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So Annoyed

1 month 2 weeks ago - 1 month 2 weeks ago #58066 by AMG
I too had RT2 and researched all my options. Initially the surgeon said I had the three options but my doctor said I could not have a neobladder because of the location of the cancer. I too was beside my self but continued to research and found that the neobladder is very difficult for women and has a very high incidence of incontinence. In addition there was possibility of catharizing from the urethra. That sounded uncomfortable to say the least. My surgeon recommended the Indiana Pouch. That is what I chose. It was a very difficult recovery period for me. Surgery last April- felt like I spent my whole day in the bathroom catharizing for months. I had a lot of issues leaking from my belly button. I no longer peed my pants- I peed my shirts! Slowly but surely my pouch's capacity to hold liquid increased and now I only catheterize every 3/4 hours. I finally felt myself again around October and started not being so terrified of springing leaks. Life is back to normal. Now I carry my catheters in a makeup bag in my purse and use public restrooms. It takes a bit longer to urinate but being cancer free makes up for that minor inconvenience.

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1 month 2 weeks ago - 1 month 2 weeks ago #58065 by Cynthia
Lee lee, I had my RC done at the University Hospital of Chicago by Dr. Gary Steinberg, and have done well with it since 2006. I had done a bit of research and with the problems woman sometimes have with the Neobladder I felt that the Indiana was my first choice. In my next post to you I will get further into this but due to the radiation to my bladder I could not find anyone in Boston that would do anything but an external appliance, I live in Western MA so Chicago was a choice for a reason. I needed someone who had a LOT of experience and Dr. Steinberg also had experience in urinary reconstruction following radiation.
No matter what type of diversion you have there will be a learning curve. Both the Neo and the Indiana have to be trained. With the external appliance it finding the right bag and adhesive and the such, but we can talk ,more about that when you get there. But that is just the beginning what is it like after the training and the healing? For me the Indiana has not changed my life as much as one would think. My stoma is in my navel so has not really affected my body image and my love life is fine. Since I have had it I have hiked, snorkeled, swam and done everything I would wish to. By the way I am typing this from the road I am returning on a solo road trip from MA to FL and will have my 63rd birthday in a few weeks.
As for how often I catheritize it depends on how much liquid I drink just like before. It tends to be about every four hours and at night I set my cell phone to wake me up after four hours. I have a collection of makeup bags that I carry in my purse with my supplies. Other than making sure I have supplies it really isn’t a big deal. It has never hurt to cath and to tell you the truth in public restrooms it is nice to not have to sit down, who knew? (men have known this for ages, they could have shared.)
I still have a few hundred mile to go before I hit home so I have to run. I am sure you have more questions so just let me know and when I get home this evening I will give you my experience with the bladder sparing protocol.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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1 month 2 weeks ago #58062 by leelee
Cynthia, would you please tell me more about the Indiana and the specific doctor that did your surgery. If the cancer had not spread to the urethra would you still have chosen the indiana vs the neo bladder?

I have t2 muscle invasive bladder cancer and I am in the midst of decision making after 2 turbt surgeries (late june and late july).

THANKS for any and all information!

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1 month 4 weeks ago - 1 month 4 weeks ago #58037 by Cynthia
Hi Grandma, Sorry you have to be here but welcome. I had my Indiana done by one of the top guys in the country he does 3-5 Radical Cystectomies a week. I once asked him if hypothetically he ever needed a diversion what he would pick and he said if he was a man a neo bladder and if a woman an Indiana. As Sara Anne said about a third of woman for reasons they are still looking at will either be hyper-continent or incontinent. My cancer had spread to my ureathia so that also had to go and the Neo was not an option so I received my Indiana in 2006. It is really convenient in several way. I no longer have to worry about having to do the balancing act we women do in public restrooms as I can urinate standing, who knew how convenient that is? I wish you could have the diversion you wished for but like me I am sure you will adjust. I can honestly say my diversion has not stopped me from enjoying life at all. It is an adjustment but you would have had to train and adjust to any diversion. Make sure what ever type of diversion you have it is done by someone that does a high volume of that diversion. If you have questions I am here and will help if I can. I am traveling today so It would be tonight or tomorrow morning but I will get back to you.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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1 month 4 weeks ago #58032 by sara.anne
Sorry to hear about your diagnosis and your issues First from your user name I assume that you are female The procedure that the doctor spoke about first is called a neobladder . If it works it can eventually, after training, act almost as if it were a real bladder . Notice that I said if it works . For some reason related to our anatomy women have many more problems with neobladders than males do . While some are successful many more either find themselves incontinent or hypercontinent which means they have to use a catheter to void. This is also the most complicated surgery .

Our president , Cynthia , has an Indiana pouch o continent reservoir which is the “belly button “
method that you mentioned. While I have not needed a cystectomy I have decided that this is the option I would choose if it comes to that. I have been with her r a lot and if I didn’t know I would never guess tha she was not “normal.” She carries a catheter in a small cosmetic bag in her purse and heads to the bathroom about every 4hours to drain the reservoir. It is like inserting a straw into a bottle. There is nothing on the outside to make a bulge. She can wear a swimsuit perfectly well,

For this diversion a piece of the intestine is used to make a new bladder which is accessed via a stoma in the belly button or near by. Like the neobladders there is a bit of a learning curve. I don’t want to mislead you . None of these procedures are simple surgery and they all have a significant recovery time . However once the bladder is gone the cancer it held is gone also . Patients seem to adapt well no mater which diversion they choose.

You have been hit with something that you did not expect and it will take time do you come to grips with it But you will do well I hope that Cynthia will be able to respond to you also but she is traveling right now and so it may be a while

Best of luck to you and be sure to ask any questions as they come up

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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2 months 2 minutes ago #58031 by Grandmato3
I was diagnosed with bladder cancer back in March of this year and to me it was no big deal. I told the doctors that I would do what I had to do.

I just recently finished my 12 weeks of chemo without many issues. My oncologist was terrific and did everything he could to make me comfortable during treatment.

Now is the time to talk surgery. when I first saw my urologist and discussed my bladder cancer treatment and surgery, he told me that I would have new bladder made out of my intestines and it would be almost as if I had my own bladder. I was ok with that.

Today I go meet the surgeon who is doing my surgery and he tells me that I do not have that option. I will either need a bag or learn to drain my urine through my belly button. Needless to say I am in shell shock. For the past 14 weeks I was thinking I was getting a new bladder and now I get a bag or a tube. Needless to say I'm already depressed and I am angry. This news is 10 times more difficult that my cancer diagnoses was.

Just looking for some advise for those of you who have either devices and how you coped with the changes in your life.

Thanks!

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