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VA Hospital Experiences??

12 years 1 month ago #1693 by mikmckna
Bill,
I am not going to tell you that RC is a bowl of cherries but I can say that the fear and anxiety are worse that the proceedure. I will also tell you to involve yor wife through the entire process. I think initially it's much harder on your spouse. Remember... while you're fast asleep for 6-10 hours she will be pacing the floor of the hospital waiting for an update. It would be good for someone to be there with her.

In recovery, again you're out of it while she deals with the fact that you now have tubes and IV's and she just wants to make it better. It does take time but as I said earlier I am only 10 weeks out and from the exterior no one could tell what I have been through (other than losing 23 lbs). On the inside I am still learning to work with my new plumbing but progressing.

Just remember your wife... you are dealing with the pain and adjustments while she is dealinig with a situation she can not control and it is likely more stressful for her. Give her a hug and tell her every day that you are getting better.

Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06

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12 years 1 month ago #1691 by wendy
Hi Bill,

You're fortunate to be able to go to such a reputable institution for your surgery, you'll be in good hands with all the latest options and diagnostics available. That's at least half the battle right there.

All the best,
Wendy

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12 years 1 month ago #1690 by huffinmt
Hello -
Sorry about the slow post but I just got back in to see my doctor this afternoon. First of all I would like to thank everyone that has posted replies, it is greatly appreciated. This site is incredible and has helped me in so many ways and I am just getting started. Here is what the doctor's pathology report says: Bladder tumor - Urothelial carcinoma, grade III/III, with invasion of the lamina propria and muscularis propria. Can anyone help with a translation? My doctor thinks that I need to have a RC as soon as possible. With that advice I have made an appointment at the Mayo Clinic in Rochester, MN. I have been asked to arrive on October 27 with the surgery tentatively scheduled for November 1st or 2nd. I am extremely nervous about this whole thing and any advice that you could give me or my wife would be of great help.
Thanks in advance!!!
Bill

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12 years 1 month ago #1687 by mikmckna
Bill,
While I can not comment on the VA, i wanted to let you know that I am 45 yrs old and 10 weeks ago I had my bladder removed. The Doctors created a neo-bladder in my case. I'm sure you've read some on this by now but I wanted to say that I am doing GREAT.

Best Wishes
Mike

Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06

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12 years 1 month ago #1656 by rentanag
Bill,

I looked up the two VA Medical Centers you mentioned that would probably be where you would get your surgery and or treatment (am I right) SLC, Utah & Denver, Colorado.  When I went to their websites I didn't see anything about urology or surgery, especially for the complicated surgury you would need.  I realize they may not have everything on their site, but please be oh so careful about where they send you for your surgery.  They are associated with universities, but you don't want residents doing your surgery under the supervision of someone who hasn't performed many of these, you want someone who is very well qualified and who has performed many of these procedures.
Keep us updated, okay?

Lou

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12 years 1 month ago #1652 by wendy
Hi Bill,

Sorry to hear about your diagnosis. Are you definitely going to have your treatment at the VA, or are there other options, can you get a second opinion before committing?

From what I have gathered over the years, the VA is a bit old fashioned and slow to change their standard, which is to give people the external pouch/ileal conduit, when most institutions are performing bladder replacements such as the Indiana pouch or the neobladder.

Have you read the pages on invasive bladder cancer on webcafe?

The last couple of years has seen the popularity of pre-op chemo on the rise as well (for invasive blc).

If you post again on your situation, perhaps you should post it under the category 'invasive bladder cancer/cystectomy' in order to reach the right 'audience'.

All the best to you,
wendy

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