I was diagnosed with urachul carcinoma back in January of this year. I'l like to talk with someone else that has this.
Hi - My name is Diana and my husband Scott was diagnosed a little over a month ago with Urachal carcinoma adenocarcinoma - as a matter of fact he had surgery to remove the tumor yesterday.
How are you doing? Are you as frustrated as I am with the lack of information (let alone positive information) out there?
You were diagnosed in January, what's taken place since then?
I'd be happy to talk to someone else about all of this - it's so rare (the stat I saw was 1 in 5 million), but it would be nice to talk with someone else who can truly understand what you're going through.
Please feel free to reply - I don't know how much time I'll get at the PC, but I'll try.
Take care - hope to talk soon.
Diana and Scott, sorry I haven't been on the website in a while. I wasn't getting any responses. I had a partial cystectomy in Feb of 2002. Everything went well. I did one cycle of chemo and dropped out. Long story. My surgery was done at Chritst Hospital in Oak Lawn IL. I have been to the University of Chicago, Northwestern, and Sloan Kettering in New York. It gets scarry when you know more than the doctors. It has been 18 months since surgery, and I have done well to date. However, my last check up (last week) a bump is now appearing in my bladder. I had a CT scan on Sunday. I am now awaiting the results. If you need to talk you can e-mail me at firstname.lastname@example.org. I hope Scott is doing well. It was about this same time period where I was feeling good again.