I\'d like to introduce myself

Charlene,

The neobladder has a pretty high complication rate for women so I'd think very carefully about that one. Urinal incontinence and hyper-continence are both issues. Women have a shorter urethra than men and that complicates things. There are other factors as well. Also, if having to catheterize a neo, women are more prone to infection just due the nature of the anatomy.

I'm sure some of the women on this site can answer your questions about Indiana Pouch. The pouch is not external. It is like a neobladder except that it is not hooked up to the urethra. It is hooked up to a stoma that can sometimes be in the belly button or made to look quite discreet. Since you aren't hooking it up to an external bag it does not need to protrude from the skin.

Mike

Charlene,

I have had my Indiana pouch for sixteen-years. Each one of us who are here have had different experiences. Myself, once the training period was over, I never had a problem. I use the catheter to relieve the urine. How often depends on how much fluids I drink. My stoma opening in inside and to the right of my naval. My insurance does not pay for my catheters, but I found a medical supply online that is very reasonable. My doctor's nurse told me to simply wash them with warm soap and water, then let them dry. If I am traveling, I throw them away. I do not have any kind of reservoir on the outside. You would never know that the stoma opening is there by looking at my stomach. As far as a neo-bladder goes, I can not answer these questions except for the research I have read, and the stories of others who have a neo bladder. If I had to go through it again, I would choose the Indiana, but each person has to make their own decisions based on what is feasible. I hope this helps.

- Sylvia

Thank you all. There is nothing like wisdom coming from experience. And I appreciate all your thoughtful responses. I am investigating options for bladder replacement. I have a little time. Of course, nothing sounds good to me right now. I am on an emotional roller coaster.

I do have a few questions. I am reading about having to wear diapers with a neo bladder. Does that ever get resolved? I mean, is it possible to retrain yourself so that diapers are not necessary? Even at night?

And with the Indiana Pouch...is that always catheterized to release urine? or is there an external pouch? And how common is infection with it? Does it have to be cleaned out every time with saline solution?

For those who inquired about my doctor, etc. I am confident with my uro in Kaiser. He has done many radical cystectomys and a variety of different replacement options. I will rely heavily on his expertise to get me through this. I don't have the funds to go outside my insurance system, so looking for a better hospital or doctor is sadly, not available to me. But Kaiser does seem to be state of the art, and like I said, I am confident in my doctor.

thank you all again. I am very glad to have found this resource.
~Charlene

I think we all are all blindsided when we get a diagnosis of cancer that is invasive. At first, we are in a state of shock and denial, frightened, and devastated, but Mike and the others are right. Become your own advocate. Do your research. What is the best for you that will give you the best quality of life after the surgery. I have had an Indiana pouch for sixteen years,and once I recovered from surgery; I have a full life. I know it is hard to accept such a diagnosis, no one wants to face it. Find the best doctor, the best hospital and surgery team because that is very important. You have found a place here where you have support and can share. We understand because, even though we have traveled the road in a variety of ways, we have all faced cancer head on.

Charlene After the path report I was pretty convinced that I wanted as much of the tissue around infected bladder removed. It just seemed that the percentages improved with removal. Granted, I’m not a medical person but faced with a very difficult decision I wanted to have the bladder removed. We pretty much agree here that a second opinion is helpful. There are helpful folks here who have experienced all of the diversions so we might be helpful there. I found it helpful to take notes when I had doc appts. That way I could surf and read and re-read until I understood. I’m not stupid- it’s just that, never having been sick; I never had a reason to be very medically savvy.

Charlene,

Welcome to our group. Sorry you have to join but glad you found us.

TURP is a procedure on the prostate (which you don't have).
TURB is the TransUrethral Resection of Bladder tumor (also sometimes called TURBT but TURB is what we all usually say here).

For the 2nd TURB, if at all possible get it done at a major hospital with urologists who specialize in bladder cancer. You also will likely want one who specializes in Indiana Pouch urinary diversions.

High grade, muscle invasive is almost guaranteed to come back quickly and aggressively if the bladder is not removed. It is the gold standard of treatment.

If you do go straight for removal, then also try to get it done at a top place (as Pat already mentioned). Big difference in outcomes and not everybody can do each type of diversion well. You want a surgeon who does at least 50 a year.

I believe you do have some options with Kaiser, depending on what you need and what they have in terms of doctors. I suggest calling them. I think they have some sort of patient advocate program but I don't know since it's been so many years ago when I was on that plan.

I also had high grade T2 (muscle invasive) and had my bladder removed almost two and half years now. So far, so good. I got the neo but that's often not the best choice for women (again, as Pat already mentioned).

Best of luck and keep us informed of what's happening and keep your questions coming. Great bunch of folks here who have been where you are now and are happy to try to help in whatever way we can.

Mike