Newly Diagnosed...Bag? Pouch?, Neobladder?

Ellen, How are you doing, exceptance is the whole deal ya know, my husband is 67 with the external pouch, because of a heart situation,,,I hope you continue to do well.Ginger Beane

Hi Linda,

I followed Pat's example and got an Indiana Pouch...spent hours reveiwing comments on this website and checking other sources of information so to make the best decision I could for myself. The first urgologist I had who did my TURB told me he could do a pouch for me...said he was good, had done lots of them and had only one leaker. Well, I didn't like the sounds of "leaker" even if it was only one. He apparently didn't do neo-bladders or if he did, he didn't want to share that info. with me or he didn't do them for women. I agree with you...it's just not right when doctors don't tell us there are three options...and tell us only what they can do for us.

I talked on the phone to one doctor who did do the neo for women but he matter of factly told me they had to cath themselves...I didn't like that idea. The surgeon that I finally chose, told me he could do a pouch for me but would not even consider a neo for a woman because there is too high a rate of hypercontinence and leaking. I didn't like hearing that news but came to appreciate his honesty after learning how tough it is for women to be successful with the neo bladder.

If you want to read more about my thoughts on the pouch, go to the Invasive section and read "Bummer", my response to Gracie, which was written yesterday.

I suspect there are women who believe strongly in the skill of their surgeon so much so that they will trust he can make the best decision for them, but we are the one who has to live with the results, not the doctors. I know you will make the best choice. You are asking all the right questions and being at the forum gives you a great view of how people adjust and recover. Take care, Melodie

In reference to deciding which diversion system to choose, a good thing to do is read every post in this forum, particularly, in invasive cancer section and mens and womens issues. Also, all the story boards. By the end you get an idea of all the possibilities, limitations, problems, et cet re which option to take. At least it gives you a long list of questions for your providers!!

Yeah it was that mirror thing under the thigh that got me or whereever the mirror was going to go with 2 hands and not being in my own bathroom....heaven forbid a restaurant, gas station,......whatever....i never did very good with the squat anyway...imagine trying to hold your pants at your knees, or your shirt above your waist...a mirror...a catheter......its kind of funny if not pretty pathetic...honestly i just couldn't figure it out....sorry female neos i truly applaud you...i'm just to spastic... Pat

Hello Linda,

No one, unless they have been there, can understand how intense and daunting this decision making process is. I'm at the same cross road and if it weren't for this site I don't know where I would be. You will find kindness here, caring, love and something perhaps even more powerful - information. Real time, from real people.

Ask questions, talk to others who have neos or pouches - they are so truthful it does sometimes hurt. But the more one talks about it and the more one knows - the less devastating it starts becoming.

I am strongly leaning to the pouch. The main consideration is the incontinence with the neo bladder and the possibility of having to self cath. One woman I spoke to had a not good experience with her neo. She was 49 when first diagnosed. She elected a neo and has to self cath all the time. I asked her how she does it and she said that she has worked out a system whereby she puts a mirror under her thigh while sitting so she can do the catherizing. I do not believe that she is the norm. I do believe she has had more problems then most. However, she never knew there were options! That to me is unforgivable. A doctor has a moral obligation to present the options. We aren't deciding on the color of our hair for heavens sake!

I don't think any of this is going to be easy for us Linda. But I do know we will get through it. And then our life will go on as before - only with some minor adjustments and perhaps a better appreciation and a whole lot of new friends!

I don't often get to quote my mom but since she survived WWII in Germany as a young girl - her reminder to me as I grew up was 'what does not kill us only serves to make us stronger'. I think I finally get that.

Let us know how how things are after meeting with the new doctor(s).

Best, Gracie

p.s. If you're in Arizona - Dr. Lamm's practice is in Phoenix... someone you may want to consult with.

Hello Linda, today is my one-year anniversary of my surgery for bladder cancer. I am a 66-year-old woman who choose to get the Indiana pouch. I went to NY Memorial Sloane Kettering to do the surgery. I was given the choice of the internal or the external bag. I read everything here on the board about each. The surgery for the Indiana pouch is longer than the external bag. The doctor said I was a good candidate for the surgery. He said if he had to hurry for any reason, i.e. my heart I would come out of the surgery with the external bag.

It’s hard to believe that one-year has passed since getting the devastating news that I had bladder cancer. Each day acceptance comes and its easier to deal with.
I will lift you up in prayer as I know this is not an easy time for you.

Sincerely,
Ellen