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Major bladder cancer hospital is NOT OPTIONAL!

8 years 8 months ago #31292 by Patricia
Maz...this is an older site but lists top hospitals in the NIH
http://www.canceractive.com/cancer-active-page-link.aspx?n=435&Title=Centres%20of%20Excellence
Apparently if in the UK you want a referral to The Royal Marsden
http://www.royalmarsden.nhs.uk/rmh
The NIH should be able to help you. I just know a recent mandate made in the UK was to refer all bladder cancer patients to major bladder cancer centers due to dismal results. I posted it somewhere here...i'll find it.
Pat

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8 years 8 months ago #31290 by mmc
That's OK maz. No offense taken at all. :) :)

That's why I put the smiley face in my original response.

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 8 months ago #31289 by maz
:So sorry Mike please excuse me, not so good as expressing myself. Me neither, very insensitive of me. Apologies again.

Dx-11/12/09 pTa G2
Mitomycin C x6

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8 years 8 months ago #31288 by mmc
Since things are different in the UK, I think somebody in the UK probably has to take that role. Some places are better than others and some doctors have more experience in specific types of surgeries.

Someone just needs to do the research and share that information. Either that, or folks can post their experiences.

As for "victim", I don't know because I have never been a victim and never will be a victim... :)

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 8 months ago #31287 by maz
:( I think you are all great & very lucky to have this advice for US & Canada, but is there anyone out there that can give the same advice/leads for us UK victims ??

Dx-11/12/09 pTa G2
Mitomycin C x6

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8 years 8 months ago #31282 by kcnorthstar
Mike,
I just came across your post: MAJOR BLADDER CANCER HOSPITAL IS NOT AN OPTION. I must have missed it the other day. Thanks for posting that and trying so hard to drive that point home.
I got a total of 5 opinions before I got my neobladder. I took the time to travel to Mayo in Minnesota and went to several major university hospitals in Chicago. I evetually picked The University of Chicago Hospital and all the time I took making that decision payed off big time. I hope everyone that is newly diagnosed reads your post and takes apropriate action. We have all been stressing that on this site, but I think your posting really conveys the message strongly.

KC

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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