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New - blood in urine - waiting for more diagnostics - love some guidence

1 week 3 days ago - 1 week 3 days ago #56576 by Alan
Xanadu,

Just a quick observation about tests and numbers. I am not up to speed on PSA numbers. Yes, they are important but, I always say take any with "a grain of salt" as the old saying goes. Same goes with any numbers a doctor reads. Taking myself. My heart rate has ALWAYS run 50-55 all of my adult life. "Regular" BPM according to cardiologists is 60-80 for males at my age. My cardio guy was so concerned he wanted me on a pacemaker without asking if I was always 50-55 and rarely 45-47 and a few times 60. I told him he could forget that idea....now watch me pass in the next 30 days...LOL at myself. I am not faint, not symptomatic in any other way. World class athletes (of which I am not however I am in pretty good shape for 67) will often run at 40 BPM. I have other slightly "off" numbers for other functions in my body all my life as MOST people do in something. They are just our numbers. The point I am trying to get too is: numbers are a guide but, don't get to wrapped up in them. There is no "perfect" body!

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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1 week 3 days ago #56575 by iXanadu
I hope this reply "stacks" properly. This is a response to everyone that has to take time out of their day to provide feedback and share their experiences. Thank You - one and all.

I've decided to "share" as much of this journey more for anyone that stumbles across this in the future with similar symptoms and test results. I'm still holding out for a positive outcome once all the tests and poking and prodding are complete. Maybe this will be comforting to someone later on.

My CT Scan is tomorrow. Yesterday my NP friend instructed me to get a PSA screen and a Urine "culture". Additionally, my Urine "analysis" results finally posted on my dashboard.

Urine Analysis - shows mostly negative results. The exception is higher than preferred proteins in the urine and of course the large amounts of blood. I've given up trying to google diagnosis this, but if I didn't, I would add kidney function to my list of concerns.

PSA:
+ PSA, %FREE 25
+ PSA,Free (.1 ng/mL)
+ PSA, Total (.4 ng/ml).

My NP friend tells me that this is "elevated' and to bring the results to my urologist appt on 1/21.

Urine culture is not back yet.

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1 week 3 days ago #56574 by camry321
Good luck on your CT scan---hopefully it is with and without contrast. The dye may make you feel warm and get a racing heart briefly. Nobody told me that and I panicked but mild reactions are normal. Post any results you get.

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1 week 3 days ago - 1 week 3 days ago #56572 by Alan
From what I understand, yes, cysts and kidney stones can easily cause bleeding . Microscopically and visibly. Also, sometimes a cause is never found. Just keep in touch with your doc as these questions should be asked and perhaps it is time for annual testing instead of every 2 years to be safe. Might be as simple as leaving those questions with his nurse and she can relay back as that usually elicits a faster response.

Your CT scan and cystoscopy are the "gold standard" in detecting bladder cancer so you are doing the important things.

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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1 week 3 days ago - 1 week 3 days ago #56570 by camry321
I had microscopic hematuria 2 years ago---and every test since then. I had ultrasounds and cytology. All good. A year ago I saw a urologist who found little wrong. I had CT with and without contrast. Found kidney stones and simple cysts. Had cystoscopy---bladder was fine. I was hoping someone could tell me if kidney stones staying in kidneys or simple cysts could cause blood in urine every test.

I got my results on tests quickly. We have an online chart so I could check results there. I do not know if they would do that if the results had found anything.

They told me to have retests in 2 years unless pain (there is none) or gross hematuria. I had pink blood twice in the last few months one time each, so I'm not sure what to do . I felt relieved after all the tests, but now not so sure. My advice to you is to do all the tests. If they find nothing, ask questions. I was told that sometimes they don't find a cause.

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1 week 4 days ago #56569 by iXanadu
Sara.Anne,

Thank you for your response. This response was one of the more useful things I've read since my saga began. Not too long before you responded - I spoke with a friend that is a Nurse Practitioner. Her response was similar to yours - don't get too far ahead of the tests - there are many things that are NOT bladder cancer . . . At her direction, I went to a DIY lab and got a urine culture and PSA test going. She felt a culture would provide more useful information about infections than a straight urinalysis, and since the prostate factors in so closely to these symptoms, knowing what might or might not be going on with it would be helpful. Hopefully, by the end of the week, I'll have the results from these labs and the CT scan scheduled for the 9th and can get a hint of what lies ahead. I'm trying to practice "mindfulness" - so that I'm present in what is present, and let this take whatever course it will take - but that is easier said than done.

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