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Long Story...Recurrent Hematuria, Investigated, Questions

1 week 19 hours ago #56391 by carlton

Alan wrote: Please see my response on your other thread. We have multiples to where I sometimes lose track of who is who and what. I will add to that thread. My wife had a retro pyelogram for the same questions you have had as well as a CT scan, cytology and cystoscopy. I personally know 2 more people with no known causation. We NEVER found a reason for hematuria. The RP will check further and into the kidneys. There arre MANY reasons for passing blood and bladder cancer is in the minority. Passed stones, infections etc. Long distance runners and bikers are often found with hematuria. For peace of mind go ahead as your URO suggested that. I am pretty certain at the end f the day that will be the end of things! You will do well!


Thank you very much, Alan. I hope I end up being as lucky as your wife. It definitely gives me some hope. I appreciate you taking the time to help me out.

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1 week 20 hours ago #56389 by Alan
Please see my response on your other thread. We have multiples to where I sometimes lose track of who is who and what. I will add to that thread. My wife had a retro pyelogram for the same questions you have had as well as a CT scan, cytology and cystoscopy. I personally know 2 more people with no known causation. We NEVER found a reason for hematuria. The RP will check further and into the kidneys. There arre MANY reasons for passing blood and bladder cancer is in the minority. Passed stones, infections etc. Long distance runners and bikers are often found with hematuria. For peace of mind go ahead as your URO suggested that. I am pretty certain at the end f the day that will be the end of things! You will do well!

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 23 hours ago - 1 week 23 hours ago #56383 by carlton
OK...I received the following message back from my Uro a few days ago. I have a follow up consult with him on Friday 12/14, so a week from tomorrow. I plan on asking him some questions in person then, but my anxiety is really quite high right now, and I do believe this was reflected in the initial message I sent to him that prompted this response:

"Tell him that both previous tests were thorough and very reassuring.We do not routinely check cytology as accuracy is poor. I think he should repeat cysto in near future and will consider sending cytology.". He has given an order to schedule you for cystoscopy with retrograde pyelograms. If you have further questions about this study, please send another message or call the office."

OK....question for anyone that might feel like answering. Do you think this is a case where he would be willing to do this second Cysto, with the addition of the retrograde pyelograms simply to reassure me and my anxiety? Or do you think he honestly wants to recheck? His first sentence leads me to believe that he is just willing to do this to assuage my fears, and that he thinks it unnecessary.

Also, why add the RPG? This will surely make it more expensive, and I did have CT Urography done already. They cannot schedule any of this until after the New Year.

I am almost feeling like giving up on the whole thing. I haven't had recurrence of visible blood since 11/14. Though I did take ibuprofen for 4 straight days due to a bad cold and associated headaches, and on the 4th day, I got some small black/brown flecks in 2 separate urines. they were extremely small....like pieces of pepper. The first had maybe 3-4 flecks. The second only one. Not sure if these were mini-clots, or what, but the urine did not test positive for blood on my strips, which I have control tested to make sure they work. Maybe they were nothing. I stopped the ibuprofen that day, and have had no flecks in my urine since. And again, no visible blood since 11/14, when I stopped my Trintellix and Turmeric.

Is it possible that I could somehow have acquired a tendency to get hematuria from medications that can cause abnormal bleeding? I am grasping at straws here trying to comfort myself. I am scared. I am mad that I might have to pay $1,000s more for tests that will HOPEFULLY show nothing.

I want to just trust the first tests I had, but it's so hard to do so when symptoms recurred. I am rambling, and I guess I will just have to wait to ask my doctor all of these questions in person a week from tomorrow. My mind is racing, though, as my anxiety has totally taken over, especially since I did stop my Trintellix and am curently not taking any anti-depressants for the first time in years and years.

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1 week 6 days ago - 1 week 6 days ago #56329 by Alan
Adding to the thread. First, the second opinion could be a good move and should give you peace of mind if you that route. I also add some experience on the hematuria front. As you are already aware there are many causes from irritations, stone, infections etc. Sometimes long distance runners and bikers experience this also due to jostling the "innards"from what I understand. What I do want to add is sometimes a cause is never found. I personally know 2 people that have gone through that as well as my wife with no causation found. Some 30 years ago we did all of the tests including a retro pyleogram which goes all the way to the kidneys with contrast dye and after ALL of the tests nothing was ever found....so it does happen. She was also an RN (now retired) so she listens to her body! This may not help your anxiety but, now you know someone else in the same boat.

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 6 days ago #56327 by EdFlaherty
Thanks Sara Anne!

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2 weeks 1 hour ago #56323 by sara.anne
I remember when I was first diagnosed thinking "well, at least I know what I will die of." That was almost 11 years ago and I am still here with no signs of bladder cancer!!

And one small correction...this Forum is NOT just for people who have been diagnosed....It is for anyone dealing with even the possibility of bladder cancer plus their loved ones and caretakers!!:)

Sara Anne

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