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Superficial BC vs. Metastatic BC

12 years 11 months ago #6076 by pweization
Rosemary,
That is a great link. Thanks for that.
It's crazy that so many people can have so many different opinions and expeiences. That article says BCG causes remission in 70% of Cis cases. That's the best I've heard.

I like those odds.
-Vin

34 yr old male
diagnosed 10/13/06
T1G3 CIS

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12 years 11 months ago #6073 by Patricia
Warren...when i took my slides into the infamous Dr. Herr at Memorial Sloan...he just threw them out....not definitive enough. He insisted on doing his own TURB. Glad he did. He went in and got the margins my local missed and my path reports came up a little different. However it was aggressive into the muscle .... just one tiny little tumor...ONE...very nasty little guy.
I'll be curious as to what your new uro has to say.........Pat

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12 years 11 months ago #6070 by wsilberstein
Boy, I've learned a lot reading the posts in this section! Checked out the article you've mentioned. I was never told my staging, but based on the lack of invasion of the lamina propria, conclude it was Ta. Maybe grading has changed since I had my cancer, but my biopsy reads Grade 3 out of 4, high grade. There was only 1 focus of CIS, and review of the slides at Harvard didn't find any CIS, but that could be sampling error. I never knew the size of the tumors, but I had 4 of them. According to what I've read, it sounds like I was at serious risk, but here I am 6½ years later dealing with the complications of treatment and never having had a recurrence. Guess I should be happy to have a urethral stricture. could have been a lot worse.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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13 years 1 month ago #5052 by Patricia
Wendy...maybe i was a trial patient at that time...who knows?  Probably depends on the doctor you see there.  
 As you know i ended up at The Cleveland Clinic to have my surgery done laproscopically........and i had an opportunity to see the room, and equipment and many large screens they use.....its amazing.  They can magnify something so much larger than the human eye can see and have access to so many more nodes than conventional surgery.  At the time my surgeon was the only one in the world doing it laproscopically...he's world recognized as a whiz in this kind of surgery and is head of the transplant division.  He's taught his procedure all over the world.  I really think this is the surgery of the future.   Pat

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13 years 1 month ago #5040 by wendy
Kim, Pat, I'm surprised to hear they use the blue light cysto at Sloan, when my sister went for her follow up there not long ago her doctor told her they didn't use it, not enough proof it's better, he said, and we were a bit P.O'ed over that attitude. Maybe he just feels her case doesn't warrant it, since she's low risk, but still.

Rosemary, after reading your post about your diagnosis it's does sound confusing. I sympathise with the second thoughts you're having, especially considering the side effects and they way they bit you. I wish there was some way to be sure about the actual, original dx, but it looks like it's too late for that. At least now you have no evidence of cancer. But yeah, it would be awful to think you had BCG for nothing.

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13 years 1 month ago #5034 by klau1973
Well it's clear that you've done your research. I am just so grateful that my mom and I can benefit from your hard work. You have been such a fount of reliable information.

Kim

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