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TURB Tomorrow ... now what?

8 years 5 months ago #39312 by sjk
Sara Anne,
Tomorrow will be the first TURB, yes the uro postponed the cystoscopy, I was scheduled for, after he saw the CT scan. Keep thinking had a been better prepared for this possibility I may have opted to go elsewhere for the first. But at this point, we'll go with the local guy (he has a fair amount of experience but I never liked Jiffy Lube).
And I agree the skin cancer analogy bothers me.
As soon as the first pathology comes back I'll ask for a referral, If I need one at all, probably need to check with my insurance company for that.
If I can get an appointment with Dr Schoenberg, (his name has come up several times) at Hopkins that's what I'll do.
I'll let you know how the first goes.

Thanks

Steve

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8 years 5 months ago #39310 by Patricia
Steve,
you've done your due dilligence homework. Yes a second opinion and the #1 urology center in the country is Hopkins so it would be hard to find anyone better. My second TURB was done exactly 9 days after the first one which was done locally by a local uro not the least bit experienced with bladder cancer (nor was I)..second opinion went to Memorial Sloan and Dr. Herr. Having a great surgeon makes a huge difference. First sample was not complete enough for pathology. Most repeats are done from 2 to 6 weeks after the first.
If Hopkins is running behind..think about Vanderbilt as a second opinion. They have a boatload of experienced bladder cancer surgeons. For Hopkins Dr. Schoenberg
http://urology.jhu.edu/markschoenberg/index.php
Vanderbilt....Smith, Chang.or take a look through their dept and see who you match up with...just hit their names for a bio
http://www.mc.vanderbilt.edu/root/vumc.php?site=urologicsurgery&doc=24682
pat

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8 years 5 months ago #39309 by sara.anne
Have a few questions for you....Did you have a TURB? Or was the
"scope" a cystoscopy? If you had a TURB you should have access to the pathology report from the tissue samples taken. Or you are having the first TURB tomorrow?

Hopkins would be a great place for a second opinion. And yes, they would probably (should) do a second TURB. It is almost standard protocol to do a second TURB since often things are missed the first time in. For example, my CIS (a more serious diagnosis) wasn't found until the second TURB.

AND, I wouldn't call bladder cancer quite "like skin cancer." While, when found in the early stages, it is quite curable, it has the unfortunate habit of coming back..over, and over, and ....

Whatever is going on, you want to be in the best place for diagnosis and treatment. To get back to the "oil change" analogy, think of yourself as a bright red Ferrari....would you take such a precious car to Jiffy Lube or to a specialist?

Let us know what happens...

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 5 months ago #39306 by sjk
Much to my surprise, there seems to be a "shadow" or a "thickening of my bladder wall" according to a CT scan I had to find what we thought were Kidney stones causing the Hematuria I have had twice since March.
In March they thought it was a prostate infection, guess they were wrong.
Anyway I went back to the Uro to get scoped after the CT. At which time her informed me he would need to go in and do a Retrograde pyelogram. My creatinine levels have risen over the last 4 months or so, so they didn't use the dye with the CT. Should have asked more questions at the time, but I really was still focused on the kidney and the blood in my urine, and not the "shadow". He did say it could be cancer "kinda like skin cancer" cut it out and be done with it.
Well, need less to say I've done some looking around on my own since then, and odds are it's more than cut it out and forget it.
CT was 12 days ago, been a long wait wondering.
In retrospect, wish I had gone to the Uro on the first instance in March.

So, I understand; barely, the importance of the Stage/Type/Grade and it's importance to the overall treatment and prognosis. I have also seen several things regarding the prevalence of understaging and the impact that may have on outcome. I have pretty much decided, regardless of how the TURB and the resulting pathology comes out. I'll get a second opinion.
I guess my biggest concern at this point is, it seems that the quality of tissue obtained by the TURB greatly impacts the resultant quality of the pathology. So, should I as part of the second opinion, expect a second TURB? Also, will it be difficult, Impossible? to get the tissue necessary in a second procedure?
Also, and I think I know the answer to this, I am about 200 miles from Baltimore, with a brother that lives there. Is there a better place for the second opinion, or farther down the line, more extensive surgery, if needed, than Hopkins?

Sorry for the book I just wrote, but I honestly think my wife thinks this is an oil change I'm getting tomorrow. I'll let her think that as long as I can.
Any thoughts or advice would be welcome.

Thanks

Steve

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