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Gross Hematura
I have had visible blood in my urine for about two months now. It comes and goes, sometimes worse than others. I’ve had a pet scan which was negative and a cysto showing no cancer…still I bleed, sometimes so bad my urine is red through and through. The urologist told me to come back in three months if it continues! I’m worried, having had bladder cancer twice in the past…
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7 Replies
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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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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. -
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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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
6/2015 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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021 -
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, LG, T1; 12/18 TURB: benign urothelial mucosa, cystitis; 9/19 TURBT: papillary urothelial carcinoma, HG noninvasive; 6/20 TURB: NED, inflammation; 10/21 TURB: NED, inflammation. -
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Ok…so every test they did several months ago was negative…the bleeding continued, in fact it’s gotten worse! The urologist did another cysto today…there was so much blood he couldn’t see anything! He is scheduling a cysto where I am asleep and will do a biopsy at the same time. Any thoughts?
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