BMU.....Hey a 2 to 5 hr drive is nothing when it concerns your health. Since you have other options as i did i would recommend also The Cleveland Clinic as its the #2 Urological hospital in the country. Though i had my second TURB at MSK my surgeon had a problem with my choice of an Indiana pouch...after much travel and research i ended up with Dr. Inderbir Gill at the Cleveland Clinic to do my surgery as he does it laproscopically. He works in tandem with Dr. Stephenson who is also terrific
Now the top hospital in Baltimore in Urology is Johns Hopkins and i would recommend DR. Mark Schoenberg
These are all top people in the field of bladder cancer.
Pat, Thanks for the link and for sharing your experience. The motto of going in for the best seems to make perfect sense. Though I am from upstate NY, I work in PA, and could go to not only NYC, but to PHL, Cleveland, Baltimore, Washington, DC or to NJ as well. [The only issue is that all big cities are a 2-5 hour drive away.]
As per my insurance, I do not need a referral either. So, I will look around and see where I can get the earliest appt. After all, this is an issue of life and death as I am slowly beginning to realize.
P.S. By pre-cysto, the Uro meant the X-ray and blood work he ordered to be done a week ahead of the cysto to see if there is anything else we are missing in the kidney or the connections between the kidney and bladder.
Thank you for the informative comment and analysis. Your explanation of the Rheumatologist's comments and the detailed analogy with the present situation did not occur to me, but it makes perfect logical sense.
This is the kind of reality check that I was hoping for because like many others, I am a victim of my own blindspots and it takes someone else to point it out. [Undeniably, there also seems to be a part of us which seems to be in an eternal search for denial]. I am indeed glad that I joined the forum.
P.S. I am still somewhat debating the X-ray with contrast vs. CT scan though I am leaning toward pushing for X-ray with contrast because it seems that one could derive more diagnostic information from it while we are at it.
11 years 4 months ago - 11 years 4 months ago#24005by Patricia
OK...now i'm thinking out loud. I noticed you're in NY..you've got some of the best uro's and surgeons in the country at Memorial Sloan in NYC. I don't know where you are in the state but i went there from Ohio and I'm pretty sure they saved my life. You really don't even want to mess with the probability that it might be cancer.....and its widly known that the best uro's and surgeons are associated with major facilities ..university or cancer centers.
And if you go to your local hospital the first thing the technician is going to ask you is do you have any allergies to dyes....and you're going to say yes...and either she/he will know what to do or not. A CT scan without dye may show a tumor but it will not be defined without the dye. If you should have CIS as i did it does not show up and was only picked up during the Trans Urethral Resection or TURB. I also had a local uro as my brain was not functioning remotely at the time do my TURB....brain cells kicked in and i called MSK and they got me in within 7 days to Dr. Harry Herr..quite reknown. He did a second TURB within 9 days of the first and got all the margins my first uro left in there thus preventing re-seeding and like i said...saving my life. I was still diagnosed as T2 Grade 2 and bladder needed to come out but the interesting thing was when it did come out there wasn't a cancerous cell in it. That i attribute to Dr. Herr. It would have come back as thats what this cancer does...it just seems to want to come back.
Ok worst case scenario there. But my point is....find out what you have from the best and be treated by the best. The entire team is important here from surgeon, to pathologist, and everyone inbetween taking into account all the meds you are taking.
Here's a link if you're interested.....
also Dr. Bochner is excellent
Oh and by the way there are no stupid questions as i haven't the slightest idea what a pre-cysto is? Pat
The TURB cannot cause bladder cancer.
Your rheumatologist is talking about something entirely different when he says he won't treat the test. He means that since he KNOWS your diagnosis, he won't treat your sed rate if you're not symptomatic.
The TURB is not simply a treatment. It is a diagnostic test. While a cysto in the urologist's office could show tumors, then you'd need the TURB for further diagnostic evaluation; however, your urologist can do a much more thorough exam during a TURB than he can during a cystoscopy with the flexible scope. And he can do biopsies, which may be an essential part of your evaluation. Your positive FISH cries out for thorough evaluation.
If your urologist was suggesting BCG or surgery on the basis of the positive FISH, that would be treating a test result. While a TURB can be the initial step in treatment of bladder cancer it is also part of the diagnostic evaluation for cancer.
My advice. Stop hoping that negative UAs mean you don't need the TURB. If you have cancer, the earlier it's diagnosed, the better your prognosis. Proceed with the TURB without delay.
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...