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Help with questions for 2nd opinion

8 years 6 months ago #32189 by Patricia
Hope..first of all you have one of the top Uro/surgeons in the US in Dr. Steinberg and some of the finest pathologists at Uof C.
One of the things you don't want to do is judge his personality. He's in the OR 4 days a week and has 1 day to see new patients. He may or may not have a lot of time to answer questions. At this point your father is having gross hematuria and will be obvious to Dr. Steinberg that he needs a TURB as soon as possible. The specimen the doctor took during a cystoscopy will be of little value and he may just reject it right off. First you make sure your father understands what a transurethral resection is. The only thing you need to really ask him is how many TURBS do you do in a week? How many reconstructions, should that be necessary, in a year? how long is the TURB procedure? Will i need to have a catheter after and for how long? When will pathology be back? May i pick up those reports myself at the hospital? (you can)
Once you determine the path you need to go down here is a link to a page with some pretty good questions...but they're all mute right now.
http://blcwebcafe.org/content/view/101/111/lang,english/
Here's an article by Dr. Steinberg which answers a lot of questions about bladder cancer.
http://emedicine.medscape.com/article/438262-overview
Good Job Hope....by the way Steinberg is listed in the Best Doctors in the US.....
pat

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8 years 6 months ago #32186 by Cynthia
Hope,

I am sorry you have to be here. You cannot learn everything about bladder cancer all at once there are some of us that have been dealing with it for years and are still learning.

You are doing well the second opinion goes a long way in stacking the deck. I flew to Chicago form Massachusetts myself and had my surgery with Dr. Steinberg at UCH. He is on our medical advisory board. And the others you named are respected.

I hear with you are saying about asking the right questions. So I am asking the group to list the questions they wish they had asked their Urologist on the first visit. I have to run now so I will post my list later.

You are doing a great job your father is very lucky to have such a loving daughter.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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8 years 6 months ago #32185 by sara.anne
Your father is so lucky to have you on his side. One of the most difficult things we seem to have on this Forum, when people arrive "newly diagnosed", is getting them to understand the importance of getting to urologist who specializes in bladder cancer. You are way ahead on the learning curve here!! And especially since it appears to be high grade.

I won't give you any more advice...Mike has given you plenty and you seem to be doing fine. I will add my best wishes to you and your father.

Sara Anne

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

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8 years 6 months ago #32184 by mmc
Steinberg is probably the way to go. He specializes more in bladder cancer. Kozlowski is more prostate and metastatic disease. I read this information in previous post from Pat to someone else in the Chicago area.

Steinberg does lots of TURBTS and he does lots of radical cystectomies and diversions. But, you don't need to be asking cystectomy questions at this point.

Hmmm...
What to ask?

-Since I've already been diagnosed with high grade bladder cancer, how soon can you do a TURBT? Does this afternoon work for you???
-Based on the reports, do you think I will be in the hospital overnight or be out a few hours afterward?
-Do you expect I will need to go home with a catheter in based on the size of the tumor?
-Will you be giving me something like pyridium for bladder pain after the procedure?
-What other tests do you think I need now or should we just discuss that after the TURBT?
-What should I know now that I haven't asked you?

He can't tell you much of anything until he knows what he is dealing with. Bring the reports and any xrays and scans on CD. Get the slides from the biopsy also and bring them with you.

Once he has a look, schedules a TURBT, and gets the pathology, he can discuss treatment options. That guide I posted will give you a pretty good indication of the standards of treatment depending stage and grade.

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 6 months ago #32183 by hopeful1
Hello Mike,

Thank you for your response, I really appreciate it.

We live in Chicago. On Tuesday, we're meeting with Dr. Steinberg at UIC.

On Thursday, we are meeting with Dr. Kozlowski at Northwestern.

I'm waiting for Loyola to call back with what openings they may have.

I found these doctors on my own, my father's urologist didn't recommend anyone to us. He told us he had extensive knowledge in this field. When I researched him, he is part of a uro firm and there is only one doctor there that specializes in only radiation treatments for urinary cancers. He wanted to do the TURBT in his clinic down the street. I said absolutely not, this is CANCER and we are going to an oncologist and are going to have this done in a hospital.

The biggest problem I'm having is deciding what to ask. With all of the different treatment options, and staging, and chance of reccurence, etc. it's so much information that I don't know what to ask first. I don't want our consultations with these doctors to be a "waste" I guess. I want to have the most information I can in order to help my father make a good decision on who to choose. I'm already leaning more towards Dr. Steinberg.

Thank you again!

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8 years 6 months ago - 8 years 6 months ago #32180 by mmc
Also, you want a doctor that specializes in bladder cancer, not prostate cancer or some other bladder abnormalities. If you are doing your own checking, check their bios and be sure that they have the correct specialty. Doesn't matter if cousin Mary or Doctor Bob heard that this guy or that guy is a really good urologist.



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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