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Gross Hematuria - past UTIs

6 months 1 week ago #57546 by Cynthia
It sounds like due diligence has been done by your VA Urologist, if they have checked both the upper and lower urinary track. If you have experienced hematuria for eight years caused by bladder cancer and it has not progressed to the point it can be easily detected I would have to imagine it would be one for the medical books. There are over a 1000 different reasons for blood in the urine some benign some times they never know the cause and it does no harm, bladder cancer is only one cause out of that 1000. I would make an appointment with your doctor go over your concerns and ask if it isn’t cancer how do you get answers? Please let us know what you find out.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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6 months 1 week ago - 6 months 1 week ago #57545 by Alan
Without being a doctor all I can guess is the cystoscope did a little but/recoverable damage to your system. I tell myself the scope is more "uncomfortable" than painful as it is over in 30 seconds through the prostate. Yes, I pee razor blades for 3 to 4 voids plus the tip of my penis will "tingle/itch" and feel strange sometimes. I am sure most experience the razor blade for a few days. I remind myself that if this is the worst after cancer 11 years ago, so be it. Excess protein in the blood with my limited knowledge would be more of a kidney function.

Some people also will fit outside any norm. My heart rate runs around 48-55. I remind my cardio I have ALWAYS run slow to norm as every visit he panics. I am not symptomatic of anything else. World class athletes (of which I am not but I am in very good shape for a 66 year old) will run high 30's to low 40's. I say this just to point out after 8+ years your body may simply be one that passes abnormal (but normal for you) amounts of blood.

As always as none of us are doctors here I would just advise whoever you see communicate ALL clues/symptoms to help no matter how small. Right now I would tell you have to trust your doc sometime or get a second opinion from another URO for peace of mind.

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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6 months 1 week ago #57544 by murpcsm49
I am worried due to a weird sensation when I pee and it is near the tip of my penis.

It is not a burning sensation, not painful, but not normal. I am not sure how to describe it.

I had the Cystoscopy on April 29th, and I have been on Bactrim antibiotics since last Friday, May 3rd.

I explained that to the VA Urologist, but he said he couldn't determine the cause.

I have lots of protein, gross hematuria, large amount of Red Blood Cells, should I worry at all?

There have been numerous reports of the VA misdiagnosing cancer in the past or not at all.

I have had hematuria in my urine for 8 years now, previous Cystoscopy was done around that time, then the one on April 29th, which is the reason I am concerned, had I known I should do one every 3-4 years I would have.

They hurt something fierce when they push through the prostate so I really dislike that feeling and the razor blade feeling when you pee the first two days afterwards.

Without the report I am concerned the VA doctor could have missed something, he didn't even take a biopsy.

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6 months 1 week ago - 6 months 1 week ago #57543 by Alan
Welcome and thanks for your service,

The Ct Scan and cytology are invasive tests! Cystoscopes can irritate the urethra, scrape, make an UTI more accessible while the Ct scan exposed you to radiation and the dye can cause problems. So, you have done what is needed without inviting more problems. They are also the standard protocol along with the less reliable cytology test for bladder cancer.

I say this because my wife was in the same situation some 30 years ago with unknown bleeding. She did those tests and what is called a retrograde pyleogram which checks all the way into the kidneys. Now that is really invasive. We NEVER found the cause! Could have been an imperfection in the kidneys, ureters, a stone may have nicked somewhere in the tract. The point is there are people who never find any cause. BTW, she is still alive and doing well! One last item, I know 2 more people, one that still passes blood intermittently where they never found out why.

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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6 months 1 week ago - 6 months 1 week ago #57542 by murpcsm49
So what do you trust then, he did a cystoscopy last week and a CT Urogram last year and both were negative?

I mean is there any other test that I can do that is noninvasive?

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6 months 1 week ago #57541 by sara.anne
That is totally up to you. My private urologist just tells me the result. Since I don't really trust urine cytology I am not that interested in it.

Sara Anne

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