What a great daughter you are...obviously one who loves your dad a great deal and wants him around for many years to come. Keep the momentum going on all your research and questioning.
So much good advice you can get here at this website...but her is my two cents. When you ask the doctors how many of these procedures they have done, be certain to be specific....how many neo-bladders per year? or how many Indiana Pouches per year or how many Illiel Conduits per year. You want to make it absolutely clear what information you are wanting. They could easily say they have done 77 procedures a year and you "think" he is talking about neo-bladders when in fact, what he means is he has done 77 Illiel Conduits (that is the bag). SO in that case, he has experience with the bag but perhaps has never done a neo or maybe just a dozen or less...in which case, he doesn't have enough experience (in my opinion).
Also suggest you keep all your papers on this subject in a folder and get a small tape recorder for your appts. with the doctors...this is a subject that is close to your heart and emotions...he nor you will likely hear all the doctor(s) say during an appt....before hand, number down all the questions you will have and check them off as he responds...then go home and play back the recorder. I have been there an done that and it's very worthwhile. I am 58 and had my bladder removed nearly two years ago...I have an Indy Pouch, gone back to work and doing very well. I wish your father the very best. Hugs, Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Thank you all for your information and testimonies. My dad is still saying that he doesn't want the surgery, but doesn't mean I have stopped trying to inform him about it. I have forwarded all of the information I have received on here to him, hoping one day it will click.
Pat, I am calling the VA in Indy today to ask about the surgereons they use for this procedure, will let you know what I find out.
Thanks again everyone, have to stay strong and hope he will see this is his only option.
I would like to provide advice to your dad from a fellow Vet and a Bladder Cancer warrior.
I am 50 years old. I retired from the USAF after a full active duty career. I found out I had Bladder Cancer in March 2007 and had surgery in June 2007.
Time, diet, prayer and other non-intrusive intervention will not alone cure your cancer.
Bladder Cancer is an aggressive cancer. Since it is already in the muscle wall of your bladder, there is a high chance that it is in contact with your blood system. The longer a patient waits to get the appropriate treatment, the lower the survival rate is for the patient.
When I went in for my initial biopsy the doctors scraped off the cancer that was in my bladder. A month later before my surgery the doctor did another biopsy and he saw the cancer grew back to nearly the same amount. In some of us, the cancer is aggressive.
As a Vet, you have most likely gone through a lot of challenging situations. Treatment for bladder cancer is a mission that can be successful.
I had surgery to remove my bladder and had a new diversion in its place. I had chemotherapy for 12 weeks after recovering from the surgery. Both of those portions of treatments were brutal. But now after 20 months since surgery and 14 months since chemo, I am as active as I was before. The cure is worth going through the difficulty of the treatment.
Please talk to the doctors about their recommendations on treatment.
I had a radical cystectomy and chemo a year and a half ago after having the same symptons as your dad. I'm 60 and very fit and play tennis and golf every other day as well as I did before surgery. My local uro was very specfic..you need your bladder out! I had something like 9 tumors, stage 2-3 muscle invasive. Because I have insurance, I went to John's Hopkins to have the surgery, thinking this is my life, why not go to one of the best uro hospitals. Because my doctor specialized in neobladders and had done many of them, I went with a neobladder and am very glad every day that i did.Frankly, I pee less now that I used to. OTOh,a neobladder is a highly specialized operation, and if your doctor is not too experienced, I think I'd go for the external bag, it's much more common and recovery is faster and easier and there's less room for error. Life is still normal with the external bag as many on this board will testify. To re-state the obvious, even a little research shows the sobering survival rates even with surgery. All of us on the board were frightened and shocked with the diagnosis, but I just dug in and did the best i could with the resources around me.
Either way, Like everyone else is saying, he's got to do something. How to convince him is not easy. Sloan Kettering(sp) has a web site with a questionaire that shows life expectancy with various levels of bladder cancer. It's frightening, but maybe that's what he needs. If talking to survivors is what he needs, my wife and I love to counsel and tell people about our experiences and if you or he need to talk, we can be emailed or called on the phone anytime. We even spoke to one family from Ireland for 20 minutes. Who knows what that phone call cost. We have bc friends all over the country.
Mike and Eileen
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23