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The first 4 months part 1

12 years 10 months ago #7528 by Yosarian
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!”


What did “looks good” mean when you scoped me?..

Your suggestions to other questions ? T

Thanks again ....Yosarian
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12 years 10 months ago #7526 by Rosemary
What upsets me about this scenario, is that Dr. Herr's staff seem to be snickering at a very intelligent question by a paying customer. How do they get away with it?


Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
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12 years 10 months ago #7524 by Yosarian

Thank you all for your responses....

The more I think about it the more disappointed and pissed I get....If Wendy is correct (and I have no reason to think she isn’t) they certainly misled me into thinking they were using a “Blue Light” when he flipped the switch. Maybe that’s why they all disappeared so soon so I wouldn’t hear them laughing! I can hear them now “Hey let’s tell the next guy it’s a ah ah “BUD LITE” hahahaha!

I would have been more assertive with Dr. Herr and the staff but it’s difficult when the last time he/ they are actually in your physical presence you still have your legs in the air and your butt hanging over the edge of the table...and by the time you resume some morsel of dignity the room is deserted!

I am not sure why they seem soo defensive there...they certainly have a great reputation...perhaps it’s just “institutional arrogance” or fear of lawsuits .....and of course they know they have you at their mercy..not vice versa.......It’s too bad MSK and other elites can’t see themselves through patients fearful eyes....My anger and disappointment tell me one thing but the fact that this guy may some day hold my life and /or my way of living certainly gives me pause

ANYWAY... The real question I had for Dr. Herr and the board that I was going to ask (and am asking) is

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 two...Why do Dr. Lamm’s studies seem to have such different results?

Any help would be appreciated! Thanks

P.S This seems like another Catch 22!

P.P.S. In trying to find out about any of Herr’s recent studies I found this unrelated but interesting one!

Age and outcome of superficial bladder cancer treated with bacille Calmette-Guérin therapy.
Herr HW.
Department of Urology, Memorial Sloan-Kettering Cancer Center, New York, New York 10021, USA.
OBJECTIVES: To determine the influence of age on the outcomes of high-risk superficial bladder cancer treated with intravesical bacille Calmette-Guérin (BCG) therapy. METHODS: A total of 805 patients with multiple or recurrent high-grade Ta, T1, and/or carcinoma in situ bladder cancer received BCG therapy. The endpoints were the initial response to BCG and cancer-free survival correlated with age among patients followed up for a minimum of 2 to 5 years. RESULTS: No difference was observed in the first response to BCG or cancer-free survival at 2 years among patients less than 50, 50 to 59, 60 to 69, 70 to 79, or 80 years or older. After 5 years, 27% of patients older than 70 years were cancer free compared with 37% younger than 70 years (P = 0.005). CONCLUSIONS: The results of our study have shown that aging has a measurable, but small, impact on the overall outcomes of high-risk superficial bladder cancer.
PMID: 17656210 [PubMed - in process]
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12 years 10 months ago #7518 by wendy

MY question for you ...PLEASE HELP...Isn’t BCG maintenance recommended by most for me now? I had the two TURS, Mitomycin C after the first then my 6 week BCG regimen after the second TUR and then 6 weeks off until the Dr. Herr visit yesterday.
So what is recommended and what would you do?

Yes, many doctors would say you qualify for maintenance with TI,G3 bladder cancer.If you were my sister I would find someone closer to home for a second opinion on this question, one with respect for patient preferences (and valid questions).

Still pissed,
wendy >:(
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12 years 10 months ago #7517 by wendy

Rosemary....there is no evidence of recurrence..the mitomycin and BCG did what it was supposed to do. There's no reason to continue the regimen with a clean scope.
And Harry...well he's a piece of work but he's good!!!

Pat, maintenance isn't reserved for recurs, but used to prevent them. T1G3 tumors are high risk and only maintenance has been shown to prevent progression, not a round of 6.

Europe saves maintenance for CIS most of the time, but the USA is more aggressive with it. I think Sloan is offering a sub-optimal BCG schedule, as well as being inflexible about patient preferences, but hey...who am I but some big mouth on the internet :-X
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12 years 10 months ago #7516 by wendy

and the next thing I know the nurse is telling him I asked about the “Blue Light” as he began to insert the scope. At that time I began to watch the monitor in deep fear I (or more likely Dr.Herr ) would see the beginnings of a new tumor. He then looked around in my bladder for about 20 seconds and said it really looks more green than blue and flipped a switch and the screen turned a greenish hue for 2 or 3 seconds and then switched back to white? Light.

This makes me angry. The blue light cystoscopy procedure won't work unless the fluourescent dye is inserted into the bladder and left for an hour before the cysto. The color is purply-fluourescent, not green at all. Dr. Herr was being facetious, You are requesting a tool that exists, that is being studied. I suppose they're using it in a clinical trial like the rest of the USA but still, you should be taken seriously with this request and not fooled around with.

Dr. Herr is an expert surgeon, obviously not a fan of BCG maintenance or Dr. Lamm's research.

I have been to Sloan with my sister, sat through her cysto, and was not impressed with the 30 second scope she got, only one ureter was visualized. Her doctor is not Herr (for the record). He told her they do not use Hexvix, but it's not true, he actually lied to her. Probably because she's Ta,G1 and clean for years and not high risk, like the blue light is used for. But so what, he lied.

I don't like the attitude of these nurses towards you either. As if it's some kind of crime to be an informed medical consumer. IT'S YOUR LIFE! And it sounds like some re-education is needed here for the staff, like charm school.

I'm sorry for the way you were treated after all the trouble you took to travel there. Sooner or later Sloan will have to learn to live with the fact we are becoming partners in our care, not helpless children with no voice. Sheesh.
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