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How to go about getting an expert opinion?

13 years 4 months ago #6836 by wendy


That, my dear, is the 64,000$ question. You can have a recurrence a couple of years later and that can be considered a new tumor and not a recurrence of the original cancer, thus BCG can be tried again (or another immunotherapy or intravesical chemo); some would do another round of six.

Herr from MSK says if there is tumor at 3 months follow up, it failed, while Lamm others say to wait 6 months for the full effect of BCG to do its job, but if there is tumor at 6 months it's time to move on. The "art" of oncology is called into play and in my opinion we should all trust our gut feelings too.

Hope that helps.

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13 years 4 months ago #6835 by joeburg55
Hi, my Name is Joe, I am 52 years old and just recently, had the bladder sparing proceedure. My original Tumor was Grade3 T2N0M, As far as an exspert oppinion, that is left up to the area you live, what hospitals you fathers insurance allows him to go threw, and who on staff has the exsperence . I found That most Ono's are good, radioligist and uro,s, work together well, You need to get more info from your Mom, so that all who frequent this web site can at lest try and help, Good Luck


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13 years 4 months ago #6832 by Rosemary

Thanks for your response. It is always so nice to get your input.

My question, though, which has never been fully answered is this....


Thanks again for the input, Wendy.

Your friend,

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

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13 years 4 months ago #6828 by wendy

PS....I hope that the Doctor was not the one who said that the Radical Cystectomy was 100% guaranteed. The odds are just not like that with a cancer diagnosis. At least not by what I have read on this board.Anyway, I hope that someone who knows the numbers will enlighten us on this matter.Your friend,Rosemary

Dear Rosemary,

Most of us hate statistics, I know I do and seeing my own almost killed me on the spot, 7 yrs ago.

There was a good long term retrospective study from USC in '01. The findings were basically, the sooner the better. The long term surival for post cystectomy by stage was indeed close to 100% for path specimens with the least amount of tumor,
http://blcwebcafe.org/cystectomy.asp#cystectomystats When a path specimen is staged a P0, it means the TUR eradicated the cancer pre-op. And that's the highest survival group.

Statistics differ depending where you look. Thus the wide ranges we often see in articles. The above study was all from the same institution. 2006 European cystectomy stats reported a rather large drop in survival if a tumor invades from a T2a to a T2b, underlining the risk of understaging.

First line therapy for T1G3 bladder cancer is a hot topic with experts in disagreement of what is best. Many times it's the doctor's preference, other times it's the patient's. Dan's story and his search for a doctor willing to perform cystectomy for his T1,G3 tumor+CIS was an eye opener to me! and maybe more the exception than the rule.

It really boils down to patient preference. For every person that wishes to try bladder sparing, there is a person who wishes the cancer out. There are stats in favor of both approaches, BCG's safety and effectiveness for T1 tumors and CIS "vs." better survival for earlier cystectomies.

I think before BCG panned out to be so effective cystectomy was the first line treatment for T1 tumors, while these days it's more like "if BCG fails, get it out", along with data saying that progression while on BCG gives a worse long term prognosis. And not every expert agrees on the subject (of course...)and due to the lack of randomized phase III trials, there is room for speculation.

Take care,

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13 years 4 months ago #6780 by Patricia
Renee...see my private message......Pat

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13 years 4 months ago #6767 by helpdad
Bear with me, I'm still learning the terminology and I'm at a disadvantage because I wasn't at the appt with the urologist so I have to rely on what information my parents relay to me (which I'm finding is not always accurate or complete). CIS is carcinoma in situ, correct. That would be when the tumor doesn't stick up from the bladder wall but is instead flat and can be in more than one place in the bladder lining, correct? That sounds like what the doctor described to my parents. He said there wasn't a tumor sticking up that he could just take off, it was spread out and flat and "jelly-like" and kind of all over. If CIS is present would that indicate better odds with RC? He did say over and over that it's very aggressive but luckily had not invaded the muscle layer yet.
I'm not sure if the first doctor told them RC would be a 100% guarantee or if that was just what my parents inferred from the conversation.

I believe he's seeing Dr. Garnett at Northwestern. Will tell my sister to make sure they bring all those things you suggested to the appt on the 30th. I know they have the CT scans and requested the path report. Not sure about the slides, but I'll find out. If he goes the reconstruction route is one type of bladder better than another, or is it case dependent? Their first doctor kind of scared them about reconstruction so right now I think Dad is leaning toward an ostomy bag but that might change after he talks to the doctor at NW. Really wish I could go to his appt with him on the 30th as well, but I'm having a baby on the 26th (via c-section) and will barely be out of the hospital by then.

Thanks for all your help again! I'll post when I have some more info. I'm sure I'll have a ton more questions too!


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