To neobladder or not to neobladder, that is my ?

15 years 6 months ago #21062 by bookwriter
Replied by bookwriter on topic To neobladder or not to neobladder, that is my ?
I'm SailorMan's significant other. I think if you would be happy with the bag you should go that way. Course, I'm female and it's different for women. It's MUCH easier, post-surgery. Just my opinion . . . I like our doctor and the surgery is pretty amazing, but you have to make a huge time committment to the hospital because you're in & out for at least 6 months.

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15 years 6 months ago #21058 by Leigh
Hello Mike,

I was offered all diversion options leading up to my RC and I remember having a stressful time choosing the best diversion for me. Having different options just makes it harder to decide although the final call will of course be your surgeon.

Researching the operation procedures and reading forum members posts made it a little easier to decide. The neo-bladder from the very beginning was top of my list purely because it is the most natural replacement. The thought of using a piece of me to make a new bladder just made sense.

I worried about the length of time of the operation and possible complications although this would have been the same for any of the diversions.

My surgeons were specialized in the open incision route and I was opened from two inches above my navel down to my pelvic bone. Luckily my bladder cuff was clear of any cancer and the neo-bladder operation could proceed.

My Urologist did the preparation work of removal of the bladder and prostate and the Urology Oncologist made and plumbed in my new neo-bladder. The operation lasted 8 hours and I remained on the high dependency ward for 24 hours then moved to the regular Urology ward.

I had hoped and expected to be in hospital up to ten days but due to an infection and neo leak I spent 30 days on the ward.

The removal of the last catheter from my neo was an emotional learning curve which thankfully was short lived. I remember visiting the toilet the first time to urinate and I was scared although urinating was not a problem it would just flow freely….having the control to stop the flow was gone though which was kind of distressing.

After a day or so of hits and misses I gained control but up until that time I had to wear nappies. My neo bladder training became natural to me and daytime continence was very good unless I had sudden movements or coughed or sneezed.

Nighttimes I woke twice with an alarm to urinate and in the first few months I would have the odd accident. Wearing a man shield in my underwear was more than enough most times to catch any dribble.

It is now one year since my RC and I have 100% continence during the day and 99% continence at night. I now wake naturally once or twice a night to urinate and on the odd occasion if I am very tired or have drunk too much before bedtime I dribble into my shield. This actually wakes me anyhow and then I visit the toilet.

Honestly, I would have been happy with any diversion they had offered me at the chance of extended life expectancy or cure. Now looking back it was totally worth the ups and downs to have the neo diversion and externally I only have a scar as a memory. You will read on the forum that most people have adjusted and are continuing life just as before. Adjusting to whatever routine associated with the diversion entails….for my diversion that means:

Drinking plenty of fluids
Regular visits to the toilet every 2-4 hours
Wearing a man shield in my underwear during sleep
Waking once or twice a night to urinate
Remembering to takes pads for overnight stays and holidays

I exercise three times a week attending body pump, weight training and spinning.

I eat and drink whatever I like although my new bladder is temperamental with cheese and produce’s more mucus the day after and feels like urinating fine wet tissue. This does not stop me eating it however because I love it too much….

Mike I hope this helps….good luck with your PET scan and I wish great results for you….

Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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15 years 6 months ago #21056 by timb
I got my neo after two bcg failures. one a G2 recurrence and then a recurrence of CIS. I could have gone with another BCG but i reasoned that if i may have the neo down the line anyway, then i may as well get it when it had a decent chance of being a cure.

Im two years in now, so the my early experience is a little blurry. I think the others have pretty much covered it, so i'll say where im at now. Daytime continence is excellent -as good as before the op. I rarely think about it during the day and pee every 2 -4 hours but it's so integrated into my life now it just doesn't figure. Nighttime is a little different and I still wear a pad and get up once or twice to empty in the night. But it's just become me now so it doesn't really bother me. I just have to be a little more prepared when I go away. I don't seem to get any significant infections and I never catheterise. I have acceptable erectile function. As good as before but not consistently. I occasionally use the injection system or meds like cialis, levitra etc but not often. again, it's way better than i ever expected. I don't think there's anything i can't do now - at least to some degree -that I couldn't do before. Travel and staying over at friends is the only area i feel compromised in any way and that's mainly a question of being prepared. The biggest plus for me is that I only visit the docs a couple od times a year now for a chat a scan and a little peek. which, after 14 years of constant hospital visits, has made me feel like I have a new life!

all the best with your decision

tim

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15 years 6 months ago #21053 by SailorMan
Replied by SailorMan on topic To neobladder or not to neobladder, that is my ?
My neo is only 6 weeks old so I can't tell you much thus far. My doc (s) did most of it with the DaVinci robot which seems to take longer but is less invasive.

I chose the neo in hope of as normal a life as I can attain (I am age 52).

I have had a couple of infections that have knocked me down a bit and apparently my urethra is blocked (can't pee through it) right now so i wil lbe getting that opened this week on an outpatient basis.

Other complications during the surgery were unique to me, (old adhesions in the intestines, a bit heavy, too much abdominal muscle, my body not "liking" the robot at times)

At 6 weeks, I am working from home about 6 hrs per day (my job is supportive) and do go out a bit to walk - both in the neighborhood and in a large county park/wilderness area. I do not have much stamina though so the walks are prety short.

As others will tell you, get a surgeon who has done neo's before and knows them. I think that they all know how to do ileal conduits already. Some will tell you to try for a hospital where the staff (nurses, etc) have expertise with them as well but I will give you a caveat on that. My surgeon has privledges at two places, one is a much more major place but he advised me to go to the other smaller (but still good) place because I did not have other complicatins like a bad heart, etc. The rationale was that the docs had much more "pull" at the smaller place and could pretty much pick and choose who would take care of me. True to his word, I ended up in a private room (still classified as semi-private for the insurance) with staff that he personally trained. It was a good choice!

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15 years 6 months ago #21052 by harry s
My husband Harry has had a neobladder since 10/07. He chose the neo because it seemed the most natural of the diversions. Overall he is very happy with his choice. Daytime continence is 100%, as long as he uses the restroom every 3-4 hours. Daytime continence came fairly quickly, I can't remember the exact timetable, but he did have some difficulty when he went through chemo, which we've heard is normal. He has had a couple UTI's over the past year, the latest in 6/08 took a couple different antibiotics to clear completely. Fever in each case was the signal that something was going on. On the downside, his biggest complaint is night time continence. He hasn't acheived that yet. He wears a Depends to bed each night, which is really not that big a deal for him. He'd prefer to do that than have a catheter and bag. Others at this site have stated that they have nighttime continence, so I assume, like lots of other things each body is different...I think some of Harry's "problem" is that he is a very sound sleeper...and setting an alarm is not something he wants to do. I wake him up a couple times a night (when I wake up) but it doesn't seem to help, as soon as he falls into a sound sleep he leaks...but like I said the Depends works fine. Overall, he is very happy with the choice he made. However, I think you will find that others with different diversions are just as happy with their choice.

Best wishes on your journey. We will keep you in prayer.

Margot and Harry

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15 years 6 months ago #21050 by mmc
Pat,

I am seeing Dr. Grossman at MD Anderson.

Yes, I understand it might be up to the doc, but if I have a choice, I want to gather data ahead of time.

If I have to lose both kidneys then it's a mute point. However, transplant is an option on kidneys so then I would need to decide.

Quite frankly I have had enough pain with urination for enough years and with getting up in the middle of the night so frequently, that I would potentially be fine with a hose attachment and leg bag.

It was the best part of having a catheter for three days after my original TUR. If the catheter didn't hurt I would have kept it forever. No running to the bathroom and it was the only time I was able to sleep an entire night (2 of them) for years before and not once since.

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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