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Advice to newly diagnosed

4 years 1 month ago #49312 by sara.anne
A Urologist would NEVER administer BCG if there were an open wound. If he did so your family could live comfortably for years on the malpractice payment!! This is really NOT something to worry about.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 1 month ago #49311 by OldEngineer
Very helpful Lillian, thank you so much for the info (especially the duration of healing), your situation does sound very close to mine albeit tumor size was different - indeed yours was larger. I am very happy they found nothing in the biopsies they did on you - that is wonderful news! For the most recent one where there was some bleeding, did the urologist take any different measures to reduce the likelihood that the BCG would enter your bloodstream? I'm still trying to wrap my head around how it does not get into the bloodstream when there is bleeding since there is an open wound. Perhaps that is just a risk that one has to tolerate. I also understand that you are given antibiotics to use in case an infection does develop; if that happens, I wonder whether that defeats the purpose of the treatment, or whether it may be a "good thing" since if you get a systemic infection, you certainly have a larger immune response? All questions I intend to ask my urologist once I start the BCG. Of course, being the pessimistic engineer that I am, he may find cancer in the muscle during the second TURBT in 11 days, resulting in restaging as T2 and the bladder has to come out. One day at a time...

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 #49310 by LillianG
Old Engineer, I also needed a second/follow-up TURBT to verify that the staging of my cancer was correct (no muscle tissue was in my original biopsies). It took me close to 5 weeks to feel 'healed' from the initial TURBT. My tumor was a bit larger than yours (4.2cm x 2.2cm), so the 'raw' surface area in my bladder was about the size of a quarter. I also received a mytomycin wash with my first TURBT.

For my second/follow-up TURBT, I felt 'healed' about 2-3 weeks after the surgery (probably because there was no evidence of disease found, no mytomycin wash, and all the doctor did was take a few small samples from where the base of my tumor was to biopsy).

I just started my BCG treatments on 8/27. About 30 min before I have each treatment, I take 2 Advils. For treatment 1, I had only a few chills and some fatigue; for treatment 2, I had chills, slight burning when urinating, and some fatigue; for treatment 3, I had chills, slight burning when urinating, frequent urination, blood in urine, fatigue, and a very low-grade fever. For all three treatments, the side effects dissipated within 2-3 days. I'm not sure what to expect for treatments 4, 5, and 6 - but I'll let you know how they go:)

One thing that I think helps with the BCG treatments is to start drinking water about 90 minutes after the instillation of the BCG so that when the 2-hour mark rolls around, I am eliminating diluted BCG, which 'burns' less.

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 #49309 by OldEngineer
Thanks very much PJM - I am 64 and in o.k. health so we are not far apart on age but probably much different in overall health - you sound much better than me.

Understood on the fever; my worry is that that will happen and it will mean that going through BCG for me will become problematic. I want the treatment; just worried that it will not work for me because the bleeding will result in the systemic infection. But I will discuss this with my urologist, hopefully there are things he can do to minimize that risk. Nothing is easy at our age is it....

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 #49306 by pjm
There is a caution with BCG to watch for a high fever, especially with the first installation. I believe a fever indicates that the substance within BCG has not been contained. I do not know the mechanism that generally keeps BCG from the blood stream.
FWIW, I had the series of 6 and felt ill only for 6 hrs on the second treatment. Otherwise all good.For measurement purposes, I'm 67 and in otherwise good health.

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4 years 1 month ago #49293 by OldEngineer
First - thank you to everyone who has given me advice throughout the past month - words cannot express my gratitude!

So I just had my followup cystoscopy this morning (TURBT 8/21 so almost three weeks ago; next TURBT scheduled for 9/25 so two weeks from now). Doctor found a "very tiny" lesion (1mm) and said not to worry about it, he will remove it when he does the next TURBT, during which he will also dig deeper into where the first tumor was to (hopefully) confirm nothing in the muscle there; he did not see anything during the first TURBT and staged the cancer as T1 but of course the second one will tell the story so to speak.

Other than being a bit bummed out that he found another albeit "very tiny" lesion (which I guess could have just been missed during the first procedure - although I thought the mitomycin would have killed any cancer cells in the bladder?), another separate worry came to mind; I have a fair amount of bleeding just from a regular cystoscopy, so I was thinking that when I start the BCG therapy, how do they guard against the bacteria getting into the blood stream? I am sure this is something all of you (who have had BCG) have had to face; I would welcome any thoughts. Again - thank you so much.

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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