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The first 4 months part 1

12 years 3 months ago #7548 by Patricia
Lets find out what the mysterious green light is...i shall make it my quest!!
Also in Fla...Shands Cancer Hospital at U. of Florida ..another good one.
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12 years 3 months ago #7547 by wendy

Opps I forget in my last post to ask also for your opinions on what else I should ask Dr. Herr (or more likely his staff ) if I ever get to speak with them on the phone besides the

“If maintenance BCG would be harmful to me ....I don’t like the pain, cost, inconvenience etc. but would more than gladly pay all these prices for even a chance of improved outcomes!”
and
What did “looks good” mean when you scoped me?..


Hi Yosarian,
I would bet he'd say there is not enough proof, data, level 3 data, randomized phase III trials, to back up the 'maintenance helps' theory.

To the second question, I'm sure he will repeat the statement, "it looked good". I'm also sure he meant it and for that I'm happy for you.

BTW, the blue light being used at Sloan is not Hexvix, but another type, I dont' know what. Or should I say...not being used at Sloan.

Rosie...thanks for the kind words to me, and you are no slouch either, out here in the Trenches yourself all these years.

Best to you both,
Wendy
PS Yos...what about Moffit, the Cleveland Clinic in Lauderdale of U of Miami? Some good doctors down there, too.
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12 years 3 months ago #7546 by New2This
It breaks my heart that they treated you this way. It is your life and you deserve compassion, as does everyone else.
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12 years 3 months ago #7534 by Rosie
Wendy said: but hey...who am I but some big mouth on the internet

No Wendy you are the most knowledgeable and concerned advocate for bladder cancer care than anyone else on internet. I say that after experiencing your concern, research, advice and knowledge for these past 7 years. You show us all your sisterly concern. Maybe a bit of Mother Hen also. LOL Rosie
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12 years 3 months ago #7533 by Rosie
Yosarian,

How comfortable do you feel with “silent” Dr. Herrs having you life in his hands? I don’t think anyone should go for a doctors’ or medical centers reputation at the cost of their own first hand feelings and observations. Your urologist who did a TURB and then Mitomycin did what was in your best interest, I believe. You might considered that there are urologists all over the United States who were at Sloan or MD Anderson or Hopkins or Davis that are now in private practice. The University of Miami has a very extensive and great reputation for bladder cancer research and treamtents. You need not travel to the center where they practiced to get good care if you are convinced only a urologist from one of those centers are best informed.. Rosie
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12 years 3 months ago #7530 by Patricia
Oops sorry.....i guess i've been reading to many of Dr. Herrs papers. He's not a fan. He's into trials with other things. I shall go back under my rock.
Anyway i read the very disturbing article in the June l8th Ny Magazine where they do their annual poll of best doctors in NYC and they included an interview with 5 top docs on "What doctors talk about when you're not there"...One of them on the subject of research said
"Research is a real problem. Doctors just make up the data. They don't report negative side effects, no question about it. I used to write the results on my reports that were negative and nobody printed them. Only if it's positive does it get published in a journal. A doctor I know used to publish papers like nobody's business, and all the doctors who came and left told me he made up data to satisfy NIH grants and pharmaceutical grants. He was and still is very popular."
Well now doesn't that just make you feel special!!!!
And docs don't like you reading anything on the internet....remember the DaVinci incident where the patient blamed his mets on having his surgery by this tecnique because he read about it on the internet......
Whether you're informed or misinformed by something on the internet you certainly should have the right to ask. Personally i would write a letter to the head of the Board of Memorial Sloan...the head of surgery...the head of nursing....Don't look for them to get rid of Dr. Herr anytime soon though.
I remember an incident when i was advocating for my father while he was in the hospital for heart bypass and you name it ..it went wrong...he was opened up 3 times in 3 days...I was questioning the surgeon in charge and he snapped at me " I know what I'm doing!"...And right back at him i said "Well, convince me by answering my questions." I wasn't Miss Popularity on that floor. Pat
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