I had a cystoscopy yesterday, and as I feared the urologist found a tumor. He said it was about 1 cm and "cauliflower" like. I'm still trying to schedule the TURB with his office, but in the mean time I scheduled a consultation with another doctor who works at an NCI center and specializes in bladder cancer. I was pleased when I got this appointment because my uro, while he is a good physician, he seems really rushed and I think he deals with mostly non-oncology urological issues (but he does have experience doing the TURBS). He also mentioned that the tumor is close to a ureter opening so when he removes the tumor he will have to put a uretal stent in so scar tissue doesn't block it - has anyone heard of this?
Anyway, I've pretty much been numb since getting the news yesterday, and all I can think of is "the worst". I know many bladder cancers are treatable, but u til I find out exactly what kind I have (stage and grade) I am VERY nervous about having an aggressive or muscle invasive tumor. One specific thing I'm curious about is that in November I had a CT scan that showed no cancer but showed a "diverticulum". My uro said he didn't see a diverticulum, but the tumor is in the place the scan report said it was so could be blocking it? This makes me wonder if the scan readers incorrectly identified a tumor as a diverticula? Or maybe the tumor is growing out of the diverticula? If so, I've read these are much more challenging to treat. Anyway, I could go crazy with these details and wondering "what if", but I guess I just need to wait for the TURB and pathology - I just really hope mine can be treated being only 41 years old I don't want the end to be near yet!!
Welcome to the Forum and yes, you posted in the absolutely right place!!
There are many reasons for blood in the urine, as you have probably read, and until you have your urological exam there is no way of predicting whether bladder cancer is involved. Even if it IS bladder cancer, please remember that many of these cancers are low grade (slow growing) and can be treated easily.
The urologist will look inside your bladder with a very small camera and examine the surface of the bladder. If he sees anything suspicious, he will probably schedule you for a TURB (transurethral resection of the bladder) where while you are under general anesthesia he will take biopsy samples to send to the pathologist. Only after the pathologist sends the urologist his report will anyone know for sure if it is cancer. The TURB is usually an outpatient procedure.
Afraid you are just going to have to be patient and try not to panic for a while. I know this is very difficult, but you can do it!!!
Keep us posted on your progress and good luck to you!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
4 years 6 months ago - 4 years 6 months ago#47948by Sdca1
I hope I don't come across as a paranoid/worrier here because I haven't been diagnosed (I'm new to the forum which is why I chose this category), but I am extremely scared. I have a cystoscopy scheduled for next week and am dreading getting bad news. My story in a nutshell is that I've had microscopic blood in urine for the last year (I also have diabetes). My diabetes doctor referred me to a urologist in Nov., and he ordered a CT scan with contrast and a cystoscope. I had the scan right away and it showed no cancer, but shortly after the scan I began to have very visible blood in my urine (it was coming out pink). I called the uro office in a panic and wanted to move my cystoscope sooner, but they said there were no openings and not to worry. The visible blood went away for a couple weeks, but it came back a few days ago and now I also have blood clots coming out. I went to an urgent care and the urine is negative for bacteria, and I have no pain so it's not a UTI. From what I read it seems this is typical symptoms of bladder cancer. Even my uro told me the CT scan doesn't show smaller bladder lesions so the cystoscopy is necessary. He said the scan ruled out kidney lesions but not bladder lesion. I'm 41 M never smoked but do have diabetes which I've read is a possible risk factor. Thanks for letting me write here, it helps me as I'm really going to be a basket case waiting a week for this cystoscopy especially if I keep urinating blood. It's hard not to dwell on it and think about the worst, Of course I hope it's not bladder cancer, but if I do get bad news I hope I will be able to handle it with the strength and dignity of the people on here. I've read many of the experiences people have posted and it's great to know this forum exists!