Gathering information for the decision time

Not sure why I or anyone else would want to railroad you into anything. Make your own decision. But I can tell you this, it's going to be tough to make it through any cancer with such a negative attitude.
best of luck.
Duke

Groucho

Yes! We do tend to be a positive lot don't we! But we are still very much realists.
This is Major Surgery and there are indeed risks and everything does not always turn out perfect. Even my positive result has had some negative results. But I always counter them with the fact that I am still here!

You can minimize the negatives by choosing a Skilled surgeon who has done A LOT of these procedures..... like hundreds and hundreds. Cynthia and Patricia are GREAT refrences on where to go in almost every geographic area in the U.S.

I will not say that my Surgeon was the warm and fuzzy kind of guy. He simply walked into the room .... opened up a folder... and said "So, You have cancer."
After that sank in he continued with the steps he was going to take..... Tests, Turb, Second Turb, BCG treatments, Radical Cystectomy, Chemo, and if all of this fails.....Hospice. (I didn't hear most of the first stuff, but I did hear the "Hospice" Stuff!)

I didn't base my choices on the warm fuzzy feeling my surgeon gave me; I based it on his ability and number of successful surgeries. I also made it clear to him that I was a person worth saving (I gave him a life story to make him view me as a person rather than a number)

Good Luck! But Youe NEED To stay Positive! A good attitude will help see you through the very trying times. It will be easy to focus on the negatives.... Very easy indeed.
So Don't Do It!

Find the Best Surgeon. Be realistic. Stay Positive! Get Past this cancer.... Get on with this thing called Life.

George

I certainly hope you don't think we're railroading you into anything. Those of us who are still here because we got our bladders out before the cancer could kill us tend to be positive about our experiences even if we have some down sides. The dead folks don't talk much and I'm not sure if they have their own web site or not but I haven't seen it.

The guy who had everything go wrong insisted he was going to a great doctor even though there were a number of folks pointing him elsewhere. That was both online here and offline behind the scenes.

Not sure what you're looking for Groucho. There is a reason that bladder removal is the gold standard of treatment for muscle invasive bladder cancer. It saves more lives than any other method of treatment. You can look up the stats.

If your question is that you just don't think bladder replacement is a good idea but bladder removal is, well that's fine. Plenty of people have ostomy bags and they seem fine with them. Others have body image issues with the bags and stomas. It's a personal choice.

Mike

dukel wrote:
This is what bothers me, this site is so overwhelmingly positive on replacement bladders. I have seen many one sided, biased forums on subjects I really know enough about to know the general consensus is nonsense.

Am I to trust a urologist' recommendations that did nothing about an older, white male with blood in his urine? I really think she feels replacement bladders work so well there is no reason to be diligent about early detection of bladder cancer. She hasn't discussed alternatives at all or even a second opinion of the pathology report.

As for doctor Koch, as I have mentioned, to the man with a hammer, everything looks like a nail.

I feel I am being railroaded into a major surgery that has frequent complications on flimsy evidence of need.

I am a firm believer that the outcome from neo surgery depends on the Doctor doing the surgery. I am at two years with my neo.and my life is no different, other then a very small amount of leaking at night. If your Dr. is as good as mine you will need no help from pills for sex. I urinate the same as before. Let me also add a disclaimer. Over the two years i been following the site, we had one gentleman that everything went wrong, and he stopped posting. Nothing is !00% here. That's why i say it's depends on the Dr. We have all had to make that tough
decision.
Best wishes, Duke

Yes, he did talk about nerve sparing surgery. but was very discouraging. Perhaps it was excess CYA. If things go better than suggested, the patient is happy. Worse? They sue.