New to forum

[Larry_HN]

Hi all. First of all, it's great to find a forum like this with so many positive messages and the opportunity to get information and support. I feel a little bit like I might be here under false pretenses... I guess I'll tell my story and if anyone feels motivated to comment or give information, it will be much appreciated.

I got referred to the hospital for cystoscopy after a series of water infections getting more regular and more severe. I was possibly referred a little later than I might have been because the first couple of infections happened when I was living abroad (I moved back to the UK from China 18 months ago). The last infection was a couple of weeks ago and I passed a couple of clots of blood. I assumed it was encroaching age, my GP thought not - I am 49.

It was quite evident on the cystoscopy screen that there was a growth that shouldn't be there. The doctor simply said that it was a tumour, that it would have to come out and that he couldn't say whether it was cancerous or not until it had been biopsied. The procedure he (briefly) described was obviously the TURBT that has been referred to in this forum. I was told that I would get an appointment through to be readmitted for the procedure. I have done the standard "Doctor Google" thing and I'm assuming that it will be removal followed by some kind of local chemotherapy drug inserted into the bladder, but none of his was explained to me in much detail. I feel a bit stupid as an educated and generally confident person that I just said "nope" when the nurse asked me if I had any questions...

As a matter of interest, I'm not a smoker and I don't have any other obvious risk factors  that would explain why the fickle finger of fate has poked me. I do recall the doctor in the hospital saying that the tumour appears to be on the interior wall of the bladder and not very deep so I'm guessing that it is non-muscle invasive.

My wife has very sensibly suggested that I get a non-urgent appointment back with my GP so I can ask all the questions that I obviously should have asked at the time. This all happened yesterday (Friday) afternoon so that's my job for Monday morning.

Questions off the top of my head: does this sound like a familiar experience? How long till my appointment comes through? How long will I be off work after the process? How crap will I feel? Who's going to win next year's Grand National? What are tonight's winning lottery numbers? Any suggestions or guidance would be very much appreciated. Thanks!

[Rossi68]

Hi...the waiting is the worst... Write down questions as when appointment comes it's hard  remember everything... If at all worried contact your doctor or consultant... Fingers crossed for you 

[ChrisRS]

Hi Larry

You should have two TURBTs about 4 weeks apart, as standard procedure, and some chemo put into the bladder within 24 hours of the first TURBT, and possibly 2nd TURBT.  The chemo is to kill any dislodged tumour cells to stop them starting tumours eleswhere in the bladder.  You should also have a CT scan soon after your TURBT to check you have no tumours elsewhere.  The 2nd TURBT is to check the original diagnosis, particularly the staging, which is the depth of the tumour in the bladder wall.  The stages are Ta, and T1 to T4, and Ta and T1 are classed as non-invasive.  The tumour will also be graded as to how aggressive it is, with G1 being low grade, G2 being medium, and G3 being high grade.  Non-invasive cancer, which is also G2 or G3 is normally treated with up to 3 years of BCG immunotherapy, which is what I have been having.

The TURBT can take a week or two to recover from, with the removal of the tumour and the chemo causing some irritation to the bladder, and the catheter used for the op, under general anaesthetic, can cause some discomfit in the urethra afterwards.

Good luck with the procedures and diagnosis.

Chris

[Larry_HN in reply to ChrisRS]

Thanks Chris, nice to get some really clear information about what is likely to happen. My main worry is disruption to work (I'm in the process of changing jobs) and family (son about to go to University). I guess these things don't wait for the most convenient times to strike! I'm pretty positive and aware that at least initial indications suggest that it could have been a lot worse. Keeping smiling...

[JustRita in reply to Larry_HN]

Fantastic! Brilliant positive attitude - keep on smiling and remain positive as all WILL be well 👍

[JustRita in reply to ChrisRS]

Hi Chris. Spot on! Very similar to my experience with 'non symptomatic' Ta G2 bladder tumour....noticed by radiologist when I had an 'erect' xray for on going relentless severe sciatica pain problems for 3 months.

Thank God for that observant radiologist.

Tumour removed, chemo blasted during procedure and post op 2 x 3monthly camera inspections done.....all appears well so far. There are many, many positive good outcomes with bladder cancer so, keep smiling and hope for the best. Good luck 👍.

[FergDevins]

Larry...totally get where you are at. My cystoscopy results in me watching the screen, the doctor pointing out two irregularities and then explaining that they are tumours and I needed to have an operation to remove them.  I don't think you should be alarmed by what they don't know about what it is at this stage. Until they get in there and deal with it, and the do pathology on them...they might not truly know. I also know that the doctor dealing with you becomes quite routine for them...not necessarily for us on this side of the converation. Depending on what's there will dictate how they treat follow up post surgergy. Not sure if you GP will know much about it. Mine was very helpful, but this stuff is very specilized. We are update our Bladder Cancer Canada site but you might find it useful. There is also a "forum" on there if you want to post and chat with others. Not sure where you are living Our site is bladdercancercanada.org. It was founded by two "survivors"...and they are still with us today. Smiles...

[Larry_HN in reply to FergDevins]

Thanks, I'm actually in the UK but having lived in China I've got the utmost respect for Canadian doctors! I'll check out the bladder cancer Canada site, I'm an information junkie so always happy to get more info from reliable sources.