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Neobladder

7 months 1 day ago #57079 by pete172
Hi, I have a neobladder 17 months now, and the only issue is the incontinence. Yes I would do it again. It was done in New Jersey, at RWJ New Brunswick. Being 56, I feel is young, and neo is the way to be as close to normal as you can be. I was 63 when diagnose stage 3 invasive bladder cancer. the neo allows me to be and stay active. My only draw back is controlling the sphincter muscle. Good luck, ask questions. God Bless
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7 months 4 days ago #57061 by sara.anne
I have a sneaking suspicion that this diversion is the only one the urologist is comfortable performing! Just a suspicion, mind you. There are some medical reasons (location of the tumor, age of the patient (old), physical condition of the patient)....where this MIGHT be the only option. I would want to know the doctor's reasons for this recommendation (it is the easiest doesn't anser the question.)

Your sister might want to quickly request a second opinion at Emory. If she has to delay the surgery a week or so this won't make any difference in the outcome. She is going to live with this decision for the rest of her life and there are lots of years ahead of her.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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7 months 5 days ago #57060 by GeorgiaDawg
Her Urologist suggest the external bag. We see the surgeon on Monday and her surgery is more than likely going to be performed in Atlanta Ga. I’m not sure how many they do a year there. It just has her so stressed out over it, she had a hard time with chemo bringing her blood down, I hate seeing her stress over this. She is only 56 years old.

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7 months 5 days ago #57054 by Alan
I have not had a cystectomy. However, a very good read of pros and cons of the 3 diversions are found here: https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion. You will need to copy and paste this into your browser. As Sara Anne said, you want a URO that does many of these a year. 25-35+ from reading I have seen.

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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7 months 5 days ago #57048 by sara.anne
I have not had a cystectomy, but have heard a lot from those who have. For anatomical reasons females seem to have many more problems with neobladders than males, with lots reporting either incontenance or hypercontenance. IF I were considering one I would find a place that does LOTS of neobladders in women with a high success rate.

What does her urologist suggest? I think that I would seriously consider an Indiana pouch if I were facing this. Many urologists are really only trained in the external pouch surgery which is definitely the “easiest. “. You want a surgeon whio has had lots of experience in the diversion you prefer.

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Sara Anne

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

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7 months 5 days ago #57047 by GeorgiaDawg
My Sister has just finished chemo before bladder removal surgery. She had planned on doing the Neobladder surgery but her urologist told her that patients with them have a lot of problems. We see the surgeon next week. Anybody that has had the Neobladder, could you give me your input on it, any problems, would you choose it again, leakage, etc All help will will be greatly appreciated !!! God Bless !!!

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