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Gross Hematura

8 months 4 weeks ago #56481 by gina
Alan actually your words are very comforting! I appreciate your sharing this with me! One question though..had either of these ladies ever had bladder cancer? Thank you again! This gives me something to focus on...or should I say hope for...☺️

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8 months 4 weeks ago #56480 by Alan
Gina,

I know this won't reassure you much but, I have 2 friends (both are woman) that have gone through what you describe (neither had l;adder cancer). Both had hematuria and one of them still bleeds once in a rare while after 30 years. Also, my wife had a similar situation 25-30 years ago. Did all the tests: CT scan, cystoscopy and a retro pyleogram and nothing was ever discovered. Her passing blood quit a few weeks late. She is still around and doing well. Sometimes it appears the body is just doing its thing?

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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8 months 4 weeks ago #56479 by gina
I had a pet scan and a cysto..neither of which showed cancer!...this the wait period...the thought being the bleeding would stop...it hasn’t...in fact as it continues to come and go...it has gotten worse! In the beginning I had no pain, now I have vague flank and pelvic pain. Sigh, I agree that questions are needed...but doctors tend to view their own thoughts as more reliable than those of the patients...I’m scared!

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8 months 4 weeks ago - 8 months 4 weeks ago #56478 by Jack R
Gina

Thoughts -based on my experience and your 11 year journey.

My present care team (along with prior care teams) is used to me asking tough questions and demanding answers. I would be concerned about and asking things such as:

Scheduling a resection indicates there is something to resect ? Is there a known or suspected cause ?

If s/he can't see anything through the blood, why was the bladder not flushed and the bleed source located ? I am told that it is easier to find a bleed while it is active.

Unless there is an expectation of "healing" I would be climbing walls before three months. Why the 3 month wait to follow up ? What is the plan in 3 months IF the bleeding stops ? If bleeding continues ?

Best
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis

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8 months 4 weeks ago #56476 by JigStep
Hi, Gina. I've been checking this site for a couple of months to gather info, and decided it was time to register. l had my second TURBT this week and received a decent pathology report today. I'm pretty new to this, so I can't offer much in the way of advice, but I am wishing for a favorable outcome for you. Waiting for information can be so nerve wracking. Peace. Stu (aka, JigStep)

7/18 Gross hematuria
8/18 TURBT, papillary urothelial carcinoma, T1 LG
12/18 TURB, benign urothelial mucosa, focal features consistent with cystitis cystica
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8 months 4 weeks ago #56475 by gina
:(

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