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Radical Cystectomy Next Month, Neo vs Stoma

3 years 7 months ago #51008 by leachim101
Thanks again George.
good advice there. yes, attitude is important. and I will muster all I have.
I still wish I found more facts from personal experiences with the neobladder.
Plenty of support and information out there on urostomy and stomas and bags. Not so much on the neobladder.
m

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3 years 7 months ago #50996 by GKLINE
m
Do you have a support team? You are going to have a rather BIG surgery either way you go. Having someone there to help you through it is a MUST. And remember that the caregiver is also going through this too, and they need to be included in every conversation...... No holding back hear? The caregiver is having just as hard a time as the patient, except that they cannot feel the pain (so you gotta tell them everything)

I got through this and you will too. It will change your life and sometimes for the better. I think my relationship with my wife was transformed because we were a true team and realized that we were meant for each other. So there is that going for you.

I am a big believer in ATTITUDE as a road to recovery. Laugh at yourself ... A LOT!!
And machismo is best left under the bed.... There isn't enough machismo to just tough it out. Having a good sense of humor will help you heal and get through it.

Good Luck! We'll be counting on you to become a survivor and then you can tell others how to get through it.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
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3 years 7 months ago #50992 by leachim101
George, thank you, thank you, thank you.
I so want to hear from Neobladder experiences.
Thank you for sharing your experience.
May 10th, a month from now, is surgery date for me. I have till then to wrap my head around this choice.
m

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3 years 8 months ago #50986 by GKLINE
Hello from upstate NY.
I remember the same question from my surgeon. The neo was my choice but I was marked for a stoma just in case. Although I had very little time to make a decision and this site was not on my radar screen at that time. I am sorry you have to make this decision in the first place.
But I chose the the neo just because I wanted to be "normal" It was that and only that. I had nothing to compare it to.
After surgery I became obsessed with "making the neo work" I was very afraid of infection and cleanliness was a priority in my life. And I learned that "training" my neo was very important. Making it large enough... but not too large. I also worked to make sure the neo voided properly and left nothing back. And that meant a few ultrasounds to make sure. Is it perfect? Not exactly! I have nighttime incontinence issues after 7 years. And the incontinence issues early on were constant.

I have been a neo success story. And my Dr is very proud of my recovery. But there have been others that have not been so lucky. They have had infections and incontinence issues that have never been controllable. Since yo will not have any sphincter control, you will have to learn Keegle exercises(ask any woman that has had a baby)

Since the neo is a new bladder made from your small intestine..... the neo is a combination of the Dr skill and your patience and sense of humor. I am very happy with my choice and I am still able to laugh at the drawbacks. I guess that will be true of whatever choice you make.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
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3 years 8 months ago #50977 by Cynthia
Hello from the Berkshires I was treated at MGH welcome to our community. You are getting a handle on the information out there on the two diversions you are looking at but you asked about happiness with choice so I will share with you what is known and what I personally think after many years of dealing with survivors. A gathering of people with diversions was once asked to list the best diversion in thier opinion almost across the board they listed the type they had. What ever you have you will learn to deal with and it will become just a part of your life. I know that seem impossible right now but that is how it is with most of us. The people that are given the choice of thier type of diversion are usually happier with the outcome. That makes since as while having the diversion was not by choice you do have some choices and emotionally that may make it easier. Lifestyle is something that can make a difference in your choice. Many golfers come to look at the external bag as a great thing because they can get in more golf without stopping. Body image can be a factor for both woman and men, I have an Indiana Pouch and that had a lot to do with my choice. I hope this helps a little if you have specific questions please ask we are here.

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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3 years 8 months ago #50976 by leachim101
Thank you for moving the question to the correct place in the forum. I haven't used a forum before either.
I already went to Dana Farber here in Boston for a second opinion. They pretty much concurred with my physician at Lahey, and offered same option...radical cystectomy. They did offer a clinical trial with a Chemo/Radiation treatment, typically used for those that are not candidates for surgery, but in this case for those that want to try and preserve their bladder. I happen to be a Liver transplant patient as well (2007) and everything is working great in that department, so I opted not to do the clinical trial as it can be hard on the liver...
My Physician, Dr. Sorcini at Lahey has done 'hundreds' of neobladders, learning the technique in Europe many years ago...so I have great confidence in him.
Still, I'm reading here that it may take a year to get comfortable with a neobladder? complication requiring self catheterization several times a day? yiikes.
The Cleveland Clinic Synopsis is great. I have seen it before. I believe that Dr Sorcini said that they do not do the Indiana pouch. So, only two options here.
michael

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