Symptoms?

Hi Nannynoo and welcome to the group. Some of the symptoms you describe could be associated with bladder cancer but could also be caused by many other things. We know how worrying the not knowing and uncertainty can be but be aware if it does turn out to be bladder cancer , then BC can be treated successfully. Good to know you are having a cystoscopy. A fairly straightforward procedure and you will be able to see for yourself if anything untoward is going on in your bladder. The doctor will talk you through it. Lots of us have been there so feel free to ask anything. I hope it goes well. Best wishes.

Hi Nannynoo,Welcome to the group.Best wishes for your Cystoscopy.It’s a quick procedure.Jane 

Hi Nannynoo and welcome to this friendly and supportive group. I hope all goes well with the cystoscopy on Friday. It is a quick and painless procedure. Please let us know how it goes.

Sending you positive vibes ️ 

Love Ade xx

Good luck tomorrow Nannynoo. Lynn x

Thankyou x

Good luck with your cystoscopy tomorrow Nannynoo!

Your UTI symptoms without an infection and trouble passing urine are very similar to the symptoms I suffered prior to my diagnosis. Unfortunately, I had multiple cystoscopes and an MRI which failed to identify the cancer (this is extremely rare) so if for any reason you are not happy, please continue to advocate for yourself.

Keeping everything crossed for you 

Hi . Thankyou for your reply.  How did you finally get your diagnosis, if you don't mind sharing.  I don't know yet what exactly is going on with me , bit I know my body and I know there's something very wrong somewhere.  I'm just quite desperate for a diagnosis, any at this point, that could lead to a treatment.  

I wish you a return to good health going forward x

Hi Nannynoo . The flexible cystoscopy will identify if there is anything untoward in your bladder. If anything is seen, the doctor may offer an opinion but cancer would only be confirmed once a biopsy is taken at a later date. I hope all goes well. Best wishes.

Hi - No problem, happy to share.

I started experiencing severe back pain and symptoms of UTIs and my GP sent me for routine bloods and my eGFR (kidney function) had fallen to 40 - less than half what it should be for my age.

I spent a few nights in the Royal Free NHS where they discharged me prior to the junior doctors strike thinking it was a kidney infection (CT scan did not show anything).

A few days later I made a private appointment but collapsed one evening with shakes / shivers. Was taken to the private hospital where my kidneys were failing and I had sepsis. The clinic inserted bi-lateral nephrostomies and over the next 10 days the kidneys function improved. I had another MRI and cystoscopy, and there was very minor signalling changes in the prostate but everything pointed to an infection.

My consultant still wasn’t convinced someone my age would have failing kidneys for no reason so took a prostate biopsy and I was discharged.

I went back a week later for results and expecting for the nephrostomies to be removed, only to be told I had muscle invasive bladder cancer and the biopsy showed bladder cancer cells in 38 out of the 42 biopsy spots.

Further tests showed activity in the trigone of the bladder (basically the bladder neck/urethra) which is how it was able to spread so quickly into prostate, nodes and seminal vessels.

My cancer was just a really unfortunate, perfect storm of; no solid tumour, unusual positioning, no symptoms (other than the UTIs and voiding issues) and being extremley young. In hindsight it was possibly missed a few times by radiologists and doctors - I had 3 cystoscopies, 2 CT scans and an MRI all pre diagnosis.

Thankyou x