Not sure if I have it

15 years 9 months ago #17512 by Jill
Replied by Jill on topic Not sure if I have it
I haven't been to MSK--my appointment tomorrow is with Willamette Urology, which is a clinic in Salem, Oregon. I've also been referred to Dr. Daneshmand at OHSU, which is a teaching hospital about an hour north of here. I don't know who my doctor here at Willamette Urology, but will find out tomorrow. Are you located closeby by any chance?

Jill

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15 years 9 months ago #17511 by grampadonut
Replied by grampadonut on topic Not sure if I have it
jill..where do you live that you went to MSK
also(if i may ask) who is your doc ??

grampadonut
dx t2-g3
05/07/08

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15 years 9 months ago #17510 by Jill
Replied by Jill on topic Not sure if I have it
Thank you--I definitely will.

I've printed all the information in the Getting Familiar with the Territory section-terms, etc, and we'll hopefully be armed and ready.

Jill

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15 years 9 months ago #17509 by Patricia
Replied by Patricia on topic Not sure if I have it
OOPs ..sorry didn't mean to throw new terms at you. Well don't worry about them until you have a definitive answer as to whats in there. The TURB is no big deal..at least it wasn't for me...you're out for about 20mins or so and they get a sample of the tumor/tumors including a bit of the muscle and send it off to pathology for stage and grade which takes about 5 to 7 days to come back. I've found just about every uro has a different protocol on whether to leave a catheter in or not...my surgeon at MSK took it out right away as there was no blood in the urine. My local surgeon wanted it in 3 days.....i lasted about 24 hours and took it out..it drove me nuts! You are so close to a great center and great doctor...you are very lucky. Let us know....Pat

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15 years 9 months ago #17506 by Jill
Replied by Jill on topic Not sure if I have it
When I read your reply, I looked up CIS (which I thought sounded good until I read what it is) and TURB. Personally, I'd just as soon skip both of them! ;D

I appreciate your thoughts on OHSU--I will definitely keep on them to get an appointment. Thank God I found you guys and you replied--I wouldn't have thought of getting a second opinion, much less one up there. I've had a few hospitalizations, (hysterectomy, back surgery and bunion surgery), but never got a second opinion and probably wouldn't have if I hadn't stopped by here.

Will let you know how it turns out.


Jill

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15 years 9 months ago #17505 by Patricia
Replied by Patricia on topic Not sure if I have it
Well lets hope he does the cystoscopy and just not order a bunch of blood tests..that will at least tell you if something is in there (unless its CIS and not detectable by the human eye)..but will not tell you the stage and grade of the tumor. You will then have to have a TURB scheduled and personally i would want that done at the major med center for many reasons. He may want to order a CT scan or IVP.....but i'd keep on bugging OHSU if it were me to get in. And even if they want to do a second cystoscopy really with an experienced uro and especially females it should NOT be painful at all. I was expecting the worse and felt nothing.
Pat

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