First cysto - post TURBT

4 years 5 months ago - 4 years 5 months ago #58646 by Alan
Replied by Alan on topic First cysto - post TURBT
The practice of going home after instillation is normal. As far as septic tanks etc. I haven't run across that before but, it would be a concern if your wife uses some of the septic for fertilizer. Also, I was told to bleach/chlorox the toilet basin for up to 6 hours after urinating out the BCG. Some people become almost too concerned the other way also. When I mentioned this to my URO after he gave me those instructions he said IF this agent was that bad or dangerous he would not let his staff handle if. So, the word is use caution doing logical practices like washing hands etc.

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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4 years 5 months ago - 4 years 5 months ago #58645 by Knifedealer
Replied by Knifedealer on topic First cysto - post TURBT
Just received pathology report associated with biopsy to remove "several tan-pink to white irregular slightly friable fragments of tissue ranging from 0.1 - 0.3 cm." This tissue was observed in September, during my third follow-up (9+ months) cystoscopy after my first TURBT in November, 2018. At that time the tissue was determined to be non-invasive, low grade. Unfortunately, this time the pathologist determined the tumor to be of high grade. Report included the comment: "carcinoma shows borderline changes of high grade, including focal disorder hyperchromasia and increased mitotic activity." Fortunately no lamina propria invasion was observed and the muscularis propria that was examined was negative.

So my risk level increases a notch and I'm disappointed. Induction phase of BCG starts Tuesday before Thanksgiving with last dose on the last day of 2019.

My urologist said the BCG will be instilled at his office and I go home immediately after, holding it for as long as I can up to 2 hours. I was surprised to hear that I wouldn't remain in the office until "discharge." Is this practice unusual? Finally, my wife is somewhat apprehensive about BCG eventually ending up in our septic tank. Are her concerns valid? As a cancer survivor herself, she attempts to grow/raise/harvest as much food as possible herself (eggs, venison, vegetables, goat milk at times) and buy organic whenever possible. She almost divorced me when she learned I used Roundup in a ditch that runs along the road in front of our hobby farm. :laugh:

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4 years 7 months ago #58284 by Alan
Replied by Alan on topic First cysto - post TURBT
It certainly sounds like it was a TURB. Those "peek and pokes" cut and burn any thing that can be seen and specimens are sent to pathology. As usual, you won't know much until the path is reported. Yes, if it reads as high grade BCG is probably the agent of choice.

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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4 years 7 months ago - 4 years 7 months ago #58282 by Knifedealer
Replied by Knifedealer on topic First cysto - post TURBT
UPDATE (new information in bold text):

On 11/15/18 I had 2 low grade papillary urothelial carcinomas (negative for lamina propria and muscularis propria invasion) removed. Surgery included an instillation of MMC. Both tumors were 1 CM or less. This was caught early. I was asymptomatic for bladder cancer. The cancer was found only incidentally during a cystoscopy that was conducted to observe/gauge prostatic enlargement.

On 3/4/19 & 6/4/19 post-TURB cystoscopys were normal except for a small patch that appeared inflamed. My urologist said it could be irritation from the mitomycin instillation or could be the precursor for a new tumor(s).

On 9/6/19 during my third post TURB scope we found what almost certainly looked like (can't be sure until after pathology exam) a "very very superficial" recurrence. Doctor said the area in question appeared to be less than 1 CM and chances are its the same "type of pathology" as what was removed initially (see 11/15 above). I await a call to schedule the biopsy and will update once the pathology report from that procedure is received.

EDIT: biopsy scheduled for 10/24/19.

While the doctor referred to the upcoming procedure as a "biopsy," couldn't this also be characterized as a TURB? If not, what's is different? I assume all of the questionable tissue and some tissue that underlies the atypical tissue will be excised, just as before. I guess my question is: isn't a TURB simply a biopsy, albeit confined to a biopsy of bladder tissue?

A positive thing to note: each cystoscopy seems to be less painful that the last. While the first found me a writhing and whining mess, the most recent could only be described as somewhat uncomfortable. Admittedly 5 mg of diazepam taken prior to the last 2 procedures allowed me to relax and made for easier insertion of the flexible shaft.

Finally, it looks as if my bladder now becomes a candidate for some sort of therapeutic agent, administered intravesically: either BCG or gemcitabine. Admittedly I'm feeling a bit sorry for myself.

Until next time ... My Best to All.

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5 years 1 month ago #56993 by Alan
Replied by Alan on topic First cysto - post TURBT
Thanks for the updates! It helps everyone. I would guess the "napalm" is the irritant! As always just keep the followups.

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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5 years 1 month ago - 5 years 1 month ago #56992 by Knifedealer
First cysto - post TURBT was created by Knifedealer
Just checking back, in part because I said I would, in part because this forum is the best chronicle I have to track my process, and in part maybe my experience may help others.

I had my first post-TURB cystoscopy today, Monday, March 4, 2019. In November 2018 a TURB was performed to remove 2 small (1 CM or smaller) low grade papillary urothelial carcinomas that were both negative for lamina propria and muscularis propria invasion. When I received the pathology report, I presumed I would be obsessed with my condition for the foreseeable future. This has not been the case. In fact, there are times when I forget entirely that I am being treated for cancer. So, at least until now, cancer hasn't ruled my every waking moment.

I understand that for some, a cystoscopy is only mildly annoying while others find it agonizingly painful. My first cystoscopy (when the tumors were found) was more of the latter. I'm happy to report that today's procedure was significantly less painful and clinically mostly unremarkable. While no evidence of tumor recurrence was noted, my urologist did find an area that appeared inflamed and the area was clearly more vascularized than the rest of the interior bladder wall. He said it could be irritation from the mitomycin instillation or could be the precursor for a new tumor(s) as tumors need a blood supply. Since the mitomycin caused significant burning and pain for a week or 2 after the TURB, I'm sure (wink, wink) the suspect area is "just" irritation caused by the napalm ... err ... I mean mitomycin.

So I'm going to continue living life in a very big way until June, when I get to see my urologist again for another cystoscopy.

Thanks for your support and best of luck to all.

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