Sister having RC, please help

Thank you so much. In all the reading I have been doing I have been thinking she should have the Indiana instead of the neo. I only say this because of her active lifestyle and it seems like you have more control. I also hear that the neo can be wonderful and, when it works, it is most like what you are used to. I just feel, like you do, that it would be much easier for her to cath where she could see what she was doing. The doctors have really scared her today with all the things that can go wrong. They told her it can even ruin her kidneys! I told her they are just listing every possible outcome to protect themselves. Anyway, thanks so much for your help. Love, Barbara

What a doll you are. Thank you so much for the information. I have passed it on to my sister. Thanks for being there for me and her. Love, Barbara

Thank you so much for your kind quick response. It came at a perfect time as she is seeing her doctor today and I read her your note. Thanks again, Barbara

Hi Barb,

Sorry to hear your sister is facing this cancer. There are many women here who have faced the RC and diversion choice and will gladly share their personal experience to help one another.
I had RC and neobladder in March of 2007 - 19 months ago. Like Webbs, I experienced incontinence during the chemo. Once the chemo ended I gained continence. By the time I hit the one year mark - I became hypercontinent. So I have to selfcath 1-2 times a day. I do not reuse catheters but I still have had more than a few infections. Without the old feeling of burning the infection tends to get pretty far before it gets treated which is frustrating.
Given a chance to go back, I think I would have been happier with the Indiana pouch for a few reasons...the biggest one is that you can see where you are cathing. I also have to get up several times a night to void with the neo. We doo get to have a preference, but sometimes they still have to perform another diversion based on what they find and how it goes in surgery.
I had cervical cancer at 18, breast cancer in 2000, bladder cancer in 2007 and now have low grade bone cancer in my left arm...I am 43. It is discouraging to face so much and I wish your sister the very best in this next battle. God Bless, Holly

Barbara...glad you figured out how to get to the forum.
Here's a link from the Cleveland Clinic on Urinary Diversions
my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx

That being researched i have to tell you my reasons for choosing the Indiana Pouch with a navel stoma. I also was very active and about the same age as your sister. I researched and thought long and hard about this diversion...of course i wanted something that resembled what i had but the more research i did on the Neobladder and Women...Women being the key word here...i found that it doesn't always go as planned. We have a much shorter urethra and most women will have hypocontinence or hypercontinence...more UTI's....its all in the stats...plus if i had to catherize i sure didn't want to do it where i couldn't see it and for me personally in an area extremely sensitive. I couldn't even stand the caths put in after TURBS...so it became a no-brainer for me to choose the Indiana. I can tell you once i tamed the beast i only have to cath 4 times a day...i can sleep through the night 6 to 8 hours and no leakage. And i have never had a UTI in 5 l/2 yrs. I also had surgery by one of the top surgeons in bladder cancer. Numbers of surgeries can make a difference in outcome..you don't want someone who only does a couple of these a year. The average Cancer Center or University center or Urological Center will perform 60 to 90 and on up a year.
Your sister sounds like a real fighter to me. I'm hoping Holly jumps in here to respond as she has also fought many different cancers including bladder.
This is a very specialized field. If i can help any further please pm me
Pat

Barbra,
I am 39 and had a neo-bladder on May 22, 2008. As a female you will here pro's and con's to the neo bladder. Most people say to give it a year so I have not lived with my neo for a year yet. Four months out I am not fully continent but this may be do to chemo therapy. Chemo tends to upset everything. Women have a shorter urethra so tend to have a harder time becoming continent. It does happen though. Some women become hypercontinent and have to self catheterize. I do know it is a learning curve and you can achieve continence and hope to as soon as I am done with chemo.

It sounds like your sister is a real survivor. Let her know that I am highly active coaching 3 times a week. Well sometimes I can't coach right now but that is do to the chemo. Whatever diversion she chooses she will still be able to be active. It is just a matter of figuring out what works best for you.

Others will chime in and give you more insight. I wish I could be of more help. Keeping you in my thoughts.

Webs