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Advice to newly diagnosed

4 years 1 month ago #49350 by OldEngineer
Lillian - Very glad to hear you are tolerating the BCG treatment well - I certainly hope that continues and I also hope to follow in your footsteps!

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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4 years 1 month ago #49346 by LillianG
Old Engineer - that's great news about the second opinion. I also had a second opinion done at Johns Hopkins, and it agreed with my local hospital's pathology (TaHG TCC) report/analysis. I understand your concern about getting 'wounded' by the catheter. I had treatment 4 this morning, and the side effects so far are about the same as treatment 3 was, so this is certainly doable.

Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.

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4 years 1 month ago #49345 by OldEngineer
One other item for everyone's info. I requested a second opinion on my pathology report from doctors at Sloan Kettering, just got it today, and it differed from the pathology report from the hospital at which my TURBT was done. The hospital pathologist had graded the tumor "high grade T1." The Sloan Kettering pathologist graded it "high grade T0" which is obviously better (no invasion of lamina propria). Does not change the course of treatment but certainly makes me feel a bit better psychologically; and it does show the need to multiple opinions on things like this.

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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4 years 1 month ago #49343 by OldEngineer
Thanks very much Lillian - understood. My concern is that the wound can occur during catheter insertion or removal, hence there would be none present before the procedure but one created during the procedure. That is what happens to me during cystoscopy - no bleeding or wound beforehand, but bleeding afterwards. Urologist is very competent - I am sure it is not him - probably just the way I am wired (or plumbed) down there.

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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4 years 1 month ago #49329 by LillianG
Old Engineer, you misunderstood what I was saying. They test my urine prior to injecting the BCG. If there was any blood in the sample, they would postpone the treatment. They will never give a patient BCG if the urine test shows blood. In my case, the blood appeared a few hours AFTER I voided the BCG. My understanding is that it is normal and expected to have a small amount of blood and tissue in the urine after a treatment because the bladder lining is sloughing off.

I have not been given or needed any antibiotics with or after my BCG treatments. I do monitor my temperature, and if it ever goes above 100.5, I will go straight to the ER.

Dx 5/28/15 with 4.2cm x 2.2cm Ta HG Papillary TCC; 2nd TURBT 7/09/15, NED; 6 BCG completed 9/30/15; 3 sets of BCG maintenance completed 1/26/17. Six cystoscopes - all NED. Moving to scopes every 6 months, and no more BCG maintenance.

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4 years 1 month ago #49320 by OldEngineer
Sara Anne - thank you and certainly I concur with you, but the issue is a bit different. There would be no open wound at the time the catheter is inserted; the wound would develop as the catheter is inserted or when it is removed. That is what happened to me on my cystoscopy last week - considerable bleeding when the cystoscope was removed. That is what I am concerned about. But indeed I will review this with the urologist and see what he has to say - and hopefully I will be enlightened in the process. Will report back regardless just for everyone's info.

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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