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Question (I'm new here and not diagnosed)

2 years 8 months ago #55184 by thelongroad
I had the same cancer, was diagnosed 10/8/2016. I had the same operation, my lympnodes and vagina was also removed. I am still under watch, but has been in remission.

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5 years 1 month ago #50039 by Mirpurlady
In reading your posts, you've reminded me of something I haven't mentioned in my own posts. UTIs are suspected to be a risk factor in bladder cancer, and they certainly seemed to be in my case. In going over my medical history, doctors were always surprised that I had none of the typical risk factors, like smoking, overweight, etc. But I did have regular UTIs. They were often asymptomatic, meaning I had no fever, burning, or other indications of them. They would just show up on a lab report when I was going to the doctor for something else. I never thought much about them, and was never worried about them, as I figured if they weren't bothering me I wouldn't be too bothered about them. I now realize that the constant irritation in my bladder might be the one thing that made me more receptive to getting bladder cancer. I had never even heard about bladder cancer before I got it, so it certainly never crossed my mind when I had UTI's. The kind of cancer I had was an aggressive squamous cell bladder cancer, not the normal kind. But it did result in a hysterectomy and bladder removal, so pay attention to those seemingly insignificant UTI's!

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5 years 3 months ago #49572 by acherry317
Thank you!

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5 years 3 months ago #49571 by sara.anne
Welcome! Your story resonates with me, because with one exception, it could have been mine!

I had UTI after UTI for about a year. I would call my primary care guy and he would phone in a Cipro prescription. Went for my "annual" (it had been three years) pelvic at a women's clinic for a change and saw a wonderful nurse practitioner. I just happened to mention the UTI's. She told me in no uncertain terms that if you have more than 3 in a year you get yourself to a urologist. She even recommended a urology practice (and told me which were the good guys and which the "old farts" to avoid!) and told me that the next UTI I should call them. I did and the rest, as they say, is history.

As you have guessed, no UTI. I had a lot of burning and urgency which I had thought was due to the non-existent UTI. The only difference in my case was that I did not, and never have, had blood in my urine.

I really think that the nurse practitioner saved my life, or at a minimum my bladder. I was diagnosed with papillary bladder cancer with some "areas of irritation." A second TURB (biopsy) a few weeks later determined that the area of irritation was CIS...a high grade form of bladder cancer. I had BCG treatments and now, almost 8 years out, and healthy and bladder cancer-free.

The CT-urogram should tell the urologist if there is a suspicious area in the bladder or, less likely, in the kidney. If there is in the bladder, she will probably want to do a TURB (transurethral resection of the bladder) where, under general anesthesia usually as an outpatient, she will remove whatever tumor she might see and send samples to a pathologist for analysis. The pathologist's report is the only definitive diagnosis as to whether it is cancer or not, the grade (how fast it is dividing) and whether it is localized or has gone into the lower layers of the bladder.

The take-home of this tale is first, that it will be a while before you know exactly what you might be facing, and, second, that if it IS bladder cancer this is something that can be treated.

Please keep us informed...we are interested in you!! Many of us have been there/done that and would be glad to try to answer any questions you might have.

Good luck!

Sara Anne

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

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5 years 3 months ago #49570 by acherry317

I'm new here and not diagnosed. I went to see a urologist last week because I urinate nearly 20 times a day as opposed to the 4-6 times per day average. As a matter of standard procedure, I gave a urine sample when I arrived and she told me there is blood in my urine. I told her I didn't think I had a UTI and she confirmed that there is not infection present. I have had visible blood in my urine in the past, with clotting. I always thought it was related to the UTIs I'm prone to get. I think I had over 14 UTIs in 2014 alone. She is sending my for a CT urogram this week and no other tests have been ordered at this time.

Question is has anyone else experienced constant UTIs with blood present even if no infection is present? I don't have kidney stones so I don't know what else it could be. I had a hysterectomy a long time ago so it can't be menstrual blood (sorry fellas).

Thanks in advance if you decide to share your story of your initial journey.

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