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How where you diagnosed? what tests were done to finally find it

1 year 4 months ago - 1 year 4 months ago #55292 by ruliving
About a year before I was diagnosed I noticed some reddish colored blood in my urine - what also seemed to be pieces of blood (i now know as clots)

I did some research back then and determined that it just must be a kidney Stone and that I was lucky not to experience any pain as I've heard many tell of there kidney stone experiences. I was very wrong!

It all went away and I let it go... The blood came back almost exactly a year later. I thought, no big deal, been through this before, However, this second time it didn't go away. It just got worse. I didn't want to tell my wife, but I wasn't sure how what was going on. This time, I was honestly scared. Something was very wrong - I set up an appointment with my Primary Dr. He ordered lab work. In the mean time all visible signs of blood went away. I almost cancelled my lab work, but decided to go anyway and learned that there was blood in urine (just not visible to the eye)
My primary Dr ordered a CT scan to look at my kidney. Which seemed OK. He's the one that recommended I see a urologist. It took a couple of weeks to get it to see the urologist, in the meantime, the blood came and went. Sometimes very bad, when I did finally see him, He performed a cystoscopy which he knew right away it was cancer - Two weeks later - I was in for the TURBT, Pathology confirmed the cancer.

Sorry, probably to much information.

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1 year 4 months ago #55237 by richard_lv
Hi Kathy.

My dad was recently (in January) diagnosed with Bladder Cancer.

My dad had negative urinal analysis (cytology). Ultrasound showed a huge tumor. Then a CT scan showed it too. And then cystoscopy confirmed it.

Basically four tests, very fast and quick.

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1 year 4 months ago - 1 year 4 months ago #55200 by Alan
Your cystoscopy should be the final piece of your puzzle. Between the cystoscopy, urine cytology and CT Scan I believe most tumors will be detected. My URO was really on his game when the radiologist read my scan back then writing "No tumors visible or apparent n the urinary tract"! No only did he personally read it, he saw the tiny papillary tumor that showed on the scan. It didn't make any difference, he was also going to a cystoscopy anyway which confirmed it. So, yes, 99% will be found. That with visible blood in the urine giving me reason to see them in the first place as a symptom will make a good URO very thorough!

Keep in mind with your post about a non obstructive stone. There could be other stones that are simply missed or that have recently passed causing friction leading to blood passing. You are doing right to find the cause and I caution that for a very few people it is never discovered why! My wife is one of them as she had many of these tests some 25 years ago including a retro grade pylogram that looks up into the kidneys.

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.
The following user(s) said Thank You: katkahle

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1 year 4 months ago #55188 by sara.anne
No one test is perfect, which is why they do so many. It is the sum of all the information that the doctor has that helps him to figure out a diagnosis. So I guess there is no definitive answer to your question....,wouldn't it be
wonderful if we could just give a finger prick of blood and get a complete picture?

It will be interesting to hear what your urologist has to say!

Please let us know...and good luck!!

Sara Anne

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

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1 year 4 months ago #55187 by katkahle
Yes thanks so much. Do you feel that cancer in the bladder could be missed by the c t scans. Will go to urologist May 19th for the test to see inside bladder. So if he sees it then could it be missed with the ct scan with contrast and just a reg ct scan?

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1 year 4 months ago #55186 by sara.anne
Hello, Kathy...and welcome. I moved your post here from the "Chit chat" topic because that is primarily for non-bladder cancer conversations. More people should see your post here.

As to your questions, everyone's symptoms are different with some "common themes." For example, I have never had blood in my urine, visible or microscopic. My only symptoms were recurring UTI's. A nurse practitioner at a gyno practice told me that anytime you have more than 3 UTI's in a year you need to see a urologist. She was right!!
Others have only microscopic blood, some have no symptoms at all. It is not usual to feel pain, although kidney issues can be quite painful.

The usual progression of tests....cystoscopy where the urologist looks into the bladder with a tiny camera, a CT scan of the bladder/kidney area. If suspicious areas are seen the next step is a TURB (transurethral resection of the bladder) which is an out-patient surgery where all visible tumors are removed and samples are sent to a pathology lab for analysis. Only after the path report comes back (and this can take a week or so) is a definitive diagnosis made.

Hope this answers a few of your questions!

Sara Anne

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

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