I peruse the Mayo Clinic Connect Prostate Cancer Support Group Daily. One gentleman there is frustrated that his doctor won’t tell him what is going to happen to him, now that they have a path report showing margins no clear, some Gleason score 5 cells, and an intial post-op PSA of <0.05. Here’s what I said in response:
My path report showed 4+3 with no mention of Gleason 5 cells. Lymph nodes were negative. There was an area where the margins were not clear. But, the surgeon said he felt the tissue was “sticky” (whatever that means) there, and he took a little extra tissue from the sidewall in that same area where the prostate had been removed. All of that extra prostatic tissue was negative. I also had seminal vessel invasion. My 6 week, 3 & 6 month PSA were all less than 0.02 (I’m having my 9 month PSA next week.)
I did a little research and found several studies which predicted a lifetime risk of biochemical recurrence of 10-15% in my particular situation. The problem with such predictions is, for any individual, the end result is either 0 or 100%. And there is no way to know in advance which of those buckets you will fall into. As they say in betting circles, “That’s why they play the game!” Most doctors know better than to say, “This is what will happen to you.” Rather, they prefer to say, “here is what we will do to follow you”. It’s usually an algorithm which, in our case, starts with the PSA. Since there are endless permutations of how the PSA might evolve, again, a doctor will not tell you the full course of what might happen if your PSA starts to rise. There are so many “it depends” branching possibilities that it ends up being both confusing and scary.
So we are left not knowing what the future will hold for us as individuals. In that uncertainty, we need a physician who understands our fear and concern, and can provide assurance, that, no matter what the course ends up being, there is a plausible route through the diagnostic path to a treatment plan. It sounds like you are not yet getting that from your doctor, and that can be frustrating.
For me, I have a low-level anxiety that, someday my PSA might start rising. I also have a confidence that my medical team (I’m with Kaiser) has a lot of experience with many prostate cancer patients, and will provide whatever future evaluation indicates I need.