Decision Time - Neobladder or Ileal Conduit

5 years 1 month ago #55676 by pete172
Replied by pete172 on topic Decision Time - Neobladder or Ileal Conduit
Hello Rooty, there is more info here {living with a neobladder} on this site. I have a neo, its been 10 months now and it has been a process. I'm 64 and active, altho there are still challenges with continence, I am happy and thankful I was able to have a neo. I was stage 3 high grade, my prostate was also removed as a precaution, thank God. They found early stage of cancer there also. I am now working with a pelvic floor muscle therapist, THIS IS IMPORTANT, get your doctor to set you up with a therapist soon after surgery. By the way, I was diagnosed in April of last year, had my surgery October 2nd after 12 weeks of chemo. It's a ride but you can do it. Just roll with it, there are tons of us out here. Neo is a little more work, in the beginning, but do the exercises and you'll be your old self. It takes time with the neo, and if I had to do it over, I would do it neo. I just wish I would have started therapy sooner. Be well, stay positive, God Bless. And drink, stay hydrated, very very very important...

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5 years 1 month ago #55675 by Herb
I am a 'Bag Man' and it is true most feel good about their choice --- I think if you have done if you will read up and get opinions I think you will come up with which way to go --- every alternative has drawbacks and complications. I have conduit and have done fine but I did get adhesions and did have to have another surgery --- plus sometimes it takes time to get right pouch and learn how best to prepare to put it on but I was helped by folks on this blog how to handle various bumps along the way! Regardless just know choosing life is what it is all about and whatever problems you might have can be over come. Had my operation in 2010 and cancer free and I am poking along at 79 year of age. This is good place to be for support on the days you get down.

Age 72 had radical 9/11/10 have conduit everything is fine, grateful to be a cancer survivor. Lost Dad and Brother to Cancer both in their 50's.

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5 years 1 month ago #55638 by Alan
I have not had to have the surgery. However, the vast majority on this site (still a small sample size) that have addressed your concern seem to adjust and are happy with whatever they have chosen. I have also read the same in a few medical/abstract articles. I know this doesn't make it any easier on your decision. It appears more than anything people are choosing LIFE!

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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5 years 1 month ago #55637 by rooty
I was diagnosed with Stage 2 bladder cancer in April and after an additional cystoscopy and biopsies discovered I also have prostate cancer. A radical cystectomy is now scheduled for October about 6 weeks after my 4th round of chemo.

My local urologist (confirmed by the Cleveland Clinic on a second opinion) says I'm a good candidate for a neobladder but is leaving the decision between that and an ileal conduit up to me. I've very conflicted and am 50-50 right now doing my research and watching videos, etc.

I've spoken with two individuals in each "camp" who have had the respective surgeries and all are glad they made their decision. I realize my sample size for feedback is woefully small so I'm looking for testimonial but positive and negative that can help me make my decision. The Doctor wants my decision by the end of August.

Any feedback is welcomed.

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