Has he looked into the Neobladder as a replacement option? I'm 53 years old and looked into that as an option during my treatments and follow ups to prepare myself if I ever have to go down that road. It seems to be a good option for someone who is younger and in good health otherwise.
His surgeon was recommended as he does lots of these operations.
He was given the option of ileal conduit and the indiana pouch.
We decided the ileal conduit would be better as less chance of infections, less fiddly etc. but now he's had the position of the stoma marked he thinks it would be very obvious that he has a bag. This is why he's started thinking about the indiana pouch instead.
He spoke to the surgeon yesterday who says he has up until he signs the consent form to decide which he would like. His cancer has spread into the bladder neck so he can't have the neo bladder he was hoping for. Maybe the indiana pouch is the next best thing but the surgery does seem to be less common.
Whatever diversion he chooses, the most important thing is the experience of the surgeon and the team doing the surgery. They should do MANY of these....100 a year or so...or they are "practicing" on you.
Why was the ileal conduit chosen? Were the other options discussed? Sometimes, due to the location of the tumors, this may be the only choice. Or sometimes it is the only one the surgeon feels confident doing.
This is an important decision, particularly at your husband's age.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
4 years 9 months ago - 4 years 9 months ago#48904by Alan
I have not had to have a cystectomy but, have bookmarked a wonderful summary site covering the three options in case I do in the future: http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion
Many on this board that have had one say they are happy with whatever decision they chose.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
It is a hard decision for most of us. I can not speak of the ileal conduit as I have a Indiana Pouch. I was 49 when I had my Radical Cystectomy and decided against the ileal conduit as I am allergic to glue a band aide will take the skin off in as little as an hour with me so I worried about contact dermatitis from the appliance. I also felt the Pouch would fit better with an active life style and be better for my body image, I was able to have the stoma placed in my naval so you can not see it.
I have never been sorry I had the Pouch as it has worked well for me. It takes some training at first but once it was I can honestly say it works well and my life is very normal.
If your husband has any questions I would be happy to answer them if I can.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society