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Gross hematura for 6 months
I hate to post again BUT, this is the last option to find answers! I’ve been bleeding literally in my urine for a long time, 6 months, maybe longer! I’ve had bladder cancer and treated in the past. When the bleeding began that was my first thought! I’ve seen a urologist who couldn’t do a cysto in office because my bladder was filled with blood. So two times I’ve been in the hospital for the TURBT and both times nothing was found. The blood gets increasingly dark in my urine and sometimes I have pelvic or back pain. Has anyone else experienced this or heard of it? Please help!
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9 Replies
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No. no! You are a bladder cancer survivor! And, you deserve to be heard. As a couple of us have said I believe a second opinion is really a good idea. A teaching hospital or university setting as Cynthia indicated. They usually are into cutting edge treatments and diagnosis and I am sure THEY would like to study YOUR situation as perplexing it is. You deserve the best!
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.
Alan and Cynthia,
I don’t mean to be a bother to anyone! I have resigned my ‘condition’ to being normal for me…partly due to Alan’s comments and also the barrage of negative tests!! It wasn’t until I began seeing sizable blood clots a couple days ago that I again got worried. Perhaps I don’t belong in this group.
Gina,
Please seek a second opinion at a university hospital with a designated urology department. Even if you feel the doctors you are dealing with are great a second set of eyes can be very important. Let us know what state you are in we may have some suggestions.
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
I don’t know what to say! It would concern me also but, as said in an earlier post I know 2 other people that experience this. Perhaps an internist or the retro-pylogram my wife had is in order as another test? You’ll remember on that test we found no known cause and she is still here 30 years later. Perhaps someone else will have other ideas? Maybe even a second opinion for fresh eyes and 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’ve had gross Hematuria for a little over a year now…time between occurrence became shorter with time and for the last 5 months or so I’ve had continuous gross Hematuria getting worse with time. I have ‘good’ days where my urine is pink but you can see through it to days that appear to be blood…I’ve had a CT scan that showed an enlarged lymph node near the kidney…that led to a pet scan which was negative. I’ve had 2 cystos both negative. I’ve resigned myself to this being an unknown reason causing this…showing signs of anemia for the last 2 months I began taking over the counter iron with little result. Starting today I had a significant blood clot in my urine…any comments?
Thank you again! I guess I’ll just wait and see!
It is possible to have hematuria with unknown causes but, it is rare. I personally know 2 women that have experienced this one told me she still passes blood once in awhile. My wife also was suspect for cancer some 30 years ago and we never found a cause although a passed stone was suspected. She had a retro-pylogram on top of the other tests that look up into the kidneys with nothing found. As you have had bladder cancer, I personally would try to get a second opinion for peace of mind and “fresh” eyes.
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.
Alan so, if sometimes no reason is found then, bloody urine can be normal?! I did forget to mention that a CT was done and nothing significant was found.
Because you have had bladder cancer I would have a few more tests myself and if need be get another doc if they won’t do more than a cysto. I am talking about a CT Scan to read the torso to rule out other issues. Can be as simple as a stone. Sometimes a reason is never found. Keep in mind no one here is a doctor just people than have been there done that. Keep posting as you have more questions.
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.Sign In to reply.
