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Scared

2 years 6 months ago - 2 years 6 months ago #51307 by Hudsongrl
I am reading along. My husband was diagnosed with supervicial bladder cancer in 2012. The first uro he saw was Trockman. He is not a bladder cancer specialist. He does not use mitomycin after doing a TURBT. We left Trockman after one visit and went to Northwestern. The experience there was like night and day. We see Dr. james Kozlowski, who is a uro oncologist. He is brilliant. He is thorough. He teaches there as well. Dr. kundzu is also excellent as is Dr. Catalona. This is serious stuff and you need the best doc you can find. In my humble opinion, you do not need Mayo. Get yourself to Northwestern. If you already let Trockman do the TURB.t, i would still seek a second opinion from one of the uros at Northwestern.

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2 years 6 months ago #51269 by GKLINE
Jim
I'm sorry that I didn't jump in here earlier. The questions you have been asking are all the same questions we have been asking since we got "the news"
As you probably know by now, the people here are open to anything.
Being scared is absolutely normal and you express everything very well.
As you start your journey to being cancer free, I cannot help but tell you that the people here are all survivors and soon..... you will be a survivor and you can tell the next generation of users that they will get through this as we did.
My advice is;
Get the best Dr you can. Make sure he is a bladder specialist. Make sure he has done a TON of procedures (almost like an assembly line worker, he's seen so much)
Then he will have seen everything and there are no surprises to him.
Judging by your posts here and the reply's you have had here, I would say you are one of the lucky ones that caught it early and your prognosis is good for a full life as a survivor.

George
I have to admit that we ALL have anxiety inside when the Dr says the c word. You are perfectly normal.

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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2 years 6 months ago #51253 by sara.anne
Smaller is of course better. But grade and stage are the most important.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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2 years 6 months ago #51252 by jfmmeyer
Sorry another question, does the size of the mass relevant? Sounds like it doesn't .....

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2 years 6 months ago #51249 by Jack R
Jim,

If it were me - based on what I understand from your posts...

Any doctor that let me get this far WITHOUT having had a CT with and without contrast would be off of my team.

Maybe its the docs, or maybe I don't understand the full story, but I would go with Mayo.

Most important, is that you move ahead with someone and get a fully informed diagnosis which will have to include a TURBT of the 3 cm mass. After that, you may have some real serious decisions to make regarding your future health and treatment.

Best, Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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2 years 6 months ago #51248 by Alan
Mayo, is a given for excellence. Some others will know more about Chicagoland but, you want a center and doctor that specializes in bladder, not as a side line with prostate issues. I looked up my BCBS centers that they recommend (and I do see potential conflicts per possible $$$ contracts): Loyola University Medical Center, Cardinal Bernardin Cancer Center, Maywood. Northwestern Memorial Comprehensive Cancer Center of Northwestern Hospital, Robert H. Lurie, Chicago. University of Chicago Medical Center, Chicago. NorthShore University HealthSystem (formerly Evanston Northwestern Healthcare), Evanston.

I remember other posters speaking highly of Northwestern and Chicago. For my $$$ if your insurance allows I'd stick to those. I'd want the best!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
The following user(s) said Thank You: jfmmeyer

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