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Hi Everyone
I am a 65 year old male that has been diagnosed with bladder cancer. I am deciding between the Ileal conduit or neobladder surgery and I’d like to understand people’s experience with living with these two options. Challenges? Day-to-day routine? After several years of living with your choice, what you have considered the other option? Any information you can share to help me make a more informed decison would be helpful. Thanks
Andrea
Hi Andrea,
Please review the replies posted to Abarro’s initial post. See here https://forums.bladdercancercanada.org/forums/topic/new-ladder-and-using-a-catheter/
The replies are directly related to the question about the Neo Bladder. I am sure you will receive replies regarding the Ileal Conduit.
My best,
Andrea,
I have had an illegal conduit since April 2019. Normally, I get 5 days wear time from my appliance, sometimes more and sometimes less, but I can usually tell when I need to change. I do not have a good stoma and I know several other estimates who simply change at a certain time and day of the week as they get 7 day wear time.
Please contact Bladder Cancer Canada and ask to speak with some of the volunteers who have an illegal conduit.
Stever
Hi There,
My wife will be facing her surgery in mid January, therefore we are facing the decision of a neo bladder or Ileal conduit.
The surgeon has advised that 9 of 10 people choose the ileal conduit.
She is 47 yrs, and very active at her gym attending fitness classes daily.
Its a big part of her life, and so I’m worried that the ileal conduit won’t allow as much flexibility as she is used to with the urostomy bag.
Any feedback, considerations, experience anyone has would be greatly appreciated.
Hi Chuck,
I found your post to be very interesting. I can tell you that the physical location of patients often impacts what recommendation they receive from the medical community in their area/region. We have reason to believe that certain parts of our beautiful country are more comfortable and experienced with certain procedures and will have a tendency to recommend one procedure/solution over others. If I were your wife, I would definitely want to talk with folks who have had the Neo Bladder and the Indiana Pouch as potential options. Given her age and her love for fitness classes I would recommend talking with Zina a Peer Support Volunteer who I am very familiar with and who has the Indiana Pouch. Zina is heavily into physical fitness and is also and instructor; if I am not mistaken. Feel free to reply to this message and let me know if you and your wife are interested. I would be happy to make the introduction.
My best,
Chuck,
As Nightingale said, have your wife contact Bladder Cancer Canada and talk to others that have had the neo bladder or ileal conduit. Not sure if there are many Indiana Pouches being done now that the neo bladder is being done.
I have an ileal conduit and therefore a urostomy. I still do the same things as I did before but being mindful of the ostomy bag. There are protectors that are available and I have heard of a gentleman that still plays rugby with an ostomy.
There is a video on the Bladder Cancer web site that was done by a physiotherapist, Christina, and talks about pelvic floor exercises that will help in both before and after surgery.
Hi Chuck,
I also have an Ileal conduit, my appliances last on average 4 days, actually right now I aim for that, I’m relatively new at this, June 28th surgery, and I’m still in the process of deciding which type of system works best with me and their comfort level. In deciding on the diversion, like many here have suggested, I would talk to some who have had the different diversions before making a final decision. Personally I only had the choice of a Ileal or the Neo bladder, an Indiana pouch was off the table as my doctor does not offer them. I would have liked to have spoken to someone with the Neo bladder before my surgery to fully understand how they work. I do have a few regrets with the Ileal but they are more irritants than anything and I’m sure eventually I will work the kinks out. I’m now using a flat wafer, its much MUCH more comfortable than the convex I was using previously, I’m just starting with it, on day 4 aiming for 5 and no issues whatsoever I hope that continues but what to do with the 3 boxes of 5 of the convex LOL.
Best wishes to your wife on her surgery, its life altering for sure but there is light at the end of that tunnel, remember that….
Good morning all- I’m a 50 year old woman diagnosed in August 2024 with stage 2 MIBC. I’m just about to start round 2 of 4 chemotherapy prior to RC in January 2025. I’m looking for any women ( sorry guys) that have had a Neo bladder for any length of time and their experiences with it. Also, if anyone with stage 2 or more that has any information regarding bladder preservation and if they were given any options regarding that. I thought I knew this is what I wanted but when I went to my surgical consult last week, he didn’t paint a very nice picture and I felt he tried to discourage me and steer me toward the ileal conduit. I’ve been otherwise healthy to this point and don’t have any other medical conditions. Thank you in advance.
Hi Cleblanc,
Check out Hrudy’s post in this section. I found it by typing the word Neo Bladder in the search field. Here you go. It’s a good news story. BTW, if you want to talk with one of our Peer-to-peer support volunteers, please let me know.
Let me know if you have any further questions. Regarding bladder preservation, message me privately by clicking on ‘send a message’ under my name in the left margin.
My Best,
Re: bladder preservation
In general, bladder preservation therapy is called Trimodal Therapy (TMT), which consists of a) another resection as much as possible, b. chemotherapy and C radiation. The patient selection is the key for a successful TMT to have similar efficacy as RC in terms of recurrence free survival, progression free survival and over all survival rate. University of Toronto and its affiliated hospitals have been most active on TMT and I understand UBC/VGH is also offering TMT. In the US, Massachusetts General Hospital(MGH) has been proponent of TMT. Optimum patient criteria for TMT has been described by Dr. Girish Kulkarni, MD, PHD, FRCSC Head, Department of Surgical Oncology, University Health Network (UHN) / University of Toronto. Actually, there is a TMT clinic in UHN patient goes and get a consultation if TMT is a good fit or not. I understand you are already the 2nd round of neoadjuvant chemotherapy. That is okay as neoadjuvant chemotherapy is recommended for TMT anyway. So, I think you will still time to make the decision. Dr. Alexandre Zlotta of UT is also involved in TMT and presented the result of the clinical study of TMT vs RC by Canada and US at AUA 2023 meeting. I will list the link to the presentation by Dr. Zlotta and Dr. Kulkarni. If you have questions, please post your question.
Tumours < 5cm
Single tumour
Minimum to no carcinoma in-situ (CIS)
Good bladder function/capacity
Able to frequent follow up
Good kidney function
Links to videosDr. Zlotta’s summary of the US/CANADA clinical study TMT/RC
“www.youtube.com/watch?v=48A5BztM_aU”
Dr. Dr. Kulkarni presentation of TMT vs RC
“www.youtube.com/watch?v=P_Yzo8rri4Q”
Dr. Peter Black’s presentation of bladder preservation
“www.youtube.com/watch?v=YEtO5_WFPyQ”
Re: Ilial Conduit IC vs Neobladder
There is another urinary diversion called Indiana Pouch (IP). Because IP requires additional surgery training, limited number surgeons are experienced with IP in Canada In British Columbia, Dr. Peter Black of UBC/VGH and another surgeon in Vancouver Island are who have experience with IP as per my knowledge 4 years ago. IP makes a pouch using intestine and that is where urine is stored. From the pouch to belly button or near abdomen, a stoma is built just like IC but instead of collecting by an external bag, an catheter is inserted through stoma and urine is removed through the catheter. There are a few female – younger patients who had chosen IP instead of IC or Neobladder. I also heard that Neobladder can be more programmatic for female than male because of anatomic differences. But I do not know detail now but these female patients opted for IP rather Neobladder are because of some issues of Neobladder for female. Note that I am aware of a female patient who was successful with neobladder also.
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