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Gross hematura for 6 months

1 month 2 weeks ago #58431 by Alan
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.
The following user(s) said Thank You: gina

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1 month 2 weeks ago #58428 by gina
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.

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1 month 2 weeks ago - 1 month 2 weeks ago #58426 by Cynthia
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

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1 month 2 weeks ago - 1 month 2 weeks ago #58424 by Alan
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.

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1 month 2 weeks ago #58421 by gina
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?

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3 months 3 weeks ago #58048 by gina
Thank you again! I guess I’ll just wait and see!

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