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4 years 6 months ago #58264 by TrpShtr
Replied by TrpShtr on topic Options: Trial study or Remove it.
Thanks Alan. Very encouraging. Will update my progress as it goes.
Chuck

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4 years 6 months ago #58263 by TrpShtr
Replied by TrpShtr on topic Options: Trial study or Remove it.
Thank you very much Duke. Your words are very encouraging. Will let everyone know how it goes.
Chuck

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4 years 6 months ago #58262 by TrpShtr
Replied by TrpShtr on topic Options: Trial study or Remove it.
So good to know there is support out there. God Bless you.

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4 years 6 months ago #58261 by TrpShtr
Replied by TrpShtr on topic Options: Trial study or Remove it.
Hey JustMe. So sorry to hear that is it so much trouble for you. I'm sure that if you do not give up and be patient with yourself, things will get better and you'll manage it in a livable way. At first I just wanted the easiest and quickest method available - (the bag). But after careful consideration, I have decided to go with the Neobladder if I qualify for it. I suppose we all (the BC family) need to pray for each other on a regular basis. May God be with you and give you patience and comfort.

TrpShtr

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4 years 6 months ago #58260 by justme558
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I had my bladder removed 5 weeks ago and if I could go back I would of never went with the outside bag. Actually, the Dr didn't even give me a choice, I'm thinking it must be an easier surgery to do. I have had nothing but trouble with living with this thing. I have leaks all the time, the adhesive just comes loose and leaks, I have woke up so many times soak and wet from urine. I thought it was small, it's not. It lies all the way down pass your underwear. It's kind of heavy too, feels like it's "pulling down" all the time. The nurse comes twice a week, we keep trying new and different products and bags, it's just a horrible thing for me. I wish I would have never done it this way. It might be ok for some people but not me.

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4 years 6 months ago #58255 by Cynthia
Replied by Cynthia on topic Options: Trial study or Remove it.
Welcome to our community. Many of us have faced the same decisions you are and we all come to our own conclusions for reasons as diverse as we are. For me the Indiana was the diversion of choice and I have been very happy with it. I tried the bladder sparing protocol and failed spectacularly. Please make sure if you discuss bladder sparring that you understand the down side from the radiation and the problems it can present with reconstruction. I can honestly was that 90% of the health challenges I have faced since dx are related to the after affects of the radiation not my diversion. If you search this forum for bladder sparing there are many posts on the subject here.
You are going to one of the best places in the country for bladder cancer half the battle with bladder reconstruction is the volume and experience of your surgeon. For example my local Urologist did the bag only and did three to five a year whereas the one that did my surgery did three to five a week. Ask us and your surgeon a million question, right alter my dx I kept a notebook handy so I wouldn’t forget to ask them. For example you will want to know from your surgeon what kind of diversions do you offer how may of them do you do a year? What kind of diversion does my personal situation qualify or disqualify me for and why. Do you do nerve sparing to preserve my sexuality?
We are here if you have more questions let us know.

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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