Radical Cystectomy

[The Mad Bladder]

I’m still waiting for my appointment (“urgent referral”) with a urology oncologist, so I’ve been looking at the booklet on Radical Cystectomy. I wonder if anyone who has had one of the 3 techniques done-ileal conduit, orthotopic neobladder and Indiana pouch-could comment on the pros and cons of each one. Do you get a choice? In my opinion, the Indiana pouch sounds the best of the three.

[Saldcorn]

My neo wil be celebrating its first birthday on Sept. 21. I’m very happy with the choice I made. My surgeon left the decision between neo and IC to me. Interestingly, he wouldn’t consider the Indiana Pouch. Maybe it was me, the stage,… I have no idea. Frankly, I didn’t ask because it hadn’t been a choice that appealed to me anyway. Every week or so, I recognise another continence milestone. I thought things had gotten good, and then – wowza – they get even better. Good luck making your choice. It always seems people are happy with their decision.

[The Mad Bladder]

I finally have my appointment with the UO on Sept. 11th. This is because BCC went to bat for me and contacted him on my behalf!
I would still like to hear the pros and cons of each procedure from people who have had them.

[marysue]

Hi Mad:

I can’t comment for myself since I didn’t have to go this route but can say based on what I’ve learned from my support group members, it seems to boil down to a lifestyle choice.

If you don’t get the responses that you are looking for shortly, I suggest calling the BCC toll free number and ask to be connected with patient volunteers that have had the different surgeries so you can ask questions and get the low down on each. I suggest considering asking questions on how each person manages with daily activities that are similar to your own. That way it would hopefully help you decide which diversion is more suitable for you. ((((HUGS)))))

[SJay]

Hi Mad

Search in this discussion forum under “neobladder” and you will find a number of discussions on the pros and cons of the choices. including my own comments. I had my RC with neobladder April 2016. Generally there seems to be very few Indiana Pouch procedures, but I’m not sure why. In almost all cases people seem to be happy with their choice, whichever it is. Once you know for sure whether you will having an RC, please feel free to PM me if you want more info on my experience or want to chat by phone.

Cheers
Stephen

[georgett@mymts.net]

Hi Mad,
I had the ileal conduit (IC) surgery done in January 2017. It wasn’t my first choice as my preference was to not have to deal with an external appliance if I had other options available and I had spoken with individuals who had success with the neobladder. However, when I attended the appt with my oncology urologist, I was advised that a neobladder was not an option for me because I had radiation-affected tissue in that area from a previous cancer 18 years ago. So, we proceeded with the IC. I was a very active person prior to my diagnosis and have returned to all the activities I was doing prior to the IC. I can honestly say I have had no real issues with having a urostomy bag and have dealt with the mental and physical adjustments very well. A positive attitude goes a long way as does the support of those around you.
Good luck with your appt on Sept 11.

[Summerton]

Hi Mad,
Sorry to hear about your dilemma. I have an Indiana Pouch as a result of radical cystectomy surgery in October 2014. The reason I opted to go this way was my personal relationship with a family member who had an IP for 20 years, and had very little problems with it. There seems to be a lot of discussion about the Indiana Pouch surgery, and the seemingly low number of such surgeries. Some of the main reasons for this are; the extended duration of the surgery , the physical condition of the patient, possible physical limitations inside the patient e.g: scar tissue/prior surgeries etc. In addition, not all surgeons perform this surgery, whereas virtually all urologists do perform Ileal Conduits. There is no guarantee that this option can be performed until the surgeon opens up the patient and makes a decision as to viability.
I am very happy with my decision to go this route, and have very little complications.
I would strongly suggest that you contact BCC and ask to be put in touch with someone who has had this surgery.

Dave Summerton

[Saldcorn]

Hi MB,
I meant to send this yesterday, but just to let you know that you’re in my thoughts today, and I hope your appointment goes smoothly, that your questions are all answered, and that you get a little peace of mind.
Sue

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