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1 month 1 week ago #60233 by VTJeff
Thanks Alan and Mike! Also Clyde - your input was timely & helpful. Had my first mitomycin instillation yesterday - brief discomfort as the catheter went through my prostate but otherwise not a big deal. I was very relieved to finally start treatment, and realize many others deal with much worse such as full-body chemo infusions.

No side effects from the mitomycin yet - other than tiredness the first day.

-Jeff

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1 month 2 weeks ago #60218 by Clyde
Hi Jeff,

I just wanted to tell you that I was also extremely apprehensive about a cystoscopy or having a catheter inserted for installation of medicine into my bladder. I've had two cystoscopies and the last couple months and just completed 6 BCG installations and they are not something to look forward to but they really are not that painful. With me they inject some lidocaine which is a little uncomfortable but it only takes about 5 seconds. That numbs you somewhat for the cystocopy or catheter. You feel a little discomfort during the insertion but again it takes about 5 seconds. Once it's beyond the prostate and into the bladder it's not painful, just a little uncomfortable. It sounds worse then it is.

Hoping your treatments go well for you!

Clyde

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1 month 3 weeks ago - 1 month 3 weeks ago #60195 by mikequestions
Hi Jeff,

What a roller coaster ride you've been on!

When my hospital ordered the BCG, they told me they'd schedule my treatment when it came in. It took 6-7 weeks, and I just had my 2nd BCG treatment. They said they never know exactly when they will receive the BCG from their supplier(s), and that they'll only schedule treatments once they know they have it. With this in mind, you may want to push back a little.

It's very common to wait 8 weeks or so for treatment - This gives you enough time to heal before the treatments start.

Edit: I also just gave this advice to "Rosie" in another thread in this topic. Please read that, too.

Happy Thanksgiving! You're in my thoughts.

Mike

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1 month 3 weeks ago - 1 month 3 weeks ago #60191 by Alan
Jeff,

Happy Thanksgiving back at you. I think you have answered your own questions and taken all of the right steps in my eyes. The second opinion certainly was a good move. When the doc said "A Dartmouth pathologist reviewed the initial pathology report and concluded that “although muscularis propria invasion cannot be definitively identified by H/E stains, the growth pattern is worrisome”. it tells me he is being conservative and careful especially in dealing with high grade. With the 2nd review showing no invasion you do have something to lean on especially when it sounds like several docs were reading this. As far as recurrences. They are simply stats. If it is 50/50 ( I have seen some studies quoting that in similar DX) then just presume you will be in the free 50%. We are all different in how our bodies react.

Mitomycin has been done with many and from what I have read is a good alternative to BCG. Some will even tolerate this agent better. As far as the catheter for instillation and cystoscopy. I told myself it will pass in 20-25 seconds and it is more discomfort than pain. Everyone's threshold is different so I am not judging what one feels. The other thing I tell myself is "If this is the worse I will face, so be it....lot's of people have a lot worse....especially dealing with systemic chemo."

The key now is to follow your 3 month checkups after treatents. Keep posting as you go.You will put this in you rear view mirror sooner than you think.

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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1 month 3 weeks ago #60190 by VTJeff
Thanks to all who responded to my prior posts. This dis-ease can certainly be a roller coaster! Here is an update on my ride thus far…

The pathology report from my initial TURBT indicated “high-grade, poorly differentiated urothelial cell carcinoma of the bladder which invades both the lamina propria and musculari”, thus muscle-invasive bladder cancer. CT and bone scans were negative for metastasis. I was referred to the nearest cancer center (Dartmouth Hitchcock) for evaluation/treatment. A Dartmouth pathologist reviewed the initial pathology report and concluded that “although muscularis propria invasion cannot be definitively identified by H/E stains, the growth pattern is worrisome”. The Dartmouth URO explained options and it was decided to conduct another “re-staging” TURBT.

The second TURBT at Dartmouth included resection of the original tumor site, removal of a 1 cm papillary tumor, and additional samples from different quadrants. Pathology report indicated high-grade but no muscle invasion, with CIS. At the tumor board meeting, pathologists recommended looking more closely at the initial pathology report/original TURBT samples/slides which had indicated muscle invasion. This was done and they concluded no muscle invasion. Quite a lesson on the importance/accuracy of the initial pathology report...

Based on the diagnosis of high-grade non-muscle invasive bladder cancer, the Dartmouth URO recommends BCG treatment. However, neither Dartmouth or my local hospital can get BCG so they are recommending the six-week Mitomycin C treatment which I am starting next week at my local hospital.

Recurrence seems fairly likely based on my research on Mitomycin and high-grade/CIS, but I guess this is the standard approach?

Any input on what to expect with the Mitomycin treatments? I’ve yet to have a cytoscopy or catheter installed (without being under general anesthesia) so I’m a bit queasy about this but will have to get over it quickly I guess.

I have found out that no matter how much research one does, or how much information you get from your providers, the actual experience of a procedure/treatment can be quite different. Certainly there is a wide “your mileage may vary” experience for each individual, but it is so helpful to hear the experiences of others on this forum. I may write up my varied experiences with having TURBTs at different facilities (local vs. large hospital), to help folks who are facing their initial TURBT.

Happy Thanksgiving to All!
-Jeff

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3 months 1 week ago #60002 by Alan
VT Jeff,

There is life and good life after a cystectomy. Just from my passion of golf I personally know 3 people that are golfers/friends/acquaintances. One has had the neo bladder, another the pouch (the first two still play an play as well as before) and the other the illeal conduit (although he gave up golf). So there is not much you wll give up except beating this cancer!

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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