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Homepage – Forum Forums Muscle Invasive Bladder Cancer Outside bag versus neo bladder – pros and cons

Viewing 11 posts - 1 through 11 (of 11 total)
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  • #8510
    patient58
    Participant

    My husband is facing the surgical removal of his bladder. Option one is the stoma and outside bag. Option 2 is the neo bladder. Any advice on each of the options? what is the reality of each of these procedures as well as the side effects and impact on quality of life? Sharing your experience would be invaluable information to us in making our decision.

    #21728
    Gord
    Participant

    Hello Patient 58.
    Sorry that you have need of our website, but also very glad that you found us. It and the people on it have been a great sources of encouragement and support to me during my bladder cancer journey. Today is the four year anniversary of my radical cystectomy and neobladder. For me it was “bladder gone, cancer gone” so this is also my 4 year anniversary of being cancer free. In short, there can be life, and lots of it post RC and diversion. Cling to that thought. I can’t really speak to the outside vs inside thing as I have not experienced the outside bag, but I do know from reading posts that either are acceptable outcomes and people get used to the diversion they choose/end up with. I am very glad I have a neobladder. I was 53 at the time of my surgery. Life is good. Life with a neo is good. It’s all good. The surgery is a little more complex than for other diversions, recovery is a task and a half, and not a lot of fun, but very doable. I returned to work 3 months post RC, albeit part time and with reduced energy. Once your neo is trained, you can go three hours or more without voiding, it takes a few weeks to get there, and there are a lot of wet days and accidents in that time. Most however, achieve daytime, and not quite as often, full nighttime continence. I did. I had a couple of infections, and had to go in for a tune up a couple of times (minor day surgery), but nothing too serious. My issue is that I am one of only 10% of male neo recipients that has to self catheterize every day. At the start the thought curled what little hair I have left, but the actual doing of it is not at all a problem, or painful. Takes a couple of minutes more in the bathroom, and without a prostate, but with a little gel, the catheter goes in and out no problem. Not like those nasty and uncomfortable cystoscopies. I am active, I travel, hike, work full time, all sorts of things, with no worries about external appliances, or accidents. So life four years on is more than good, its great. So give the neo some serious thought if you are a candidate for one. Most of all, stay positive, and whatever diversion you end up with, life your life to the full.
    Gord

    #21732
    Tom M
    Participant

    Hi, Patient58;

    The choice of diversion systems with a radical cystectomy is often a difficult one – especially if the patient has to make it himself. If you haven’t already done so, I would urge you to download the Patient Guide for radical cystectomy from this BCC site. It gives good descriptions of the alternative diversions.

    The choice is not always purely a matter of preference but can also depend on age, general physical health, body shape and lifestyle. If your husband is a 40 year old male model who likes to surf, I would seriously consider a neobladder. On the other hand, my experience with a Stoma and external collection bag has been most favorable. Either diversion is going to take some getting used to but I have enjoyed full nights’ sleep and, other than changing the appliance every 3 or 4 days, there really is nothing to it. He would have a funny looking Stoma sticking out of his stomach but my attitude has been “So what!” .

    I think it’s safe to say that the external bag is easier – both from a surgical, recovery and training point of view but there are many of us cystectomy patients who are pleased with whatever diversion we have. I suggest that you review the pros and cons of both alternatives with your Urologist and see if he has a strong recommendation.

    Whatever you and your husband choose, I wish you success and many more years of cancer free enjoyment. Call the Bladder Cancer Canada toll free number if you want to speak to someone who has ‘been there’.

    With support,

    Tom M.

    #21734
    rock2013
    Participant

    I could not agree more with Tom. The diversion is a personal choice and requires some time and research to make the decision. When my bladder was removed 3 years ago I was 72 years old, and not a surfer or a centerfold model. My days of wine and roses were pretty well ovee!. I elected the exterior pouch. The age is a very important factor when you make the choice. My Urologist/surgeon left it to me of course he answered my questions. You might think of getting a second opinion. My cancer was high grade and stage 3 muscle invasive, it had gone through the wall if the bladder to the prostate and lymph nodes. I am very lucky to be Alive and well and the cancer is gone. I am a volunteer and I talk to patients coast to coast about my own experience. Best of luck to your Dad

    #21735
    SJay
    Participant

    Hi P58

    I had my RC with a neobladder just over a year ago at age 65 and things have worked out quite well. I chose a neobladder as I thought it would be less of a hassle when doing active things. I’ve just returned from a 5 day ocean kayaking trip off of Vancouver Island followed by a 7 day hike on the West Coast Trail, so you can see it isn’t holding me back. If you do a search in this forum under “neobladder” you’ll see some threads discussing the choice, including a few of my posts with my experiences and reasons for my choice. Overall, everything I’ve read indicates that people are usually happy with whatever choice they make. You or your husband are welcome to give me a call if you want to talk about it. Send me a PM.

    Cheers
    Stephen

    #21737
    RAC
    Participant

    I had a RC 18 months ago and have an outside urostomy pouch. The choice for me was based on what I was told by the urologist and my personal issues with catheters. All the power to those who have a neobladder with no issues. I have heard good stories about people’s ability to regain continence. I was afraid to try and have had no issues with my stoma and external bag. I was always a poor and light sleeper so getting up to void once or twice a night was normal. With an external bag I just hook up to the night back and sleep all night. From what I understand, most people with a neobladder need to set an alarm in the night in order to void. An external pouch is easy at night and I can feel when it is full during the day.

    I have just posted my own question for others with an external pouch as my biggest issue is how to shower every day. I find that my appliance gets loose if I shower with it on although drying it with a hair dryer hasn’t been an issue. I can’t afford to change my appliance every day so finding a way to shower and change the appliance every 4 days is my challenge. The only other thing about the external pouch for me is dressing. I purchased a stoma guard on-line but seldom dress up with a shirt tucked in. I tend to wear my shirts hanging out which hides my pouch. Youtube videos show all kinds of people, young and old that dress and say that no one can see their appliance but I find that I would have to have a concave belly to do that. I’m not too overweight but my belly is a bit convex these days and I find that tucking a shirt in and having my pouch tucked inside my pants is not comfortable and my appliance bulges out.

    #21738
    SJay
    Participant

    @RAC
    I have a neobladder and find that I normally wake up when it is time to go. I don’t use an alarm. I don’t know if this is typical for neobladders or not.

    #35682
    caltoons
    Participant

    Hi Stephen….I am facing the choice of neobladder vs external stoma config. Your case is very encouraging for me. I would like to message with you…you had invited anyone to PM you…how do I do that on this platform?

    Cheers…Calvin

    #35684
    rcfree
    Participant

    I too am in a dilemma regarding outside bag or neo however don’t see many post on the pros of an outside bag. I do see lots of posts on the benefits (and hardships of the neo). Is there a reason for this. Just curious.

    #35685
    Jack Moon
    Keymaster

    Here are 2 links to some discussions regarding the outside bag

    https://forums.bladdercancercanada.org/forums/search/ileal+conduit/

     

    https://forums.bladdercancercanada.org/forums/search/outside+bag/

    Jack

    • This reply was modified 5 years, 8 months ago by Jack Moon.
    • This reply was modified 5 years, 8 months ago by Jack Moon.
    • This reply was modified 5 years, 8 months ago by Jack Moon.
    #35687
    Jack Moon
    Keymaster

    Calvin, to send a message to Stephen, just scroll up to Sjay’s post, under his screen name click the send message button.

    Jack

    Forum Moderator

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