Unhappy with ileal conduit

Agreesive, high grade tumor. Invaded lining but not muscle wall. But afraid it may invade muscle wall, so wants to remove bladder, lump nodes, female organs. And soon

I am happy to,read your article. As I am also, new to this. Just had biopsy of my TURN operation. We traveled to Cleveland clinic last week for the surgery, 5 hours away. Today's results were not good. I also need my bladder removed. I do not want to go with BCG because does not sound good results. I am aggressive and high grade tumors. Just starting to educate myself on the different ways to urine.

Chris, Bob and Sara;
My first post and also a virgin in the Bladder cancer family. Just received biopsy report after TURBT and it appears I got a two-Fer, Urothelial carcinoma and high grade in situ, not in the muscle (so non-invasive). Thanks for your initial post Chris, I am making that same choice added to immunotherapy (BCG) possibility and like you, I am pretty active and intend to stay that way, skiing - boating - golfing. 62 yrs. young and VA Sacramento (Mather) is my primary care provider. Urologist that did the TURBT suggested the "play book" said Early Cystectomy but seemed enthusiastic about BCG now that some is available. With the high recurrence rate of this cancer and the prospect of multiple regiments of BCG I am leaning towards getting the cancers out asap and trusting UC Davis to whip up a nice neo bladder for me. Not crazy about the idea of removing original equipment organs from my body but I have seen too much cancer in my life to really want to mess with it. The exact issues you raised are my concerns about conduit and/or pouches. I assume the doctors involved in your care understood your activity level? Is there any creativity/customization that surgeons are willing to do in the industry or is it pretty standardized? Participating in a forum like this is new to me so forgive any faux paux on my part.

Thanks for all your info chris. Very helpful. I am 79 and just got the pouch/stoma. Hoping to find a new normal.
Bob

Pando40,

I don’t like the constant pull, on your stomach, the changing of the bag, the leaks,
Can’t sleep on my stomach. The pouch is made inside your body but you still have to drain it, that has leaks too.. for me being so active and movement. Neobladder is made inside your body, you teach yourself when to go, that has leaks too but you go normal, I rather wear depends until trained. For men who are in good shape and like their bodies, I think it’s the best. Just do your homework. You can go from neobladder to bag but not the other way. I should have bet on myself and surgeon..but It just been 2months running and hitting the weights and just being me with an extra piece of clothing. Think about how much products you need for each type ileal conduit, pouch or Neobladder.
Chris