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8 years 11 months ago #39699 by cece
Iwent there as well for my T2 invasive bladder cancer. It is a great hospital with amazing nurses that dont just give give a round, then leave, they sit with you and talk or just sit patiently threw the throwing up and brutal stuff. Well I was 19 then, I hope the nurses are respectful that way. I thought going to chemotherapy that the nurses would just come in, then leave you... I wish I coul dgo threre now to just say. WOW thanks for the support. Do you feel the same way?

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8 years 11 months ago #39698 by cece
my step dad wen threw t3 I believe, 3 times. He felt the same way since the odds were against him with going under a triple bipass for a heart attack just 1 yr be4. He is doing great now, unfortunately he is still smoking. He will be okay. the nausea of chemo is wayyy intense, just sit and pray ;-) the percentage doesnt make since tome either. take care and staying touch okay? -cece

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9 years 2 days ago #39646 by DianeN
Pat...yes, I conquer with your statement that this is not a surgery for a general surgeon and it is a highly specialized field. The more I read & ask the more I know, but still have lots to learn. If Indianapolis was closer I would have certainly taken him there, but being that both my parents are elderly it's just too far for mom to drive and I live about an hour away. So we need to stay closer to our area. (Dad has macular degeneration and can't drive and mom gets very nervous when she's in unfamiliar territory.)

Thanks for the heads up on the Davinci robotics....another thing to add to my list!

I'll keep everyone posted once I know more and thank you for everything! :)

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9 years 2 days ago #39644 by Patricia
Diane...trust me this is not a surgery for a general surgeon. Its highly specialized. The top guys do 60 to over 100 of these surgerys a year.
Many are done with the DaVinci robotics but you have to make sure that they've done at least 60 of them or they're just practicing. USC/Norris in L.A. does 95% of their cystectomys robotically now but they are not the norm. They have a slew of top nationally ranked uro/surgeons there. Like i said Dr. Koch is fantastic. Indianapolis sometimes goes off the radar but should not as they're the guys who came up with the Indiana pouch and the cure for testicular cancer. They have an incredible team of uro's with Koch and Bihrle at the top of the list. I'm originally from Chicago and Indy was a 4 l/2 hr drive for me from downtown. The University of Michigan has several on their team that are renown........Vanderbilt also....Johns Hopkins but they are all pretty far out for you.
Hope your interview with Dr. Steinberg goes well. Ask him if he will be doing the surgery..its a teaching hospital. I always ask that. How many nodes will be removed?
Good luck and let us know.

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9 years 2 days ago #39643 by DianeN
Ok, we have a consult appt. with Dr. Steinberg for next Tuesday, 10/25. And, I have to say we are all excited if that makes any sense. It certainly has been a rocky roller coaster with all of the ups and downs just to get this far. But knowing that we're going to meet with an expert in the field has put us somewhat at ease.

His admin was fantastic (Mom called & scheduled everything & then I called back asking a slue of questions) and she's even FedEx'ing out a packet with a prepaid return envelope so we can send them copies of paperwork and CD's.

So, for the moment, I feel somewhat at ease just knowing that we're getting him in good hands.

In the interim, we are meeting with his current dr. tomorrow and I'm in the midst of writing a list of questions.

To Herb, I read to Dad what you wrote and he got a chuckle of it and wanted to say thank you.

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9 years 2 days ago - 9 years 2 days ago #39640 by Herb
Diane: tell your Dad I am 72 years old, I had Ileal Conduit 9/11/10. I am 6' 2" and not a skinny guy. Even with several things going wrong the worse being C-Dif I did ok and after over a year I am cancer free --- was I frightened --- yes --- was getting back on my feet a challenge --- yes but it was worth every moment for cancer can be beaten even by us old guys. I am sending positive thoughts his way. Take Care, Herb

Age 72 had radical 9/11/10 have conduit everything is fine, grateful to be a cancer survivor. Lost Dad and Brother to Cancer both in their 50's.

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