Hi - I'm new to this forum, here's my story ...
1) Everything was fine until three weeks ago, I casually went into the bathroom to urinate and there was blood in my urine. I mean lots of blood! It looked like a war zone - thick, red, BRIGHT red blood ... and lots of it!
2) I went to the emergency room and they took a urine sample (more like a blood sample) and they drew blood ... then they sent me home. I had blood in my urine that night, but it had stopped by the next day.
3) Saw urologist, had a CT scan, cystoscopy this week showed a tumor.
4) TURBT is scheduled for March 3rd (5 weeks).
5) My question is about the amount of blood that I passed in my urine - does that indicate anything? Is it unusual to pass a lot of blood? My doctor gave me the standard answers "A little bit of blood can look like a lot". I'm not sure that I was able to impress him with how much blood there was and it did not seem to be diluted by urine, it seemed like all blood. I'd just like to know if this is "normal" (not unusual for lots of blood to be the first sign of any problems).
6) I feel good, I'm a bit anxious - but I'd feel better if I was more informed. I wouldn't go on vacation without investigating the area and making plans, but I'm going to have a medical procedure based upon the recommendations of a doctor that I don't really know. I'm going to see my GP but I expect he will just defer to the specialists.
7) Sorry for the long winded post ... but information would help me and reassure me ... I think ...
Yes, it surely can be scary! You may have small tumors in the bladder that sort of look like mushrooms rising up from the bladder lining. These papillary tumors are one of the most common ways that bladder cancer manifests itself. If one of these tore a bit it could cause the bleeding...a little or a lot...and it wouldn't necessarily have anything to do with the severity of the cancer, if it is there.
You are absolutely right to educate yourself. The more you know, the better patient you will be. There is a LOT of information on this web site, not just the Forum area. Take some calm time to do some reading here. We are here to answer any questions (and I know there will be some) that arise.
Best of luck to you
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
The first time I saw blood I thought I was bleeding to death. Then it went away for a few weeks and then it would come back, and on and on. Finally an allergist sent me to a urologist that found the little mushroom looking things that Sara.anne talked about. It was a low grade cancer.
The main theme on this site is "get a second opinion" with a doctor that specialize in bladder cancer.
It could have been a lot of blood (I though mine was) but not enough to hurt you, and like Sara.anne said It wouldn't have any thing to do with the severity of the cancer.
You are on the right path and good you didn't wait! I will never forget when I passed blood (gross hematuria) almost 6 years ago. Yes, I was grossed out and worried. It could have been an infection. It could have been a stone being passed. For a VERY few it can be nothing and no one knows why-VERY few but, I know a few. For many of us it is cancer, either bladder or kidney. Your URO was correct in scheduling a CT scan and seeing a tumor you are on the way to beating this. A TURB is essential after your cystoscope confirmed a tumor. A pathology report will tell about the grade-low (1) or high (3), most don't grade the middle (2) anymore. They will try and take "margins" meaning the take enough tissue around the sample to make sure they got it all and to be sure it hasn't gone to the muscle (stage 2) or further (stage 3 or 4). Mine was just started when it was caught almost 6 years ago. As MANY will say, a second opinion is a VERY good move as this is often under staged-get the best and an office or hospital that does A LOT of bladder cancer! Often a second TURB on these is done for safety and being correct on the diagnosis. Too many do mostly prostate problems and they are not really up to speed. 5 weeks waiting is a little too slow for me as the scope confirmed a tumor. I'd try and have that done sooner even if you have to find someone else, a group or hospital that specializes in this. Where do you live? Someone may have a recommendation. Your records are yours so if you have too you can carry them.
Read more on our site and keep posting as someone will be around to chime in. All you can do is wait until the TUIRB results to see what the next step is. It could be BCG treatments all the way to a cystectomy.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Hi Ed. Welcome to the place we don't want to be. But an excellent place to find/receive information. Your story is close to mine. A rapid, unexpected flow of blood. An ER visit, sample, and visual observation with a recommendation to see a urologist. In all, about 5 weeks from uro visit to TURBT, and becoming a BC patient. Correct, you are seeing someone you don't know, entering into the unknown. Your initial "trust" is that he/she is capable to perform that 1st TURBT and get the tumor evaluated (good, or bad). Now you know where you stand, and how to proceed. The best recommendation will be to get a 2nd opinion.
My uro did 2 TURBT's, but I wasn't happy with him, so switched to another uro (not a specialist), who handled my situation much more effectively.
Use your anxious wait time to research other uro's, or possibly a specialist, for that 2nd opinion. You're on the right track of 'doing something'. Once results are in, you'll have better info on the specific condition and how to proceed. Keep us posted, and questions are welcome.