Hello Friends,
On Thursday I had my first follow up CAT scan since my RC on 3/18/09 and no cancer was seen! They saw a spot on my lung and now I'm scheduled for a PET scan. I'm trying not to worry or give that any power... The discussion I had with my surgeon was in regard to the fact my neobladder doesn't work and I have always had to self-cath. He states this is uncommon and feels it should be working. I've shared this with you folks in the past and remain grateful for your responses and support. Because I loathe self-cathing and how it limits my 'freedom' he has offered as a suggestion either the bag, or a surgery which a potentially kinked urethra is straightened out. This procedure is done via the scrotum. He says there's no guarantee it will allow me the ability to pee on my own. Is anyone aware of this type of surgery? Any success/lack of? I got a staph post-surgery and lost 40 lbs. I am thus not a fan of any more surgeries. The mere thought of it scares the heck out of me. I've been told by many of you that self-cathing gets easier and that I will get to that point, too. I'm not there yet... I appreciate your feedback.
Thanks in advance! Marty
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Self-Cathing with the Neobladder
- By martyofmass
- Posted November 8, 2009 at 6:15 pm · 4 replies
- In Life after radical cystectomy
- Shared with the public
Explore topics in this discussion:
4 replies
- Oldest first
- Newest first
- By RickB
- Posted November 9, 2009 at 8:13 pm
- Report post
Marty,
Congrats on the CT scan, and best of luck with the PET.
I wish one of us had an answer to your questions and perhaps someone will respond soon. I am not familiar with the surgery you describe. I do know that the position in which you urinate can make a difference, and the experience is different from those with original equipment bladders.
I would suggest getting a second opinion from a surgeon who does a lot of neobladders. Your situation is not typical, and you can confirm that you are on the right path choosing from the options provided. You may also get some advice on self-cathing to at least get you through this in the short run.
Rick
- By Crazyhorse2
- Posted November 9, 2009 at 8:32 pm
- Report post
Marty I had an RC back in June of 07 but b4 that they saw a spot on my lung chest x-ray and here it was just a reflection of light on the damn x-ray film so hang in there. CrazYhorse
- By birdman
- Posted November 10, 2009 at 3:01 pm
- Report post
Marty, my Neo isnt working either.My Uro checked the pressure and said it looked good for a Neo. He mentioned going in and stretching something to see if that will work. I use the Red bard #18 catheters or the Tan Bard with silicone coated and they work fine with no pain, but I did try to use a clear hard one and it hurt too bad so I only use the rubber ones by bard.If I figure out whats wrong I will post,may wait till after my daughters wedding in Antigua in Jan. I dont want any continence problems to start back.
- By martyofmass
- Posted November 14, 2009 at 10:32 am
- Report post
Thanks Birdman and Crazyhorse2,
I appreciate your support and suggestions! Birdman, I prefer the Bard cath's as well, but until I hear that my insurance will cover them, I'm afraid I have to 'stick' with the uncomfortable and less expensive/clear coloplasts...
Thanks and best to you.
Marty
Add to the discussion