Looking for some help!

14 years 5 months ago #28066 by rudyskier
Replied by rudyskier on topic Looking for some help!
Pat thanks for the information. My Uro surgeon I am going to use is Dr Randy Everett. I am waiting to hear from his office about an appointment to discuss all of this. Thanks for the helpful info from all who have responded here I am now able to make a more informed interview. I am also looking into a Dr Michael Glode at the University of Colorado hospital. I will probably interview both and then make a decision based upon their experience and diagnosis.

Rudy;)

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14 years 5 months ago #28065 by rudyskier
Replied by rudyskier on topic Looking for some help!
KC thanks for the info. THis is a great support site. I have already gained a ton of valuable information. That was funny about not freezing your neo. Living in Colorado I ski often and would not want to freeze mine either. I am hoping that I may be able to ski by the end of the season, but if not at least next season.

I also love to ride my road bike and mountain bike and hope that after I heal up I will be able to get back to it.

Thanks again,

Rudy

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14 years 5 months ago #28052 by kcnorthstar
Replied by kcnorthstar on topic Looking for some help!
Hi Rudy,
Your posting really struck home with me because like you, my main concern was being able to stay active after bladder removal. I am retired and live in northern Minnesota by the Boundary Waters Wilderness. I canoe, camp, backpack, cross contry ski and love the outdoors. I had neobladder surgery a little over 3 years ago and can tell you that my life has not really changed at all. I am as active in the outdoors as ever. I would say the only real difference now is that I have to urinate about every 2 hours including at night. I have adjusted to the night time routine and it really does not effect my ability to get a good nights sleep. I even winter camp up here in below zero weather and my neobladder has yet to freeze up! My recommendation for you is to find the best surgeon you can. Neobladder surgery has varried outcomes which are mostly associated to the skill of the surgeon. My surgeon had done over 700 neobladders at the time of my surgery and was doing around 100 a year. In light of this, I would ask doctors how many they have preformed in total and how many they do a year. I would also ask how many of the neobladders they do end up being totaly succesful. I asked my doctor what he thought the odds of me having a correctly functioning neobladder and he said 90 per cent. One thing you have going for you is that you appear to be in excellent physical condition. I had more than one surgeon tell me that because of my active life style and good physical condition that it greatly increased the odds of a succesfull outcome and much less chance of complications. As far as recovery time that can vary greatly from person to person and again by the skill of the surgeon. As it turned out, I did have a complication that took two other minor operations to open up the connection between the neobladder and the urethera. I was able to be some what active after about 8 weeks, but it was about 8 months before I really felt confident enough to get back to all my old outdoor activitys. I think one of the reasons it took so long was just gaining confidence that my new plumbing was going to keep functioning correctly. I dont think I would go the robotics route, but that is just my opinion. If you have more questions or want to hear a more detailed account of my experience, feel free to send me a personal email.

KC

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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14 years 5 months ago #28048 by mmc
Replied by mmc on topic Looking for some help!
Rudy,

I went back to review the forum logs and put together a bit of the story of my experiences.

I put together the timeline and then the link with my questions to this forum (and all the great answers from others).

It starts when I had questions about neobladder and goes through my recovery period and times of frustration.

My suggestion is to follow each link in order and read my question/comments and then follow each thread through all of the responses and then come back here to follow the next link. Keep an eye on the dates so you understand how long (or short) the timeline is from one experience to the next.

Mike's story:

Questions I asked (and answers received) about neobladder prior to surgery:
bladdercancersupport.org/index.php?option=com_kunena&func=view&Itemid=114&catid=6&id=21043#21043
bladdercancersupport.org/index.php?option=com_kunena&func=view&Itemid=114&catid=5&id=21044#21044

Neobladder Surgery: 10/8/08
Discharged from hospital: 10/20/08
Posted an update about my surgery 10/23/08:
bladdercancersupport.org/index.php?option=com_kunena&func=view&Itemid=114&catid=5&id=21945#21945

Catheter removed: 10/28/08
Post about frustration (unrealistic expectations): 10/29/09
bladdercancersupport.org/index.php?option=com_kunena&func=view&Itemid=114&catid=6&id=22077#22077

Follow up Q&A: 1/16/09
bladdercancersupport.org/index.php?option=com_kunena&func=view&Itemid=114&catid=6&id=23545#23545

Questions and answers about UTIs with neobladder: 2/2/09
bladdercancersupport.org/index.php?option=com_kunena&func=view&Itemid=114&catid=6&id=23970#23970

I hope this is helpful. I'll give you a call later today before the football game.

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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14 years 5 months ago - 14 years 5 months ago #28041 by Patricia
Replied by Patricia on topic Looking for some help!
Well there are top hospitals but not all specialize in Urology or bladder cancer in particular.....Here's a listing of the top as of 2009
health.usnews.com/health/best-hospitals/urology-hospital-rankings/
If your doctor trained under Dr. Skinner or Dr. Stein at USC/Norris he's probably pretty good. But having said that ask him also how many cystectomys he's done with the DaVinci and how long his operating time will be. I've read some recent horror stories about the DaVinci and have posted it here under articles of interest. There is no training for the DaVinci..its hands on training and you're the guine pig. Often the proctor or doctor who is supposed to be doing your surgery is letting some new fellow play with the equipment..don't want that. Make sure HE is the doctor and noone else playing with the controls. Here is the article from UroToday...its free to register and read....
www.urotoday.com/index.php?option=com_content&task=view_ua&id=2224523

i hope you and Mike can have a conversation .
There are so many things to consider when choosing a diversion..Moffitt has written a pretty good paper on it but take it with a grain of salt...its just soooo important to have the right person doing this surgery.
www.moffittcancercenter.com/moffittapps/ccj/v3n6/a4.html
I'm not being a naysayer..i just want you to have the best. This is a hugh surgery.
Pat

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14 years 5 months ago #28040 by mmc
Replied by mmc on topic Looking for some help!
Rudy,

You must nearby. I live in Fort Collins. I had my surgery done at University of Colorado Hospital in Denver.

I travel a lot on business but if you have questions you can call or email me. I'll send you a private message.
If you're going to PVH you must be fairly nearby.

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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