To neobladder or not to neobladder, that is my ?

15 years 6 months ago #21151 by mmc
I USED to cycle a lot. Due to issues with the prostate, I dropped it. My wife was doing Ride the Rockies and Colorado Rocky Mountain Bike tour and I wound up SAG car. :(

I'd love to get back to biking again. Still have my bike because I hoped to get back on it. Been a few years and I've gotten fat. The prostate pain kind of knocked me out of doing much (even swingin a golf club hurt).

Great info. Now I'm all excited about the possibilities! :D

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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15 years 6 months ago #21141 by timb
i can relate to that geo. i think i made my final decision on diversion as they were wheeling me down to theatre. but im glad i made it. and, mike, i cycle everywhere and never have a leak if that's any help. they also found low grade prostate cancer when they removed my prostate which is not at all unusual.

t

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15 years 6 months ago #21132 by GEO
Mike,
Good luck on your decision. It's a tough one.I struggled with it for over a month and like I said earlier, I really didn't make a decision till the morning of surgury. I was still talking to people who had been thru it at 11:00 at night the night before my surgury. I guess if everything goes fine it's better than sliced bread. The problems you are having now are the same problems you will have if the neobladder deal goes south on you. It wont be any worse. The option would still be their to go to the bag if things didn't work out. Thats the way I looked at it.
No matter what you decide, after surgury take your time and let yourself heal. I was driving among other things 2 days out of the hospital. I think I may have caused some of my own problems. No matter how good you feel take it easy and don't push it.
Good luck,
George

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15 years 6 months ago #21123 by mmc
Thanks to all for the great information.

It's a tough choice but from the descriptions I've heard, pretty much any option is OK.

I don't even have one and I have to wear the man pads just due to urgency issues. At times, I get VERY little notice and after a few embarrasing accidents, I wear the pads now on planes and in business meetings.

As for night time, I typically wake up every hour. I consider it a great night if I sleep two hours in between waking to urinate.

90% of the time it burns to urinate or is at least generally not comforatable. Sometimes hurts just walking.

A lot of this is due to BHP (enlarged prostate) so if I wind up w/cystectomy the prostate will go as well which should make those other problems go away.

I actually had a TUMT procedure scheduled to deal with the prostate issue when I started having the blood clots, red wine urine, and kidney pains so that procedure got put on hold.

That's why I started thinking, GEE, a bag might be nice. Hook up a huge one and sit through an entire meeting or sleep through an entire night (just once)! Also, if it hurts to urinate through your penis, it sounds like a fantastic idea to not use your penis to urinate! :blink:

It is also the reason I sent this message out for experiences because I didn't want to make a soley emotional decision. :)

Wouldn't mind the idea of 2 gallon neobladder though either. :woohoo:

But again, thanks to EVERYONE who responded. I think this thread would be great info to others facing the choices (depending on what their doctor feels is possible in their circumstances).

Mike

PS: CT/PET scan results came today:
-No Metastatic disease.
-mass found in thyroid (possible low-grade neoplasm. Recommend fine needle aspiration biopsy).
-something lower left protate, possible primary prostate cancer or inflamation. Need to follow up with PSA and exam.

Since I just had a PSA and biopsy on the prostate three weeks ago, I'm pretty sure it's just inflamation.

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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15 years 6 months ago #21066 by RAH
My only generalization opinion is that it seems that most people are happy with the diversion that they have.

I have an Illeal Conduit.
The disadvantages:
- There is a pouch and bag that hangs off my abdomen 24/7/365/life
- It took me a while (3 weeks) to find the right pouch that fit my body type and did not leak.
- I have to order supplies about once every three months
- I have to change my pouch once a week
- Wearing a traditional bathing suit at the beach does not cover my pouch and bag
- At night I connect to a tube that goes into a night bag slightly restricting my tossing and turning

The Advantages:
- I have not had a leak since the three week point (14 months), so no wet pants or a need for pads
- I wear pants with pleats, so no one knows I have a pouch and bag
- I sleep through the night without ever getting up (night bag's capacity is greater then my nightly output)
- I swim when ever I want (I pull the top band of my swim suit higher then the bag and pouch – even if I look like a nerd)
- I can ride a twelve speed bicycle with out leakage
- Last month I went on a road trip back east by myself. I used my night bag and drove without stopping until the gas tank was empty (this was just a test to see if I could do it.)
- If I was stuck on a desert island I would not need any supplies (although I would be peeing all over my self all day long)

Good luck
Rick

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15 years 6 months ago #21065 by bobwash
Hi Mike, I had neobladder 2-14-06. Had no complications.
Had no continence problem during the day although i did wear a pad for the first few weeks for security but never had a problem. I resumed normal activities after 3 mos.
(Doctors orders) but i walked and took care of myself in my own home from the beginning. I never needed any outside help. I still haveto get up at night to empty
bladder but do not consider it a big problem. I would still opt for the neobladder. One thing to consider-- some surgeons do a nerve spareing technique that makes it possible for a man to get an erection. this is something you should check out before having surgery. I chose to have the neobladder because i didn't want a permenant bag attached. Hope this helps. BobWash

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