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10 months 2 weeks ago #54652 by sara.anne
So sorry to hear about your issues, but am really glad that you are going to a center that understands bladder cancer!!
As you have realized, after your first TURB if the "jury was still out" a second TURB should have been scheduled immediately. It is not uncommon that the first look/biopsies indicate that a closer exam needs to be done.

I do wish that more people would seek second opinions from qualified specialists when the first look just doesn't seem right. With bladder cancer it is so important that the urologist has experience with this beast.

You are in good hands now; even if BCG is not indicated, there is a lot that can be done. I know that you are worried about your wife's care, but your most important job right now is to get well for her...and for yourself.

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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10 months 2 weeks ago #54651 by owneee61
Hello All,
Went to a Urology Clinic to check out blood in my urine in the beginning of December. Cystoscopy showed quite a few tumors. On Dec 12 I had my first Turps, incomplete as the surgeon did not have enough time to "scrape" all of the tumors out. He said they did not appear to be muscle invasive, but the "jury is still out" on that verdict. CT scan of Pelvic/Abdomen and another of lungs are clear. I go Monday coming, not back to the clinic, but to a teaching hospital (VCU in Richmond, Va.) for the 2nd Turps.

Thus my main message......should have gone to VCU, or Johns Hopkins first; right after being diagnosed by the first doctor. I did not receive much information at the clinic. I was operated on in a surgical center and sent home with very little information in a hurried manner. Questions which arose did not get much attention. Finally I wound up in renal failure New Years Day. To this point the experience at VCU is much better: questions answered, a full team available at surgery and after and bountiful information about the surgery ahead of time.

Hoping non-invasive diagnosis prevails and that BCG auto-immune procedures are feasible. Glad to have found this site. I am and have been caregiver for my wife, diagnosed with a rare dementia called PCA in 2010. She is in Respite now while I begin my treatment. Hard to accept all of this. Hoping for the strength and grace to do this.

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