Homepage – Forum › Forums › Non-Muscle Invasive Bladder Cancer › making a decision between neobladder and ileal-conduit
- This topic has 7 replies, 8 voices, and was last updated 7 years, 5 months ago by Paul D.
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April 5, 2017 at 12:56 pm #8491keith333Participant
Hi my name is Keith. I have just completed 2 years of BCG and have just had a recurrence of high grade cancer, which is non-invasive at this point and have to have a radical cystectomy. I am in the process of trying to make a decision between the neobladder and the ileal-conduit. I would like to have information from anyone who has had either surgery about potential complications experienced, especially in longer term relative to the neobladder. Thanks, Keith
April 5, 2017 at 1:38 pm #21536marysueParticipantHi Keith:
Welcome to Bladder Cancer Canada but sorry to learn that you have need of us. I didn’t have to go down the road of bladder removal but I’m sure that you will hear from others shortly. Failing that you can call the toll free number, leave a message asking to be connected with people that have had the surgeries and someone will get back to you.
I do have to ask a question- if your bladder cancer is non-invasive as you’ve posted, is there a specific reason that it was recommended for you to have your bladder removed?
All the best ((((HUGS))))
April 5, 2017 at 7:41 pm #21540SJayParticipantHi Keith
I had a RC with a neobladder last April and would be happy to talk to you. Send me a PM if you are interested.
Do a search in this forum for “neobladder” and you will see a number of posts on this question with lots of responses, including a few of mine. There is quite a bit of information there. It is ultimately a personal decision based on your own situation. Almost everyone is happy with their choice.Stephen
April 6, 2017 at 12:56 am #21541rock2013ParticipantI read your post a few times, my initial reaction is: NOT SO FAST WITH BLADDER REMOVAL. Did they tell you stage?. My cancer was high grade, stage 3 and muscle invasive including lymph nodes and the prostate. I took 2 weeks to decide neo or Illeal conduit. I was 72 years old and I chose Illeal conduit. I do not regret my choice. I sleep 7 hours every night using my overnight bag and I am used to my external bag. It is a personal decision. Getting a second opinion might be wise. Cheers and best of luck
April 10, 2017 at 2:19 am #21554cheryl9ParticipantHello Keith
I agree with getting a second opinion. It is my impression that some doctors may jump the gun. Mine was NMIBC “mostly low grade” as the doctor put it. I am sure I would be without a bladder today if I had a less experienced uro, though. Three months after initial surgery the checkup showed four tumors. The uro did an audible “oh no!” that put me on pins and needles. He said we would do another six BCG treatments but he wanted to meet with me in his office after that. I had never been to his office and I know that would have been the bladder removal discussion. Then he went and reviewed my file further. Came back and said there would be 3 BCG treatments and no meeting in his office. He was of the opinion that the tumors would have been there initially but too small to see. Then after a year, checkup showed CIS tumor. Uro said “yes, a setback but not to worry.” I didn’t listen. In the end, he was right. Been clear since.
Take care
CherylMay 30, 2017 at 4:20 pm #21700Barb1ParticipantHi Keith . I have not had my surgery yet for BC . I am going to have Neobladder with the Indiana Pouch as a back up . You didn’t so anything about the second on as an option . It is . Ask about it and ALL your options . Good luck with your journey . Barb
May 30, 2017 at 11:03 pm #21704RobinVHParticipantHi Barb. When is your surgery scheduled for? Mine is on June 30th and I’m hoping for a neo bladder.
Good luck to you.Robin
May 31, 2017 at 8:58 am #21705Paul DParticipantKen you say your bladder was burnt-out after seven years, after just 12 months of treatment I also am going through a problem with my urine retention. I could only hold the Maintenance BCG in for the basic hour on the 3 visits and I didn’t have any infection and the follow up Cysto proved there was nothing. The Uro’s said it was due to the nurses pushing the catheter in to hard and irritating the bladder when doing the BCG, I also don’t hold fluid in the bladder for longer than an hour and that is at a push. Was it a gradual process?
Sorry about the quick diagnosis Keith maybe question the speed of it.
Love & Best Wishes to all,
PaulD -
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