to refer me to urology but he thought he knew better and refused to do it. Only by me pushing after another really bad bout of pain made them refer me. I was fast tracked and received the diagnosis last Thursday. I had a cystoscopy for the diagnosis. 

No treatment so far, just waiting for the date for the operation. 

Hi Jane,

Thank you. 

I think I'm going to find this group so helpful. 

Hi Cat52. I think Denby has described things well. The TURBT will scrape away any offending tissue and send it for biopsies. Only the result of these biopsies can confirm if it is cancer. A few anxious wait for results. If it is confirmed, then a treatment plan will be put in place. The op itself is fairly straightforward as operations go. Day case, but prepare for an overnight. Again, keep drinking plenty of water to keep things flushed out. Best wishes.

I’m so sorry you have had to put up with pain and bleeding for so long.People tend to feel calmer once the biopsy results are back and a treatment plan is in place.Jane

Hi Cat52, kind of you to ask; we won't know until he has had the op plus lab time, if it is indeed CIS [more initials, Carcinoma In Situ, as I understand it a flat cancer patch rather than tumours on stalks or cauliflower-style] - which the consultant thinks from the visual. But he was first treated 4 years ago, had 6 BCG [same like the anti-tuberculosis jab most of us have a lump on our shoulder from] and then one new papillary tumour [on a stalk]. So that was all in the first few months though we're sure he'd had it for years beforehand. Since then it has been just checks either 6 or 3 month intervals. Red patches are common and if not cancer can come and go but visually hard to tell apart from cancer ones. So there was a red patch 3 months ago, so the consultant made it 3 months not 6 this time. As the patch had not gone by last week's check, it is pre-op on the 8th Feb and op soon after. Fortunately all this does not bother my husband, a silver lining of Asperger's syndrome I think.

The big takeaway point from his saga for you is that he has had 4 years of 99% normal life.

Best wishes, 

Denby