Hello Florida Neighbor..(Jim's wife)
Welcome to ABLCS. I am sorry you have to be here. I know you are scared and things are hitting you like a sledge hammer. It has been the same for us. Especially a few months ago when my husband was diagnosed with T1G3...and a 5.4 cm tumor in his bladder.
We both are health care professionals. But that did NOT help us one bit because like you said, when a very nasty cancer like bladder cancer hits your home....I think medical training can become your own worst enemy.
One day, my healthy husband went from golfing and carrying golf balls in his pockets...to hearing the news he was carrying a tumor in his bladder that was larger than a golf ball.
We, like yourself, hit the internet. I think that I myself must have spent 1000's of hours, everyday, all day long , researching everything I could find out about Bladder Cancer and its prognosis. It was not too long before I ended up here at ABLCS. I met some incredibly knowledgable people, who then directed me to some of the BEST information about BC, I could ever wish to locate.
Information that I recognized, if I were to follow, my husbands survival statistics would increase immensely.
One of the very FIRST and most IMPERATIVE steps that I learned we were going to have to take early on, was to locate the BEST and most TOP NOTCH surgeons and Cancer hospitals in Florida. That is, if my husband was to have the best outcome.
Being from the Tampa Bay area we began interviewing docs everywhere in Fla..including Moffit. Regretfully, the criteria that I had learned we MUST find in a surgeon,
and mostly a top cancer center hospital to help increase my husbands survival statistics....was NOT here in the state of Florida.
It was his LIFE and as we all know, there is not any margin of error when it comes to human life. My husband had to have the BEST. I wasn't going to settle for less, no matter the cost to us physically, emotionally or financially.
My husbands local uro was indeed a very competent and wonderful man, but not equipped to handle BC. He did my husbands first TURBT to remove the tumor and did a wonderful job getting it all. We sent my husbands slides to not only one, but to three pathology departments. Two were in the state of Fla, and one at MSK in NYC.
To our surprise..when his path report reached NYC, they found his cancer had been improperly staged by the pathology here in Fla. He had been overstaged here in Fla. This meant, a completely different protocol in his treatment plan.
This proved to us, we had to leave Fla for certain for his care.
As medical professionals, we knew what we were seeking in a major cancer hospital and in a renown surgeon. Fortunately, for us, we found our surgeon at Memorial Sloan Kettering in NYC.
My husband is scheduled for his radical cystectomy on August 20th. It is not easy to travel out of state...but we know we are in the right hands. I did not want to fool around here in Florida without having a major cancer hospital that deals with BLADDER CANCER, or a surgeon who did not do at the very least, 200 RC's a year.
I also wanted a "team of surgeons" with exactly the same expertise surrounding the surgeon who would be removing his bladder. Nothing like backup experts standing nearby should anything odd, or unexpected, go wrong. Needless to say, a big part of the sledge hammer was removed from my back once I knew we were in good hands.
I wish you and your husband the very best. If you would like to talk more about all of this, I'll be more than happy to provide you with my phone number.
In the meantime, I wish you and your husband all the very best,
Cheryl