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Gross Hematuria – past UTIs
I have gross hematuria and high proteins in my urine with high red blood cell count.
I am a veteran and my only health choice is the VA.
I had last November a CT Urogram – no cancer, local non VA company
I had a Cytology done by the VA within the last week, no lesions, no tumors, but my prostate was red the doctor said.
He called to tell me that the urine cytology result was negative, but I have no reports that I can find when looking up my records with the VA in MyHealtheVet regarding this result.
Should I trust the VA in regards to the urine cytology results. I have read not always are these accurate?
Is there any test that I can do other than another Cystoscopy to detect bladder cancer? i.e. new methods
Should I go in and do another one in a few months and pay a local provider to do this, not sure what the cost will be and for the labs? Next year I am going on my wife’s insurance to eliminate the need to go to the VA.
I am also on blood thinner Eliquis which the doctor said that may be the cause of my prostate being red, possibly where my hematuria is coming from.
I also had a prostate exam nothing wrong with it according to the doctor.
I am worried that the VA may have missed it, since after 1 week I still feel a sensation in my penis near the head of it.
I am married and I have never cheated on my wife and vice versa, so I know it is not a STD.
I am on antibiotics for a possible UTI, taking Bactrim for 7 days.
I have read if you catch bladder cancer early enough they possibly can remove it, true or not?
Thanks,
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8 Replies
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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
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.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.
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.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?
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
Forum ModeratorShould I ensure that I get the report to ensure they did the urine cytology like they said they did?
Welcome!! I can understand why you are worried….anyone would be!
First, there are many many reasons for urinary blood and most of them have nothing to do with bladder cancer. I assume that since you mentioned “another cystoscopy” that you have had one, plus a CT-urogram, plus urine cytology. Those are the procedures and tests that any good urologist would do in a case like yours. The fact that you are on a blood-thinner could also be contributing.
A word about urine cytology…it is very non-specific and is notorious for resulting in false positives, meaning that it shows a problem when there is none. This is the nature of the tests, not due to any incompetence on the part of the VA.
You have had all the tests currently considered the standard for checking for bladder cancer. Yes, it can be highly treatable when found early but it appears that no sign of it was found. You should report any symptoms that you continue to have to your doctors and they should continue to look for a cause other than bladder cancer.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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