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No diagnosis yet...

12 years 2 weeks ago #16606 by jj22

Thanks tate.

FWIW, I'm in Colorado Springs. If it comes down to it, I'd love to hear good recommendations in the CS/Denver area.

This is not my first frustration with my current doctor's office. The doc himself is a great guy, but the administration is even more scattered than I am. A few years ago I passed out in an auto parts store, and woke up on a gurney in the hospital with friends and family looking down at me. They did a CAT scan and released me. Later, I had an MRI. I saw a Neurologist. I wore a "halter monitor" (?) for a day. Turns out nobody outside the ER saw the CAT scan. The Neurologist never saw the MRI. The doc never got the report from the Neurologist or the halter monitor. Good thing they weren't dealing with matters of life or death. (Who does, BTW .... ??? ) Nobody ever diagnosed anything. Wait and see if it happens again...

Anyway, thanks for responding. I only have internet here where i work, but every time I Google anything having to do with cancer or bodily functions, somebody wanders into the office and wants to stare at the screen while they talk. (Am I sounding frustrated ?)

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12 years 2 weeks ago #16603 by tate
Hey jj22,

I can answer a few of your questions and certainly understand your frustrations. There are alot more people here that will have more details and will reply with their stories (even though we all may have different symptoms).

For me-
1.)my bloodclots in urine were big & mostly bright red not so much brown. I had them last year a few times and earlier this year they started every other week. They were pretty big and there was only a couple of times that the toilet was just full of blood. by the time I got to the Doc's- they did not see blood in urine. I thought I was crazy.
2.) yeaah, we will let a man answer that
3.) All of my test ctscans/x-rays/urine path. came back fairly normal. When i had my cysto. my doctor rolled back and said..."you've got bladder cancer" I am not sure that is the norm. even some doctors I work with thought she should have said that she suspected I had b/c or that she wanted to wait until the biopsy. For me however, it was easier to deal with b/c earlier then having to wait even longer. The waiting really sucks.

there are alot of people on this site that will give you great advice on finding the right doctor...they may not be online tonight (I know some are traveling this weekend)but I know they will ask you where you live... because IF you do have b/c they will help advise on getting expert doctors/medical centers.
This group is wonderful and you are doing the right thing by trying to investigate.

btw...primary doc/sue story -NOT cool!! Shame on them...I hate hearing stories like that!!!

I am not the most "seasoned person" with the group. I have Ta b/c and start my 1st BCG treatment on the 15. I had my surgery 4/17. I just wanted to let you know that someone was here this evening and I will certainly be thinking of you and keeping you in my prayers.

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12 years 2 weeks ago #16601 by jj22

Hi All,

I haven't been diagnosed yet, but its looking (to me) like a good chance that I have bladder tumor/cancer. In the meantime I'm doing whatever I can to learn about the situation and prepare for the worst; good news is always easy to take. Here's some background, and a few questions towards the end.

I'm male, 44, out-of-shape, high-fat diet. Non-smoker, but 15-20 years ago I worked with lots of nasty organic chemicals (some of them PAH - polycyclic aromatic hydrocarbons), and because I was young and foolish I was not very careful with them.

About 6-8 weeks ago, I was shocked to see _lots_ of blood in my urine. Called the doc's office, and since he wasn't in, saw a PA instead. He said it was probably an infection, and couldn't be stones (no pain). The UA came back negative for UI infection, so he figured it had to be a prostate infection. After 3-ish weeks of antibiotics and another urine sample (and PSA test and prostate exam), there was still detectable (but not visible) blood in my urine, still no signs of any kind of urinary infection. This confirmed (!!!) the PA's belief that it was prostate infection, and he set me up with more antibiotics and scheduled a final "clean-bill-of-health" UA for when I finished the prescription. Everything I have learned since convinces me that he was totally wrong. Lesson : you have to take charge of your own health care.

By co-incidence, I had an appointment with my primary care doc (an actual MD) who totally disagreed with the PA. He ordered a UA and a blood test and scheduled a 3-week followup. When I came in for the followup he asked if "Sue" had called me. "Who's Sue ?" Based on the test results, the doc had ordered a C/T, IVP, and cystoscopy. Nobody got the memo; at least not Sue. So here I am half a week later, I have the C/T and IVP appointemnt scheduled (Thursday, 5/15), and I'm still waiting for the urologists office to call me so I can schedule the cytoscopy. <grrrr...>

Anyway, during the intervening period I had "somewhat visible" blood in my urine on several occasions, and very bloody urine once more (i.e., one episode that lasted about 3 successive urinations or so). On the morning of my most recent appointment, I started a third episode of heavy blood in urine. After the appointment I used a urinal at work that has slots in the porcelain for the urine to flow down (i.e., it's not filled with water) and in addition to the heavy blood, I saw "chunks" that remained in the urinal. Not hard, crystalline grains like I would expect if it were stones, but soft-looking flecks of stuff that (if I am remembering clearly) were pinkish-white. I've replayed that picture in my mind so many times I can't remember the color for sure, but I do know that they weren't dark red/brown. Also, for most of this time, I haven't had any real pain or discomfort, but since my last appointment, I have had a feeling like someone pressing on the front of my bladder with a finger.

For now, all I can do is wait and learn. I have a few questions for the "seasoned pros" out there..

Q) I've heard that sometimes bloody urine is accompanied by blot clots. What color are they ? I'm guessing dark red/brown (like dried blood) but maybe that isn't the case.

Q) (men) How painful is the cystoscopy ? I've read that the instrument is as big around as a pencil. OMG !!! Is that true ? I would have guessed that anything bigger around that a normal stream of urine just wouldn't fit....

Q) Do the various technicians/docs (IVP, C/T scan, cystoscopy) actually tell you anything about what they see or do they just keep a straight face and tell you the results will come "later" ? If thats the case, how much time goes by before you actually get an answer ?

Thanks for your help.

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