Need advise

16 years 4 months ago #9932 by mznoregrets
Replied by mznoregrets on topic Need advise
Hi Mimi,

I had hematuria start this time last year.
Had a scope in mid December 2006 - saw nothing.
Continued gross hematuria.CT scan mid Jan showed nothing.
Scope done Jan 29, 2007 - saw something.
TURBT Jan 31 - T2 grade 3 micropapillary.
I was treated at Mayo's in Minn after that. I was just told last month I will have 3 month checks for 3-4 years as my cancer was aggressive and like a freight train. I had another TUR on 2/14 to get margins and biopsy bladder neck. Had RC on 3/13 and it was T3 at pathology.
Not sure if anything I did went normal lol - I also had urachal cancer - belly button , very rare. Best of luck, Holly

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16 years 4 months ago #9928 by mimi
Replied by mimi on topic Need advise
My urologist is very well respected and I trust him implicitly. My daughter works with him in Surgery and says he is the best. Horseshoe kidney can cause Hematuria as can Exercise. I exercise alot and all of my episodes have been after exercise. I have had the Gold Standard for Hematuria Evaluation and everything was clear.

I have called my Urologist office and I am waiting for them to call me back to see what is next. My Uro will be very thorough.

I know that there is always the possiblity of BC, but I think further testing would be in order before seeking another opinon.

How many of you did not have your cancer found during the Cystoscope? Just curious.

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16 years 4 months ago #9923 by flamenco
Replied by flamenco on topic Need advise
Kathy, I·m not a doctor either, but would advise you to try and see a good urolgist, and get another opinion. I was diagnosed with bladder cancer which had given no symptoms until I was given an anti inflammatory injection, followed by haematuria, and then aspirin,several months later, same result. At least to put your mind at ease. I had been led to beleive that I had injured a kidney, and had I not taken aspirin months later , perhaps would not have had symptoms that made me seek another opinion soon enough. Please don·t worry unduly, you sound as though you·ve had the most important checks done, but don·t be fobbed off if you·re not 100 percent happy with the answers your doctors are giving you.

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16 years 4 months ago #9917 by marigold
Replied by marigold on topic Need advise
I am not a doctor. But if I were in your position, I would request a FISH test from the uro oncologist. If negative, I would focus on the horseshoe kidney issue.

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16 years 4 months ago #9915 by mimi
Replied by mimi on topic Need advise
No, I did not know that I had a Horseshoe Kidney until they did the CT Scan. The CT scan did get the kidney and ureters and showed no abnormality other than the Horseshoe Kidney. Same with the Renal Ultrasound. I know that most Horseshoe kidneys are found by accident unless they are discovered pre-natal or as children. When they do become symptomatic, gross hematuria is one of the symptoms.

It has only been 3 months since I had the cystoscopy and 4 months since I had the CT Scan and the Ultrasound. What other test could they do other than what has been done? Also, after a year from the first incident of GH, wouldn't something show on the CT Scan/Cysto by now if there was anything there?

Thanks
Mimi

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16 years 4 months ago #9914 by Patricia
Replied by Patricia on topic Need advise
Kathy..a couple of things to consider regarding a horseshoe kidney

Horseshoe kidney occurs in about one in 500 children. It occurs during fetal development as the kidneys move into their normal position in the flank area (area around the side, just above the waist). With horseshoe kidney, however, as the kidneys of the fetus rise from the pelvic area, they fuse together at the lower end or base. By fusing, they form a "U" shape, which gives it the name "horseshoe."

One-third of individuals with horseshoe kidney will have at least one other anomaly or complication involving the cardiovascular system, the central nervous system, or the genitourinary system, such as the following:

kidney stones - crystals and proteins that form stones in the kidney that may lead to a urinary tract obstruction.


hydronephrosis - enlargement of the kidneys that usually results from a urinary tract obstruction.


Ok that being said...one of the really rare side effects of ibuprofen can be urinary tract bleeding.....its very rare. I think since your CT was clear of BC that perhaps a consult with a nephrologist might be more in order...and i would stop the ibuprofen for a while and see what happens. Have you had follow up on your congenital condition or is this the first time you've heard of it? Hydronephrosis can also cause bleeding. So i think now you really need that Kidney specialist consult. Pat

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