I’m a mechanical/industrial engineer working in the aerospace industry, specializing in fuel systems safety enhancement (lots of statistics) with too much time on my hands. For 3-4 months I became literally obsessed with my diagnosis and prognosis. As an engineer I was trained to analyze a practical problem, figure out all the variables, which of these variables could be controlled and come up with a course of action that would produce the best solution…
It really bothered me that I kept getting wishy washy answers from doctors about chances and prognosis. Geeze, they have been treating bladder cancer for a hundred years, they have been using BCG immunotherapy for 20-30 years, the hospitals keep records why can’t the doctor’s just come out and tell me that based on 5,000 cases similar to yours you have a 75% chance of a keeping your bladder. Where are the comprehensive medical databases? What I am finding out is there are none, or they are on much smaller scales and there are too many variables.
I guess trying to make sense of all this helps me deal with my disease. Some choose to put their energies into alternative treatments or prayer.. I just like cold hard science and statistics. I want to be able to track my progress..i.e. if I have a 50% lifetime chance of tumor reccurance and 25% of that risk is in the first year, I want to know that 365 days after my diagnosis that my chance of lifetime recurrence is now cut in half at 25%. Some may think thats a crazy way to go through life, it probably is, but its how I deal.
Trust me Lou, I worry about the different types of urinary diversions as well.. Your urinary diversion will in all likelyhood last you the rest of your life, for someone who is 35 this is probably not the case. There is only so much intestinal material you can afford to lose to make one neobladder, let alone a second one. But urinary diversions are not a bridge I need to cross just yet, so I am going to do what I can (control the variables i can) to never cross that bridge if possible.
My secret to remembering/understanding so much is interest and reading, reading, reading… books, webpages, etc.. Focusing all my attention at this disease when I should be working or playing with my kids/family. I really have never been so interested in a subject before in my life, for obvious reasons.
I do like to help people understand, this disease has made me much more compassionate than I was previously. If I can help someone get a better grip on whats happening I’ll do it. I just remember the panic and confusion I had when I was first diagnosed.
Oh, and by the way, I think my doctors cringe when they have to talk with me. lou, 2+ years after neobladder surgury and your cancer free is a good sign 🙂