Welcome to the site. Sorry to hear your story though. It is a familiar story for us.
First of all. Once the enormous surprise has stopped hitting you, it is time to take a few DEEP Breaths. You are going to survive this. With the help of your Dr. and your own powerful will, You will put this behind you.
Mike has posted a chart on this site of the "path of Bladder cancer Care." It will help you follow along the course of treatment. Find this chart. It will help you plan ahead and chart your progress.
This site is filled with people who have survived bladder cancer in its many forms. We have come out the other side as "super determined" survivors who are bent on helping you too. Their stories and advice are often serious and unforgiving. We can also be a cheer squad for you when you need that. (Kind of like a 5 hour energy drink) We can even be humorous about all of this.
Please keep us in you loop..... once you have us on your side we can be kind of relentless in our efforts to get you cancer free!
Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.
08/08/08...RC neo bladder
New Man! [/size]
I understand your fears. My presenting symptoms wih bladder cancer were UTI's, frequency and urgency. I never had any visible blood in my urine. As a result it took me 6 months to get a diagnosis. I too had a high grade, very large tunor.
But the good news is that I did not have any mets. I had chemotherapy and radical cystectomy. It is now 2 years plus and I am still disease free!
My thought are with you that your outcome will be as good as mine.
Welcome to our group, Eileen...although I am sorry that you found us the way you did! Some advice. Calm down a bit (I know, it is hard) and take a deep breath. Yes, there is some urgency to get your situation under control, but this means to get it done in a few weeks, not months. A week spent getting yourself to the right bladder cancer center is a week well spent. I am sure that Pat has the names of some really good people in the NYC area. You do want someone who deals with a lot of bladder cancer...not just prostate.
I KNOW how you are feeling. My diagnosis hit me out of the blue and I was STUNNED. Like you, I had a long series of "UTI's" and NEVER had any blood in my urine, even after diagnosis. Have finally come to grips with this disease, with a lot of help from the people on this forum, and life looks good. I had CIS, have just finished my BCG treatments. So far, so good. I am well aware that this can come back, and know that I can face it if it does.
Best of luck to you, and, if you wish, we will be with you all the way.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society