Gross hematuria - any info or indications?

10 years 1 month ago #45820 by sara.anne
Replied by sara.anne on topic Gross hematuria - any info or indications?
A referral to a urologist by the ER was appropriate...the ER is not equipped or experienced in the area of bladder cancer (and neither are some urologists!)

As for what you might be facing? No one can give any estimate until the results of the biopsies come back. It could be anything from a watch/wait situation to treatment with BCG to surgery. I can't tell you not to worry (of course you will)
but there are no estimates or statistics that can tell you anything...yet.

Patience!! (I know, it is hard.)

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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10 years 1 month ago #45814 by EdFlaherty
Replied by EdFlaherty on topic Gross hematuria - any info or indications?
Thanks to everyone that answered my query. It is good to know that you are not alone and that there are people willing to share info.

I find that I do better if I have more information, but getting an evaluation or an "estimate" from a doctor is difficult.

I'd really like to know what I'm looking at and what to expect - good or bad, I'd like to know what is most probable. I'm sure that there must be numbers and percentages, but getting the information is difficult.

With the initial diagnosis I'd just like to set some expectations ...
1) Is this probably "no big deal" and the TURBT along with vigilance (including cystoscopy) is the expected course of action?
2) Is it probable that I'll need follow-up treatments in addition to the TURBT?

I think that when I went to the emergency room with blood in my urine that they could have done a cystoscopy right away and done the TURBT within a day or two. The waiting and stress are a big part of any disease and medical people should recognize the need to deal with the stress as well as the condition.

Again, thanks for your help and replies.

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10 years 1 month ago #45810 by rbmc
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.

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10 years 1 month ago - 10 years 1 month ago #45808 by Alan
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.

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10 years 1 month ago #45806 by Joey
I had blood in my urine maybe twice in one day in Februay 2007 and then not again until October 2007. Urine tests etc in February showed no blood when I saw my GP several days after my first sighting.

I was DX with a low grade non invasive tumor at that time and have been doing very well ever since after the necessary surgery and BCG treatments.

Joey.

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10 years 1 month ago #45805 by dieseldoc
Replied by dieseldoc on topic Gross hematuria - any info or indications?
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.

T1,NO,MO battling bladder cancer since 2005

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