Has Anyone Experienced This...??

7 years 10 months ago #45173 by josie
Has Anyone Experienced This...?? was created 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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7 years 10 months ago - 7 years 10 months ago #45174 by Alan
Replied by Alan on topic Has Anyone Experienced This...??
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 10 months ago - 7 years 10 months ago #45177 by CatherineH
Replied by CatherineH on topic Has Anyone Experienced This...??
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 10 months ago #45181 by sara.anne
Replied by sara.anne on topic Has Anyone Experienced This...??
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
Forum Moderator

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7 years 10 months ago #45185 by josie
Replied by josie on topic Has Anyone Experienced This...??
Yes, she did do a culture 2X and put me on the same meds twice. When I questioned her the second time, she said the strain of bacteria I have responds best to that particular antibiotic (nitrofur-macr 100mg). Then how come it didn't work?? She responds, perhaps I needed to take it for a longer period of time. When that didn't work she referred me to my uro. Called urologist this morning and I just got back from having a urinalysis done at a local diagnostics center. Found out my dr. takes the summer off to be with her children hence, the Sept. cystoscopy appointment. I will be looking for a new doctor (ASAP). This will be my 3rd attempt at trying to find decent care. Unfortunately, with my Insurance I don't have too many choices. It does not cover any Cancer treatment centers, so will have to wait for next year to change my insurance coverage. (My job only allows a change of coverage once a year and I missed the cutoff). Hopefully, I will find a competent doctor in the meantime.

Because this is how my cancer started the first time (with recurrent infections that would not go away) it makes me very, very scared.

Thanks for responding. It feels good to get things off your chest with people who understand what you are feeling. My family is compassionate and worry about me, but I really don't think you understand something until you go through it yourself. I hope I don't sound harsh.

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7 years 10 months ago #45186 by CatherineH
Replied by CatherineH on topic Has Anyone Experienced This...??
Hello Josie... Of course you don't sound harsh, and you are absolutely right. It is hard for someone who hasn't been where we have been to understand the fear and worry, as much as they may try to be empathetic. I know my own family and friends want to change the subject quickly if I ever mention that I fear my cancer could come back. Those who care about us have a hard time facing that as well and don't know how to channel it but just want to assure us that it's not going to happen. If only it were that easy...

We understand your concern here because many of us live with those same fears lurking around in our heads. I have found that I think about it less and less with time, but then my scheduled checkups bring back the nerves leading up to the appointments.

I do hope your test results from today come back quickly. Please let us know...

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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