Posted 11/10/2015 10:58 PM (GMT 0)
Well, 'm now 8 years from my first PSA red flag (4.1), and have gone through surgery (2009) and radiation (2012), and am getting ready for yet another 6 month PSA this Friday, with early signs that it may be rising (from .014 to .024 6 months ago). I've found that PSA anxiety never goes away, and every time I'm close to a PSA it's hard to forget the PC, so I go through posts on this great board and do a bit of research on the latest and greatest. As I go back through my experience, there are a few things I remember, that have stuck with me. Many other things that I thought were important at the time drifted away, so with 8 years of looking back these are the things that I remember the most:
- The biopsy, if done right with an anesthetic shot ahead of it, is a bit uncomfortable but painless. This is important, because I let myself be scared away from doing a biopsy when I should have had one, two years earlier, out of fear of the pain. Those were two wasted years in which I might have achieved a cure.
- If there is any question in your mind about surgical pathology reports, and you can't get a good answer, send them off for a second opinion. Mine were confusing, and even the radiation oncologist couldn't figure out whether or not I had extracapsular extension.
- After surgery the only lasting bad memory was the weird feeling associated with a catherer. The only thing that helped was sleeping in an easy chair with the catherer tube at the same level all night, otherwise any little movement gave me the heebie jeebies.
- I wish I had never gotten an ultrasensitive PSA. Yes, my PSA went up after surgery, and it's probably going up again. But until it hits .1 there is nothing to be done, so the ultrasensitive just makes for worry. And once you get one, it's hard not to keep getting them because you'll be worried about the last reading having gone up.
- If you get SRT, make sure to drink a lot of water before each treatment even if it feels uncomfortable. For me and others it really lessens the SE, I've had none.
- Finally, this is a weird disease that follows no pattern. I've now seen guys with very bad numbers that hang in there and do very well, and guys with good numbers that progress quickly. So even if your numbers look bad, don't give up, they are just numbers, and the disease is individual and will follow whatever path it follows.
Those are the things that have stuck in my mind so, in some sense, they were the most important in my case. I hope that by sharing them they may help those coming behind although, as I said, this disease is very individualized.