Diagnosis without cystoscopy

Hello, I'm new to this site. I'm a 39yo m recently diagnosed with potential bladder cancer due to multiple tests with blood in my urine. My doctor decided to send me to a Urologist and bring a CT Scan of that area. I went to the Urologist today and he said the scan looked good. He also checked my prostate (a first for me) and that was fine as well. They checked my urine again and it was still testing positive for blood. He said he needed to do a cystoscopy to which I cringed. Since my initial diagnosis I had googled the universe of bladder cancer and was well aware this may be necessary but not on the first visit. I decided my health was the most important thing and swallowed my ego. I was awake for mine and they just applied a topical solution before the procedure. I'm not going to sugar coat it was rough but not unbearable. So relieved I did it now that its over. The doctor said everything looked good but still ordered two more tests. A urine cytology and a FISH test.

   I guess this means I'm not out of the woods yet? Can anyone give me any insight or advice? It would be greatly appreciated.

 And to first78, Its not that bad. It was never "comfortable" but it was necessary and it was over quickly. You really must try to consider the greater good in your situation. You can do it man.

Went back for my urine test results last week only to find that the nurse I had spoken to the previous week had clearly not passed on the message that I was only going for the test results, not the cystoscopy. I was really angry about this as I had made it perfectly clear that I would only go back for the results...nothing else.

When I saw the urologist for the results not only was it not a private meeting...there were 2 nurses and another consultant present, but the urologist launched straight into telling me what the cystoscopy involved...when I tried to stop him and explain I wasn't going to have the procedure and only wanted the test results he completely ignored me and carried on talking about the procedure. I was really upset and was crying and all this did was upset me further to the point where I just wanted to leave.

When he was finally ready to tell me what my test results were he just said they'd all come back clear...he didn't expand on that at all and I was too upset to ask any of the questions I'd wanted the answers to, I just wanted to get as far away as possible after not only feeling totally humiliated crying in front of all these people, but also feeling angry that the urologist hadn't listened to me. There is no way I am going back to this hospital. How anybody thinks I will even consider allowing someone to perform a cystoscopy when they haven't got the decency to even listen to me I just do not know.  

Hi gene19728,

If i can be of any assitance to you please let me know, i am not a doctor but have been through bladder cancer for the past 18 or so months, had 4 cystoscopys and the TURBT operation and if i can be of any help in re assuring you then please do ask.

all the best

Pauli.

Hi Kiko. This thread is a bit out of date. Could I suggest you start a new thread of your own by clicking on the "New" tab. The current members with experience of neobladders/stomas will then be able to help. Best wishes.

Where do I click on the NEW tab to ask for advice please?

Hi Kiko. Scroll to top of page and click on "Bladder Cancer Forum". This will take you to the main forum page. On a laptop, in the top right hand corner you should see "NEW". On a phone you should see a plus sign (+). Click to start a new topic. Post your current situation and questions. Any problems, post back here. Best wishes.

Click the NEW button on the top right of the page.