Side effects from single MMC installation during TURBT?

15 years 9 months ago #18482 by DIB
Would you mind sending me off line the name of the doc at MSK you used? I may head down there for another opinion.

Thanks,
David

Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.

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15 years 9 months ago #18462 by Patricia
hmmmm..maybe time to get a surgeon who can get it all?...second opinion time?
All i know is my first turb done locally and then i went to one of the top in the field at MSK and his remark was "I got what your local surgeon missed."...I do believe he saved my life. Pat

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15 years 9 months ago #18459 by Rosemary
Dear David,

Your experience, though similar in nature, is so different from mine emotionally.
My Uro made CERTAIN that I understood that what he found on 2nd TURB was tumor left over from the first TURB.

Evidently, my Uro had a rough go of it during my first TURB. The tumor was much larger than he expected, there was an extra one in there too. Also, my leg kept jumping (not good when he has a scalpel in his hand) and then, too, his cauterizing machine broke in the middle of his cauterization and he had to find another machine to use.

Anyway, I very much appreciated his honesty with me. It helped me through a really difficult time!! I was truly blessed with that one.

(Then, 3 months later, he moved away.)

Hang in there. I'm hanging with you.

Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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15 years 9 months ago #18456 by DIB
Rosemary:

It was 4 weeks exactly from TURB#1 to TURB#2. And thank you so much for the info about what your doc told you: that it is difficult to scrape it all out and finding more on second TURB is not unexpected. Another reason to be ticked at my doc - he could have told me that without my having to have thought of the question.

Finally a clarification in response to a couple of people who emailed me offline:
The cancer found in my bladder at TURB#2 was not "new" cancer that grew in only the four weeks between TURBs. The doc was emphatic about that: that cancer cannot grow that fast, regardless of its being called "aggressive". It was there at the time of the first TURB but the doc did not get it all at TURB#1 (and maybe not even at TURB#2). Friends who are docs have told me most surgeons are known for their cockiness/arrogance re: "I got it all". Part of the mental makeup that some of them need to be good surgeons. But IMO better surgeons don't need that personality trait.

Be well,
David

Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.

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15 years 9 months ago #18424 by Rosemary
David,

How long has it been since the first TURB? I don't know if you remember but I had to have a 2nd TURB for residual tumor and the Doctor found plenty of tumor left over from the first one. He expected it. He said it was very hard to get it all.

I am T1 G3 with no recurrances. Mitomycin x2 and 12 BCG's.

The outcome is yet to be known, but so far, I am 2 1/2 years out, Bladder Cancer Free...

Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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15 years 9 months ago #18411 by slabman
WOW! Sorry about the news, David. That IS a bummer! :( Let's hope the MMC zapped anything remaining in there. But it only goes to show you those famous words "I got it all" don't really mean anything. That is why the follow ups are so important.

I'm having my initial 90 day look-see next Monday and now, after reading of your results, am becoming very apprehensive about the outcome.

Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009

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