I hate this flippin’ disease.
My discussion with my urologist went pretty much exactly as I suspected it would, but with a few twists to screw with my mind a little. One of those little twists, however, happened much earlier than the meeting.
This morning as I was shaving, there was this strong sense of fear that hit me, tying my stomach in knots. That was completely unexpected and unfounded because I had a good idea of what was going to happen with the doctor. Even so, it was something that took control and definitely set my mood for the day.
When the doctor entered the exam room, I told him about my propensity to just verbally vomit all over the doctors before they even had a chance to explain their interpretation of my results. I shut up and let him talk away (with my battery of questions at the ready on my lap).
Pretty much everything that he said were things that I already knew:
- The increasing PSA is a concern, but the slow rate of increase is a good thing.
- That salvage radiotherapy would be the likely next step.
- Given my pathology and history, it’s likely that the cancer is still in the prostate fossa.
- Starting salvage radiotherapy earlier rather than later has typically shown to have better outcomes.
- We have no guarantee of knowing where the cancer is at, so the radiotherapy may be ineffective.
- Current imaging technologies aren’t good enough to detect the cancer’s location.
- There’s no cut-and-dry set of numbers that would dictate specific actions.
The one kicker that knocked me for a loop was something that he said as we were reviewing my PSA tracking chart (I had to bring a copy of that, of course). He did mention the possibility that what we’re tracking may actually be benign prostatic tissue left behind that’s causing the PSA to rise. His reasoning was the fact that it took 54 months for the PSA to become detectable again and its slow rise ever since. He suspected that if the cancer was returning, the PSA would be climbing more rapidly. That, of course, would be great news. He didn’t assign a probability to his theory being right, however.
He did ask if I would be open to a referral to a radiation oncologist to at least begin the discussion and get educated. I said that, if he hadn’t suggested it, I was going to request it, so, yes, I was open to the referral. I don’t have an appointment on the calendar for that yet—they should call in the next few days.
I did mention the PSMA imaging trial that’s going on at UCLA and he was supportive of me looking into it. He cautioned, though that it is a trial and there’s no way to know yet how effective it may be. To be honest, it’s been a while since I looked at the trial page and I’m not sure that I would qualify to participate if it’s still ongoing. Something to dig into.
Lastly, he said there’s no need for urgent action at the moment. We’ll continue the four-month PSA test cycle for now. That will have me in the lab the first week of August.
When you get your care through the Veterans Administration (VA), as I do, you rarely see the same doctor twice. I mentioned that to this urologist and commented that, in a way, it’s a good thing because I’m getting multiple opinions and perspectives. He was taken aback by that comment, saying, “That’s a charitable view. I usually hear the opposite.”
He’s the second doctor who’s mentioned the possibility of this being nothing more than benign prostate tissue left behind that’s causing the PSA to return and rise. Perhaps I need to put a little more stock in that theory. But after spending two years wrapping my head around the notion that the cancer is returning—a mentally and emotionally exhausting exercise—when you hear something like this, it really screws with your mind. Or at least it does mine. It’s one more variable added to an ocean of uncertainty when you’re desperately seeking solid land.
The good thing is that I have time, and time may bring a little more clarity on which to base a decision at some point in the future. In the meantime, I’ll just don my kapok life preserver and bob around in that ocean of uncertainty reflecting on how much I hate this flippin’ disease. (Yes, I’m dating myself with the kapok reference.)
This post originally appeared on Dan’s Journey through Prostate Cancer. It is republished with permission.