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Not diagnosed yet…waiting and stressed out!

1 week 5 days ago #59234 by sara.anne
That is GOOD news, Nancy!!

Just a quick note, however. The cause of urinary blood in most cases is never found. A few turn out to be bladder cancer. My father had visible blood show up in his urine ONCE and he did go to his doctor. Kidney cancer!!

Because of the number of cases where no cause is ever found, many primary care docs do not do a urinalysis in a general exam. One wonders about the economics of this; many "useless" tests and a few cases of bladder cancer found earlier. If I were one of the patients with bladder cancer....................

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 week 6 days ago #59233 by PNW_Female
I wanted to provide an update in case others reading this have similar symptoms as mine. I had my cystoscopy this morning and I have NO cancer...yay!

I'm one of the rare people that have both gross and microscopic hematuria with no reason found - no infection, etc. This same thing happened to me 5-6 years ago. I've now had both the cystoscopy and the CT scan that came back normal. However, my doctor wants me to come back in 3-4 months for a recheck (office visit and general exam) and then annually. If anyone unusual comes up, then she'll do another cystoscopy. I believe she thinks I'm at a greater risk given my circumstances.

I do want to thank all of you on this board for providing an outlet for others to share their stories, issues, etc. I hope I never have to join this group, but I know if I do that I'll have a great support system with this forum.

Nancy

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2 weeks 2 days ago #59214 by PNW_Female
Thank you so much Sara Anne! It's been so stressful and the days are going by so slow. I'll provide an update after my Cystoscope on Wednesday.

If anyone has experienced previous bladder cancer symptoms and later (maybe years later) found out they did in fact have bladder cancer, I'd be interested to hear your story.

Also, can you have an actual UTI (i.e, there was nitrites in your urine) and it still later be determined to be bladder cancer? I did have some nitrites in my urine when I had gross hematuria, but the last two times I had microscopic hematuria, there was absolutely no UTI.

Thanks,
Nancy

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2 weeks 3 days ago #59210 by sara.anne
All I can tell you is that while urinary blood can be a symptom of bladder cancer, more often than not there is no bladder cancer present. In many cases no specific reason is ever found.

The cystoscopy will tell you a little more about what you might be facing.

Wish I could look into my crystal ball and give a more specific answer, but......

Please let us know what happens next week!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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2 weeks 3 days ago #59209 by PNW_Female
Hello! I’ve been reading all your posts for the past few weeks and the information has been incredibly helpful!

Here’s my story:

I’m a 55 year old female and had gross hematuria (visible blood in urine) about 5-6 years ago with no cause found. I dodged that bullet and I'm grateful for that!

Two months ago I had gross hematuria again and went to Urgent Care. They gave me antibiotics (Macrobid) for a UTI but they didn’t do a urine culture. I took that for 5 days but after a week the symptoms started to return so I went back to Urgent Care. They said I still had blood in urine (microscopic this time). They said that I probably had a different type of UTI so they put me on a different antibiotic. They took a urine culture this time. A few days later, it came back negative for a UTI. I finished the antibiotic assuming that maybe it really was a UTI but it just didn’t register since I was on antibiotics for a while and I was on the tail end of the issue.

A month later (late February), I felt another UTI coming on and left work early due to the urgency and pain. I did an “at home” urine dipstick test and it came back positive for blood (not visible). However, by the time I went to bed that night, the pain stopped and no blood in urine. I met with my Urologist the next day.

My Urologist ordered a CT scan which came back normal. I have a Cystoscopy scheduled for March 18th (it will now be about 2.5 months from the latest onset of blood in urine). I’m not having any real symptoms at this point, except for some irritation “down there” and being a bit more tired than usual.

I’m trying not to stress about all of this and hoping I’ll once again get the answer that there’s no reason for the blood in urine like I did 5-6 years ago. However, I also read that you’re more at risk for bladder cancer if you’ve had gross hematuria in the past. I’m interested to hear your thoughts on all of this. I’m hoping for the best but of course am concerned for what the diagnosis may be. I'd appreciate your candid responses. Thanks so much for this board and support group!

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