Having RC 11/11/2015 Need help choosing Neo vs IP

6 years 8 months ago #49737 by GKLINE
Hello Dean
I have had my neo bladder for 7 years now. Since you have a great surgeon and has done a lot of these procedures, you have one big load off your mind.
I was 53 at the time of my procedure and my surgeon performed a nerve sparing procedure. I will call my operation a rousing success. I Am Alive !
Overall I will give my neo a 9 out of 10. I don't believe any choice is perfect. And the neo surgery has to be super perfect. I have had some friends who have had some very severe infections during recovery, that I did not experience..
But let's leave the recovery from surgery alone. This is the same with either choice.
I am very happy with my neo, maybe because I worked at getting it right after surgery. And my Dr always makes sure I void completely even after 7 years !
I still have nighttime incontinence issues and it is kind of embarrassing to have to wear men's diapers to bed. Yup, I get mad about bed wetting after all these years, but my wife assures me she would rather have me there than not. So, I have nothing to complain about. But I only have issues about once a week.
Don't get me wrong...... I am a very happy man.
I have no issues during the day..... As long as I stay on schedule with my bathroom visits every three hours.. I also do keeled (ask your wife about these excercises.... She will LOVE showing you)

I guess I am the poster child for the neo bladder. You can be too. But you still have to adjust your life to it and you must maintain your sense of humor about your body. But hey! You are alive!
I hope this helps in your decision making.
You just gotta be comfortable with your decision and live your new life with vigor.
Best of luck!

Sincerely
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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6 years 8 months ago #49735 by Cynthia
Hi Dean,

Sorry you have to be here but welcome to our community.

My RC was done by Dr. Stienberg and he is the best in my opinion. He did an Indiana Pouch with a navel stoma in 2006 for me and I have been very happy with it. I did not have an option for doing a Neo Bladder as a tumor had popped up too close to my urethra. They are of course very similar one is hooked up to the urethra the other has a stoma. They both take training and take time to get to what will be normal.

As for the IP it takes a bit of planning when traveling or being out and about. I use disposable catheters and carry a Ziploc bag with me at all times with small packs of lubricant and catheters and when I travel I just do the math and make sure I pack enough. I can honestly say except for having to plan to have supplies it has not changed my life I can still do the same things I did before.(just ten years slower)

I think at the time if I had been a man I would have tried for the Neo because it seemed the most like what had always been the normal. (woman seem to have more problems with Neos) As time has gone by and life has gotten back to normal I can honestly say I am fine with my choice and would have adjusted either way. I am just glad I have a convenient way to void and that I am cancer free.

I do not imagine this is much help but if you have question fire away and I will try to help. I hope someone with answer that has a Neo so that you can get a balanced view.

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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6 years 8 months ago - 6 years 8 months ago #49728 by Alan
Hopefully some of our contributors that have had this done will see this in the next day or so and have a chance to respond. As far as Dr. Steinberg. Yes, he has an excellent reputation!

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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6 years 8 months ago #49727 by Dnwlkr
Thanks for the reference. I have seen this and read through it quite carefully. I guess I am more interested in actual experience from those who have actually had to live with those diversions. Statistics just don't have the feel of experience.

I am having my RC done at the University of Chicago by Gary Steinberg. I am told he is the BEST.

Dean

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6 years 8 months ago #49726 by sara.anne
See? I beat Alan to the punch by 1 minute!!!!

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

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6 years 8 months ago - 6 years 8 months ago #49725 by Alan
Dean,

Welcome but, sorry you have to be here. I not had to have a cystectomy but, many on this board have. So, hopefully some will chime in.

I have bookmarked an excellent source for the 3 basic diversions in case some day I do face that.

See: my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversionn

OOOps and laughs at myself as I see Sara Anne just beat me to it! I type too slow. Keep us all posted as well all learn and good luck.

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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