Neobladder or Ileal Conduit, unsure

@mstanhello I’m in the same process right now looking at all the options. My surgeon said the neo is kind of like a corvette, sporty but higher maintenance where as the conduit is like Toyota Camry; dependable/reliable low maintenance.
I’m an active 67 year old me and my wife exercise HIIT, strength, bicycle etc. 3-4 times week, love to travel, motorcycle trips etc. With my reading, it seems like the conduit allows me to continue all these activities with little trouble and as I continue to age, if someone needs to care for me, it will be a simple process.
If anyone has actual life experience, I’d love to hear about it.

Hi All -

I've made my decision. While I'm just at the beginning of my journey with bladder cancer, here's what I learned so far.

This is a very personal decision and there is not one size that fits all, take the time and speak with multiple individuals who have each, listen to their personal experiences, and determine which may best fit your value set and what you may be attempting to achieve with your urinary tract reconstruction and life post surgery.

My first goal is to beat cancer and if I could be assured RC will achieve that, personally it would not matter to me which one I choose, if I beat cancer I could manage either. There are no such guarantees for me at this point, so I have to make a call ileal conduct or neobladder?

I have family members and close friends with a stoma/bag and I'm not intimidated by the body appearances. I was not also afraid to self-catheterize so I felt I was starting with a fairly neutral position.

Neither one is without its own set of challenges and sacrifices, nor did any group seem to think either restricted what they wanted to do as time passed, and they adapted to their new normal. Even with complications and challenges along the way, each individual I spoke with was content with the decision they made in the end.

My decision was an ileal conduit, which better matched my person objectives:
Recover more quickly
Fewer possible complications
Get to my new normal sooner
Felt it would not restrict what I wanted to do after surgery
If additional treatment was necessary soon after surgery, it allowed me to focus on my next treatment not managing through my next treatment at the same time of learning and training a new bladder.
Should all go well, and I live to an old age, stoma/bag would be easier to manage for caregivers than catheterizing an old man 🙂

There was another thing which I learned through my conversations. In a world of seemly so much chaos, division, and just the fast pace of life in general I feel fortunate and blessed to have been connected with so many wonderful, kind, caring, and compassionate people in this journey of bladder cancer. While this a journey no one hopes for, you are not in it alone...your worries, struggles, & challenges are felt by so many others,,,, family, friends, colleagues at work, caregivers, and complete strangers at first which end up feeling like lifelong friend/family after a short conversation.

When diagnosed on August 7th everything seemed to stand still in my world even though it has been such a quick process to RC scheduled on 10/8. The last two month have seemed like two years. I'm content as one could be, feel confident in my health choices, ready for the surgery, have a great support group, an excellent care team at Dana Faber/Brigham Womens hospital so I feel I've put myself in the best position possible for a good outcome. Yes I'm still scared, but I've done all I can do; have faith in my choices and believes and am praying to get a little good fortune along way for the best possible outcome.

Take care my friends!

Love surgeons who can lighten a serious conversation! Guess I’m a Camry girl ;-). This has been my experience as well. The only problem I’ve had is very recent with some rashes underneath the device, possibly related to the padcev /Keytruda side effects. Continued incontinence, the potential need to self catheterize and inability to get a good nights rest were the main reasons I did not go with neobladder. My surgeon offered both. I wasn’t very comfortable with what might happen if I couldn’t train my pelvic muscles to urinate. I am 64 and became very active at gym doing functional strength training and walking after I finished my first 6 cycles of chemo in August 2024.

@141emp
Thank you for your reply- since deciding to go with the conduit, I haven’t wavered- surgery will be sometime in January.
Are you still able to maintain your fitness routine.
I’m a firm believer that mindset is really important and you sound like a positive person- I am too. I’m also lucky to have a great supportive wife. Thanks again.
Bob

My radical cystectomy and hysterectomy was done robotically. Six small incisions and literally no pain. I was discharged with Tylenol if needed after four days in the hospital. I even asked my surgeon the day after the operation if he really removed everything we had talked about because I felt great! I chose the conduit for a number of reasons. Prior to my TRBT, I had become increasingly incontinent with painful spasms, not sleeping for more than an hour at a time for two months before the TURBT removed a 3 cm tumor. Everything got worse after the Turbt,I couldn’t imagine continuing with that after the cystectomy. My new surgeon explained the pros/cons and I felt conduit was the best solution for me. I don’t regret it. Attaching an overnight urine collection bag allows me to sleep 8 hours! Changing the bag twice a week is easy. I have traveled by air and was working out several times a week until my cancer came back this year and I started treatment again. I had an easy cystectomy recovery and was ready for necessary chemo in 6 weeks. The only problem I’ve had with the bag is very recent with a rash under the device that is being treated with a foam applied during changes. My care team also works with phenomenal ostomy nurses who were a tremendous help.