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newly diagnosed; where do I go from here?

8 years 10 months ago #34662 by GKLINE
Joe

Wow! Traverse City MI! What a great place! My In Laws have a place there(met my wife there; honeymooned there... had the greatest dinner @ Bowers Harbor) and when I had this cancer thing going, my wife and I were seriously going to chuck all the stuff from NY and move into the Traverse City house(technically Acme)and enjoy the area full time.

As for my hospital stay.... 8 days... no complications
Surgery was nerve sparing and I have a neo-bladder made from my own intestine. It took 10 hours to perform.
I was really drugged up for 24 hours but I DO remember walking about 25 yards(seemed like 25 MILES!) the first day.
Had a catheter and a drain tube in for about 2 weeks after I came home. Man, what a relief when they came out! I spent 6 weeks at home recovering before I went back to part days. I may have pushed it to a shorter period, but I had to come to grips with cancer and kind of put work on the back burner!

I have only a FEW lingering issues. And I can certainly overcome them, considering the alternative. I am slightly colder than before. I remain somewhat incontinent at night. I have had a major change in bathroom procedure... For Christmas this year I would like to have a Firm stool! :laugh: For once. I have no idea why that changed!

Since my wife attended MSU I have to say " Go Sparties"

We met at Northwood university in Midland MI!

Hope this helps.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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8 years 10 months ago #34661 by mmc
Joe,

I'm two years out from my RC and cancer free. I got the neobladder. I had some complications so my story is a bit different.

I only had Stage 2, High Grade so I didn't need any chemo. Based on what you described as your situation, I think chemo is highly likely.

I was in the hospital for 12 days. The reason was post-op ileus (intestines didn't wake up properly and there was some blockage). Didn't realize the blockage part at the time or they probably could have gone in right then and fixed it. It was right at the resection point of the intestines.

After getting my catheter out post surgery, it took about a month and half before I had pretty good day time continence. I wasn't emptying my neo enough however so I had to start catheterizing myslef. Sounds awful but is no big deal really. Once the prostate is removed, there is no prostatic sphincter blocking the way. That's the part that would hurt like the dickens back when I would have cystoscopic exams.

I never did get night time continence and I had a surgery for hernias and the intestinal repair where the nurses didn't realize that mucous was blocking my foley catheter. That caused my neobladder to stretch to over 1000cc. Normal is 400-600cc.

I'm not bothered by the lack of night time continence because now I wear a condom catheter. Goes on like a condom but the tip gets connected to a night time drainage bag. I sleep all night and don't have issues.

Also, haven't regained full normal function sexually. I can use the shot and that works fine. Now on daily dose of Cialis and am noting improvement. Have high hopes for regaining function in the future. It can take anywhere from a couple of months to a few years for that to happen.

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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8 years 10 months ago #34659 by upnorth1414
Hi George,

Thanks for getting back with me so quickly.

Glad to hear your expereience with this went well. As you can probably guess I find this daunting and scary.

I'll ask you the same questions I asked Jim; how long was your stay in the hospital and how long was your recovery at home before you could return to work?

Also any tips you can provide to make my recovery comfortable would be much appreciated.

Thanks,

Joe

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8 years 10 months ago #34658 by upnorth1414
Hi Jim,

Thanks so much for your quick reply and encouragement.

Glad to hear you are capable of doing everything you were doing post op. If I can just just get back to hiking and canoeing and enjoying the outdoors, I will be one happy man.

May I ask how long it took for you to recover? Both at the hospital and at home?

Glad to see a fellow Michigander/Michiganian on here. I live up in Traverse City for almost 20 years.

Thanks again for your support.

Joe

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8 years 10 months ago #34654 by GKLINE
Hello Joe

I had my neo installed in on 08/08/08 and I have returned to the same person I was before. I had nerve sparing surgery and although it took a while, I have returned to a normal sex life.

The surgery was quite a big deal and indeed no walk in the park. But, it was the preferred method of ridding me of cancer. Surprisingly, even though It was big time surgery, many of my friends think I had a "lite" version of cancer because I forced myself to recover. You will do this too. I am sure.

I know it is a scary time. But, after looking at your posts, it appears you are on the right path to ridding yourself of cancer too.

Sorry you had to find us this way. But......Welcome!

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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8 years 10 months ago #34652 by Humpy
upnorth1414 wrote:

One of my goals is to find a few men who have gone through this procedure to see how things worked for them.


Hey Joe, I had a RC & Neo May 2009. Though not a walk in the park, it is not the end of the world either. Looking back, I am glad I did it. It is a small investment in time, to guarentee life. I have returned to doing EVERYTHING, i was doing pre op.
Yes, EVERYTHING!

Jim

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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