tinytown7 a question of diversions

Tinytown7

Welcome! Sorry you have to battle cancer but if so, you have come to a forum which has lots of info., encouragement, support and best wishes to help you negotiate your way through the cancer experience.

I am 58 and got an Indiana Pouch two years ago...fortunate as I had an excellent medical team and this diversion has been great for me. There aren't many guys who choose the Indy but those who have, seemed to be happy with it. You might want to check out my website that gives details about my experience with the Indy Pouch, and also I have a drop down box that offers information on Rick's experience with the bag. He too, is doing very well with his diversion. Unfortunately, I don't have any info. on the neo.

Anyway, you just have to go to my signature box on lower left to find the link. I hope you find some of the info. informative and encouraging.

TinyTown7,

Glad you found us. Feel free to ask more questions directly.

My invasive bladder cancer was diagnosed in Sept 08 and my RC and neobladder was Oct 9th, 2008. Since I previously had non-invasive and knew there was a chance it could come back, I spent A LOT of time researching different options.

My first choice was neobladder, second choice Indiana pouch, and last choice ileal conduit.

I wanted as close to normal as possible. You never know for sure what you will get until the surgery starts and they see what they have to work with.

I can tell you that I asked people on this forum and for the most part, people are happy with whatever diversion they got. I think part of that is everyone thinks it will be worse than it really is.

One thing is very important about this surgery. I would venture to say it is the MOST important thing about this surgery. Get it done at a highly reputed "bladder cancer" center. You don't want a local urologist or general cancer center. You want a surgeon that does this day in and day out. The experience and skill of the surgeon is critical to fewer complications, higher success rates, and lower recurrences. Sounds pretty important, doesn't it?

Be careful of strip mall cancer centers or generalists. It's not just the surgeon, it is also the nursing care post-op so you want a whole team that deals with RC and various diversionary techniques on a daily basis. there is a reason that people from all over the world go to these top centers.


I wish you the best of luck in your surgery and please do keep us informed of your progress and ask any follow up questions you may have.

Mike

Hello tinytown7,

Welcome to the forum and sorry to read of your diagnosis.

I was diagnosed with invasive bladder cancer in July 2007 and my general urologist in my local small town hospital recommended RC.

After researching on many web sites it became obvious that for such radical surgery a second opinion was necessary.

I found a Urology specialist in another city a few hours away from were I live in Holland and set up an appointment within a week. The diagnosis was the same which I had expected although I felt secure in the fact that this hospital and Urology team performed far more of these surgeries.

Survival outcomes do vary because of the skill factors of the hospital surgeons and after care nursing.

My advice to you would be to seek out a second opinion with a hospital that specializes in bladder cancer. Pat has recommended specialists in your area; please get on the phone today and make an appointment.

I can not express enough that choosing a specialist will improve your survival chances. My original urologist was surprised to find out later that my surgeon had removed 29 lymph nodes as he only removed up to an average of ten. Well I am so please he did as 17 of them were positive. So I would still have positive nodes inside of me if I had remained with my original Urologist.

Diversion option choosing I guess is the hardest decision before surgery because firstly you have a choice.

How do you choose the correct one for you?

For me it was a case of replacing the one I had for the nearest duplicate and I chose the neo bladder.

There is a wealth of information here from forum members on diversion options and positive and negatives of them all.

Tinytown7 you have a lot of decisions to make, I wish you well in the coming weeks. Have a look around the site and read the experiences from others on the forum section and please feel free to ask any questions and post in the invasive section for quick replies.

Kind Regards
Leigh

Hi Tinytown....glad you came over to the forum. Many guys will step in here to discuss diversions. But l sound like a broken record i know but you really need a qualified second opinion....Cancer Centers of America do not have lots of experience with bladder cancer and the surgery involved. You're in Michigan and there is an excellent physician who works with bladder cancer..Dr. Jason Gee
www.urology.wisc.edu/faculty/gee.shtml

The Cleveland Clinic another resource which sits on the border of Mich and is tops in urology....Dr. Stephen Campbell
my.clevelandclinic.org/staff_directory/7/Staff_6257.aspx
or Dr. Stephenson
my.clevelandclinic.org/staff_directory/7/Staff_6758.aspx
Pat