finished chemo now i need decide what surgery option for diversion

[Chucksloan]

Hello:  I am 68 yr male in fair good health.  Faced with a rest of life decision and the finality of the decision i am having difficulty.  Is there anyone out there that has the osotomy bag?  It seems like the least problems post surgery.  The Incontinence of the neo bladder doesnt ring well with me and the having to use a catheter regularly also seems like a big problem.  The surgeon was definitely suggesting the bag as my best option.  I understand the surgery for this is the easiest option for the hospital.  Is the hospital looking for the easiest and cheapest way to go ?

Sure would like to hear from anyone that has success or problems with either of the 3 options.  Needless to say its a decision I wish I didnt have to make.  Any follow up would be greatly appreciated.  Just finished chemo and waiting on surgery date.

i am not super active with sports but walk alot and love to travel.  so if the travel can fit into my final decision please let me know if there is any advice towards that.

I am extremely lucky i have a great wife and support from all my family.

[marysue]

Hi Chucksloan:

Welcome to Bladder Cancer Canada but sorry that you have need of us.  I haven’t had to go down the road that you are on but do know that many people have have chosen the outside pouch do well with it once they recover post op and get into the swing of handling pouch changes etc.

I strongly recommend in addition to posting here, that you call the toll free number and leave a message asking to be connected with a male peer support person that has had the surgery for both the outside pouch and the neo bladder.  They can give you the low down on what life is like post op and that may be a big help in guiding you as to the right choice for you. The third option is the Indiana Pouch which is kind of a combination of the two, but is not as common an option in many parts of Canada. I don’t know the reason why for this.

I do know that people with ostomy pouches can generally travel okay but it takes a bit of extra planning with making sure that you have enough supplies with you etc.  Again, that would a good question to ask of a peer support person that has had the surgery.

As for whether the outside pouch is the easiest for the hospital or the cheapest, I don’t know but according to most surgeons it is generally considered the simplest of the options for the patient surgically.  Some areas of the country have more limited surgical options because of which surgeons are available at those hospitals.  Not all surgeons are trained to do all the different options. If you do decide on a particular option and your current surgeon doesn’t do that surgery you could always ask to be referred to someone that does do it. All that being said, surgeons will often recommend a particular option based on a patient’s age, other health concerns and what issues the bladder cancer has presented so far. Once you talk to a peer support person that may generate some further questions to bring up with your surgeon and that will further narrow down your decision making.

You will most likely get some folks chiming in here in the next few days as well.  All the best with your upcoming surgery. Please do not hesitate to continue to post questions.  (((HUGS)))

[SJay]

Hi Chuck

This is mostly a copy of a previous post:

I had my RC April 2016 at age 64, preceded by 3 months of chemo. The doctor gave me a choice between ileal conduit and neobladder and didn’t push for any preferred procedure. I chose a neobladder and am reasonably satisfied so far. If you browse around (search with keyword ‘neobladder’) on this site you’ll find quite a few discussions on which option to choose. Most seem satisfied with what they have chosen. My decision was based on my lifestyle and not wanting to deal with the external ostomy appliance and discounted temporary issues such as training time for the neobladder or the length of the surgery. I’m here for the long haul. I have gone swimming, hiked, gone on week long ocean kayak and camping trips, travelled overseas and been skiing, so the neobladder isn’t preventing me from doing anything.

I rarely use a catheter. Maybe once a year. It isn’t a big deal once you have done it a couple of times.

I think the big advantage of an ileal conduit is that you can connect the big bag and have a full nights sleep. I get up 1-2 times each night and occasionally have a nighttime leakage.

Cheers
Sjay

[Stever]

Chuck Sloan,

I have a urostomy since the spring of 2019. I have very few problems with the external bag and I don’t have a good stoma. Travel hasn’t been a problem, just pack enough supplies plus a few extra in case of problems. Most people get an average of 5 days of wear time per appliance and I know one guy who just changes every Friday morning because it is a routine and he has no troubles in between. As Sjay said, I am hooked to a night bag at night and sleep through with no problems.

As Marysue said, call Bladder Cancer and ask to be connected to somebody that has had both types of surgery and they can fill you in on the pro’s and con’s of each.

stever

[Nightingale]

Hi Chuck,

Is there an option to preserve your bladder?  I am asking because this Thursday, we have a presenter who will be talking about his experience with Bladder Preservation.  He is coming up on 6 years now.  If you’re interested, private message me.  The meeting starts at 6:30 PM and is via ZOOM

My best,

[Donald123]

I had a radical cystoscopy in 2019, and after 2.5 years am still cancer free.  Being 66 years old at the time, in good health, and hoping for an active lifestyle, I chose the neobladder route.  Unfortunately I never reached full continence again, as about 10% or more men, so I wear depends all day for security.  After having to set my alarm at night for every 3 hours o avoid night-time leakage, I settled on wearing a male catheter at night.  That gives me a good night’s sleep and I awake well rested.  However I did still have some night-time leakage; perhaps weekly.  For the last few months I have been catheterizing each night just before bed and have had no leakage since.  I collect between 200 ml and 400 ml nightly.  The whole process takes 5-10 minutes including sanitizing the catheter and urinal.  There is no pain nor discomfort at all.

Looking back, I would still make the same decision.  Have never had an UTI, no shin irritation issues, and golfing, curling, biking. etc. are not impacted in the least.

Best wishes for your recovery.

Don

 

[carlo]

Hi I am 62yrs  I have been diagnosed with a stage 3 cancer in april and my Dr  recommends   a complete  RC , after have a turbt and 4  MVAC DD chemo treatment , I am very nervous , I have problems  deciding which  neobladder or urostomy, also preserving my bladder  which my Dr didnt recommend , I am opting towards a urustomy . would really appreciate some of your .

Carlo

• This reply was modified 2 years, 9 months ago by carlo.

[Stever]

Carlo,

call into Bladder Cancer and ask to speak with volunteers who have had both surgeries.

tell them what you have questions on and they will get volunteers to call you, one with neobladder and one with urostomy.

[Author]

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