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After Having the tumor removed

9 years 3 months ago - 9 years 3 months ago #32288 by mmc
Dpoe,

I was just reading back from the beginning of this thread. Pat already told you what doctors to see at Johns Hopkins and at Cleveland Clinic.

Now I am confused by your question....

How can I see if Pittsburgh PA has a good bladder cancer doctor?


If you are looking for a top doctor for any local follow up treatment that you may need after going to Cleveland Clinic, ask the doctor at Cleveland Clinic about that when you see him. They probably know of some good urologists (one's who know that all tumors are not cancer, and realize that a ping ball size tumor is actually pretty darn big, and who share pathology reports with their patients) that they can refer you to.

DO NOT skip going to Cleveland Clinic and just try to go to another local urologist. Well, I suppose you could. It's your life and all. I'm just trying to make sure you do what is needed so you have more of it. :) :) :) That's a good thing!


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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9 years 3 months ago - 9 years 3 months ago #32287 by mmc
dpoe,

Pat will tell you. The best hospitals in the country are within a few hours of you.

TURBT: TransUrethral Resection of Bladder Tumor.
That means they go through your urethra (transurethral) and cut out (resection) the tumor in your bladder.

Not being a smart Alec but you can always Google terms you don't know also. Link to Google: TURBT

The 3rd or 4th entry even has a youtube video of the procedure.

Top hospitals for bladder cancer:

Link to US News and World Report Hospital Ranking

#1 Johns Hopkins (197 miles from Pittsburg)
#2 Cleveland Clinic (110 miles from Pittsburg)

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...
The topic has been locked.
9 years 3 months ago #32286 by dpoe
How can I see if Pittsburgh PA has a good bladder cancer doctor? Also please explain what the "turb" means.
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9 years 3 months ago #32277 by Alan
"If they didn't get it all you want to know NOW. If they did get it all then you want confirmation of that."

I won't belabor Mike's comment much but, most of us will have a 2nd TURB per your Doctor if he is doing his job. I didn't understand it initially either. Mike's comment succintly put it better than most.

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.
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9 years 3 months ago #32276 by mmc
I've been dealing with bladder cancer since 2006.
Originally, mine was superficial. It was CIS. Information about CIS is at that same link I gave you in the last post I did about staging and grading.

I was treated by my local urologist and then we went into the wait and see mode.

It came back two years later. I had blood in my urine. I went back to him, he couldn't find it. We had been doing a cysto every three months but it was never seen, even the day after I had new blood in my urine. It showed up in the cytology but he couldn't see it when he did the cystoscope.

I went to University of Colorado Hospital and to MD Anderson to follow up. UCH did a cysto and found it right away and did another TURB. It came back invasive T2 and I needed to get my bladder out.

I'm not trying to confuse you. I'm just trying to get you to go to a top cancer center to have things confirmed. A "scraping" is not the same as a TURB. Get your pathology report, get your slides (from the pathology), get all your records, and get yourself to a top bladder cancer hospital.

Then you will either have peace of mind that your local uro was right on the money OR you will know that you should not be in wait and see mode and you will get things taken care of at the best place you can. What you will not have is an underdiagnosed situation that you don't know about until later. That sounds like a good thing if you ask me. If they didn't get it all you want to know NOW. If they did get it all then you want confirmation of that.

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...
The topic has been locked.
9 years 3 months ago #32275 by dpoe
Mike,

How long have you been dealing with bladder cancer? What stage is or was yours. Are you saying everyone needs another turb (is that the procedure I had done with the scrapping) after 6 weeks? He told me it was only on the upper layer, it did not go down into the muscle. I am so confused and getting nervous all over again.
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