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Living with a Neobladder, please share your story.

2 years 2 months ago #53686 by garya773
Okay so I recently was diagnosed with invasive bladder cancer. I went through chemo like a trooper and had my bladder and prostate removed 18 days ago. They removed the Foley Friday and now I am trying to train this new bladder but i have a lot of leakage during the two hours. I do Kegels but it does not seem to help. Any suggestion.

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2 years 3 months ago #53534 by GKLINE
Hello
Sorry! So Sorry! I should have seen this coming.
But Mr Miller........ I am a neo bladder success story. You will be one too!!
You will need a good team of support crew. A Great sense of humor! A talented Dr. and Me!

Having your bladder removed, and a new one manufactured is no easy deal. It's a long surgery and they only take the best patients for this. So..... you have passed the first big test! Congratulations.

That "team" is sooooo important. The recovery is rather long and a small but supportive group will make it easier. But they have to know everything going on in your head. Be honest and supportive of them. I found that my wife and I became much closer as we declared war on "c"

And that sense of humor? Make sure it is front and center in your life. Because your life will change. Things will take a while to get back to normal. And that will be a NEW Normal too. You will find that certain foods have a new effect on you. Cranberry juice will be your "go to" drink (don't ask me why, It just is) to keep urinary tract infections away. But........ the real reason for that humor is...... incontinence (your new special friend) Even after 9 years, I still have that. And it would drive me crazy, if not for my wife(team member) and her support. You will make a game of finding the right control device and none work perfectly. So there is that team and humor thing again.


Nine Years ago I had my neo installed and they replumbed me from there down. I also had "nerve sparing " surgery that allowed me to retain my ability to have an erection again (after about a year. So be patient. And you will have no liquid discharge anymore) and I have adjusted to my NEW Normal.
But having a neo has NOT stopped me from being my old normal self. I still ski, ride bicycles, golf, and race a sports car. My wife refuses to let me fall into the trap of self doubt. She is positive and keeps me positive (team and humor) I have watched my children grow and have danced with 2 of my girls at their weddings. (They were also a vital part of my team and knew everything) I still run a small auto dealership and spend a lot of time volunteering to help the community.

So, in closing, you have a road ahead of you. But if you have the will to continue (and you will find it inside of you)
you will enjoy the new life that is ahead of you (except for that incontinence thing.... Sheesh!)
And I still plan to dance at my third daughter's wedding!

Wishing you the best of luck

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]
The following user(s) said Thank You: ktmiller11, Scared

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2 years 3 months ago #53531 by Alan
ktmiller11,

It does look the Chemo regimen is normal based on what I have read and been told by others. I have not had to have a neo bladder but, I have 4 friends/aquaintences that have had them. They are all doing just great. One is recent, another 5+ years out and the others even longer. Any major surgery is no fun-I just had a triple bypass 3 weeks ago. Sometimes you have to do it (sounds like a Nike ad)! I am linking a bookmark than many of us have saved discussing what one can expect and the pros and cons of different diversions. See: https://my.clevelandclinic.org/health/articles/urinary-reconstruction-and-diversion. I am not sure hyperlink is working but just copy and paste.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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2 years 3 months ago #53529 by sara.anne
Sorry no one with a neo has answered your post....One of our best is out racing cars..really!

While I have not had a neo, and am female, I can tell you of several I have known. Besides George, who does race cars, others have continued mountain climbing, gone scuba diving...pretty much lived as they had before.

This is not to say that it was easy getting from where you are to where they are today. As you know, the surgery is
not for sissies and recovery can be a bear.

Let's see if someone else will reply

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: ktmiller11, Scared

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2 years 3 months ago #53524 by ktmiller11
I guess no one on this forum has had this procedure. Bummer!!!

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2 years 4 months ago #53399 by ktmiller11
I live in Germany with my wife and daughter. Recently, I underwent surgery to remove a tumor from my bladder. The tumor pathology report indicated that it was pT2a-b, the doctor recommended bladder removal after 2 cycles of chemo. The surgery will be done in Germany, so I can be close to my family. I am very scared and not sure what I can expect.

I have completed 2 cycles of chemo (each 3 cycle was three weeks) and did a CT scan a week after the last treatment. Good news is that the chemo has significantly reduced the tumor, I was glad to see that all this chemo sickness did have some benefit. This was supposed to be the end of the chemo and then remove the bladder this week. However, my Doctor wants me to complete another cycle before the surgery. He wants to reduce the size of the tumor even further before he removes the bladder. I do not like the idea of doing any more chemo, but I do like his reasoning and I will follow his advice.

I am still very nervous and scared, he will be creating a neobladder from my small intestine and that makes things even more nerve-racking for me. I was hoping to hear from other males that have had the neobladder surgery and survived to share their story.

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