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My Doctor Appt Today--A Non-Event

12 years 2 months ago #18692 by Jill
Thanks Ro, I sure will. I'd love to be one of the lucky ones, and I may be, but I'm not going to ignore the fact that I still have hematuria and have now for a couple of months. So I'll definitely make that Oct 2nd appt...

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12 years 2 months ago #18689 by Rosemary
Jill, I'm not saying that you have bladder cancer or that you will have bladder cancer. I don't want my story to frighten you, but, 8 years before, diagnosis, I was urinating pure blood in the toilet. I made my own appointment with Urologist, he did a catherized urine catch and told me that the bleeding was not from my bladder. I never found out what that was about. After that, when I had blood in my urine, I pooh poohed the idea of a bladder issue. I pooh poohed up to the point when my Gyno said, "You are going to the Urologist!" and I said, "But, it's not suppose to be coming from my bladder."

My point? Stay on top of it....

Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
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12 years 2 months ago #18683 by Jill
Hi Pat--thanks so much for the info. That article was great, and I hadn't found it. One thing it talked about is that up to 10% of people with hematuria don't ever find the cause. I've heard that, but it seems surprising to me. Also, some of those people end up with BC or some other disease, so the frequent follow-ups are important.

I know you're not suggesting the results are wrong, and I agree, second opinions never hurt! I'll check into both of those places and see if I can get them to look at the records.


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12 years 2 months ago #18675 by Patricia
Hi Jill..well i think they've done all the right things and are following up. I was just thinking another set of eyes looking at the CT images and tests wouldn't hurt without your having to be there....for instance Johns Hopkins and The Cleveland Clinic will give second opinions on things like this and i'm sure there are many others. (Those are the 2 top Urological hospitals in the U.S.)
I did find a great article on hematura with some further links...you may have already read them but just in case....
Please know i am in no way suggesting your results are wrong...i'm just an advocate for getting second opinions on about everything.
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12 years 2 months ago #18667 by Jill
Hi Barb--the CT scan was clear for the kidneys and bladder. I just did a 24 hour urine capture, which was to test for protein, which addresses kidney disease. Are there other kidney tests?

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12 years 2 months ago #18666 by Barbnks
Jill did you say that had checked your kidneys? I had blood in urine turned out to be mass (cancer) on my kidney. I would sure have it checked out. Just my 2 cents worth.

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