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Has Anyone Experienced This...??

7 years 2 months ago #45181 by sara.anne
Sorry to hear about this!! Couple of things I don't quite understand. Did your primary care doc do a culture of the urine when the antibiotic didn't work? Not all antibiotics work on all bugs...and it can be very important to know which bug might be bothering you.

I would have to echo Alan's suggestion that you find a new urologist. I cannot imagine one telling you to wait a month or more if you have a UTI!! Mine even stayed quite late one day just to fit me in and get my treatment started.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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7 years 2 months ago - 7 years 2 months ago #45177 by CatherineH
Hello Josie... Welcome to the forum. I'm sorry you've had such a difficult and scary time. Any irregularity like that automatically puts us into panic mode. My only suggestion is to call your uro's office, explain the trouble you've had, and ask if you can just come in for a cytology test. That only requires a urine sample and you don't even have to see the doctor. They would be doing that in September anyway, so a little early should be reasonable.

I had my primary care doctor do one for me in May since my uro/surgeon put me on a one-year cysto schedule last time which means I don't go back until October. I got a bit nervous waiting 12 months, so had the cytology done to ease my mind. I did have to pay for it myself which was around $100, but it was worth it.

About your question of cancer coming back... I see you had non-invasive, low grade. That is the best-case scenario if one does get bladder cancer. It does, however, have a tendency to return for some people. If that is the case, it can be taken care of with another TURBT and will generally be the same type. Try to take this in stride because it is the nature of BC, but yours is very treatable, even if it comes back.

Please let us know how your next check-up goes also.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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7 years 2 months ago - 7 years 2 months ago #45174 by Alan
I am sorry you have had BC but, you are at caring board that most of us have experienced BC! If you have access to another URO practice (many will take self referrals). I would consider changing for lot of reasons. It would be a fresh set of eyes besides what should be a prioritized appointment. Also, as many on the board you want a practice that does a lot of bladder cancer which might include a good teaching hospital/practice. Hematuria that doesn't go away can mean many other things also. A CT scan to be sure there isn't other urinary involvement such as kidneys is probably in order. At the same time on another thread I had talked about knowing three people that pass blood infrequently with no known cause. With a prior history of BC however, I would want eveything thoroughly checked. The good news as you are aware, this is a treatable disease. There a lot of smarter people on this forum than me and more will chime in. Keep asking questions!

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.

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7 years 2 months ago #45173 by josie
Hi everyone,

I am new to this site, but not to bladder cancer. Two years ago I was diagnosed with bc which was non-invasive and low grade. It was a long journey as I was being treated for a UTI for a little over a year. After so many questions complaints and doctor visits I finally went berserk during an office visit and demanded my doctor refer me to a urologist. As I had suspected all along, I was diagnosed with bladder cancer 5 days later. Had a turbt done and an instillation of mitomycin in July 2011. It took me a while to get back to normal as I experienced painful inflammation for quite a few months. But other than that it was an OK recovery. My cystos every 3 months have been all clear. The last one I had was on May 5, 2013 and dr. said was all clear and she would be doing my next cysto every 4 months now. So my next one will be on September 9th. But in the beginning of June (a month after cysto) I saw a little blood on toilet paper. Since I was seeing my GP in a few days I mentioned it to her and she had me take a urine test at the office and sent it for urinalysis. She said urine test showed an infection and blood in my urine so she prescribed antibiotics and infection did not clear up. She prescribed antibiotics again and infection did not clear up once again. So she gave me a referral to my urologist (by now it is mid-July). I call my uro and am told she doesn't have any appts. available before Sept. 9th so I'll have to wait and see her then. Oh yeah, she said she was sorry about that. So now it is August 10th and I get to wait another 29 days before I get to see the doctor. I have been a basket case wondering if the cancer has returned. I am so scared!!

So that's my question. Is it possible that the cancer has returned even though my cysto in May was an all-clear and I've had an infection since June that won't clear up? Doesn't it take a while for cancer to grow back. Could it have not been there in May and then came back in June?

I'm sorry to ramble, but I am so nervous and I can't get any answers from the doctor.

I hope I will receive some comments.

Thank you for listening.

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