Newly diagnosed Invasive..Need Support

Andy. where in MI are you? I spent a lot of time over the years going to the company offioe located in Romulous and then in Plymouth. I have a very god friend who lives in Brighton.

I want to say thank you,I am not sorry that I was able to find all of you wonderful and helpful friends. It is extreemly comforting to know I am not alone and I can learn from all of your experiences. I am looking forward to the time when I will be able to do the same for others.

Aside from what I think are the standard questions is there anything I should make certain to ask?

I have had the catheter before and it is no picnic but after a while you forget it is there. However the most I had it was about 5 days,4 weeks is quite different I am sure. was there a lot of weight loss? I certainly can stnd to lose a few LBS. Did you have to change your diet? I am ok with fruits & fish but not a veggie fan.

I am going to see the doc tomorrow morning and find out his plan. My URO who referred me to him said he is very good and takes as much time as needed to get things as they should be, compassionate was another description used. That is a a good thing.

I appreciate all of your help and yes I wsould like to talk with you and get more insight of what lies ahead. Let me know how to exchange numbers.
I will keep you posted after doc meeting tomorrow. I hope your recovery is easy and fast.
rgds
Arthur

Arthur..i'm familiar with Dr. Kazlowski more for prostate cancer and his work with metastatic cancer...not so much for bladder cancer cystectomy and reconstruction. I'm sure he's a great doctor but i would ask him how many reconstructions he does a year and the types he performs. Also ask about nerve sparing.
Dr. Steinberg at U of Chicago easily performs 70 plus a year and is one of the best known in the field of bladder cancer in particular.
I hate that i'm playing devils advocate here...just want you to ask the right questions and get the surgery you deserve. Its possible he pairs up with another surgeon.
I was born on the south side of chicago a long time agoooo..and lived in Park Ridge, Park Forest, Homewood, and when i was in my 20's lived up in Dundee. I loved Chicago..if my mother only knew how many times i snuck on the L and went downtown by myself...i would love to go to the natural history museum. Great city..........Pat

Hi Arthur -

Glad you found this site, but sorry you have to be here. I'm 3 weeks out from RC and neo bladder and am doing good. I'm still a little sore and get tired easy, but every day is better and I'm so glad I had the surgery. The people on this site are great and will support you all the way through the process, they have tons of experience and are very compassionate. It sounds like you have a good surgical team, but don't be afraid to ask the doc how many of these procedures he does. I've learned you have to be your own best advocate, ask the tough questions. You should plan on about a week in the hospital give or take a day or 2. Plan on going home with a catheter, not the greatest thing but perfectly manageable - usually has to stay in about 4 weeks. The hardest part for me was getting my digestive system back to normal. Plan on lots of small meals throughout the day. I'm pretty much back to my normal diet but am careful about quantity, I don't want to overdo it. Walk a lot after surgery - it really does make you feel better.

I'd be glad to talk if you wish (as will anyone else here), just let me know and we can deal with phone numbers. Best of luck - you're making a good choice!

Andy in Michigan

Pat
thank you, Where in Chicago are you from? I am in the NW burbs.
I am actually going to Northwestern with Dr James Kozlowski and his team. He also is a Professor at their medical school. Hopefully he listens to what he teaches then I should be ok

I am actually meeting with him tomorrow morning to review when,what,why etc. Except for the obvious questions I have, is there anything specific I should ask that he may or may not offer if I do not?

thanks
Arthur

Hi Arthur.....Chicago my hometown!!
Gary David Steinberg a top uro at U of Chicago...might be where you are going?
www.uchospitals.edu/physicians/physician.html?id=5617
Recovery is a variable process and one never knows what the variables will be...i do know one is your surgeon and your team.
Glad you have a great support system in your daughter. We'll support her too!!
Pat

Patr,
I am located in Chicago and will be having the surgery in a University Hospital by a Urological Oncologist who has come highly reccomended. He is the second opinion Dr as well.

The first URO did several outpatient surgeries which shoed the cancer. This was followed by several BCG treatments and another " outpatient proceedure" which now shows the invasion into the muscle and not the talk of surgery & Neobladder.

Depending who you talk with ( outside of this forum) the stories range from long haul to recovery to very painful process, etc. However all finally lead to a happy ending with success.

I am happy to have been pointed to this site by my daughter who is one one my biggest supporters and advocates I am happy to say.
Thank you to all
rgds
Arthur