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.)
12 thoughts on “Day 2,717 – The Discussion”
This wild roller coaster is so hard to manage. Just when you think you have a handle on it, you find out you know very little. A little bit of hope here. A disappointment there. A step forward here. Two steps back there. So far the damage to my mind is much more than the damage to my body. Wishing you the strength to chart your way through this with minimal damage. Go take a photo!
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Thanks, Phil. I couldn’t agree more regarding the mental health aspects of this disease. The VA Medical Center is in La Jolla and I did take a stroll on the beach after the appointment at Torrey Pines State Natural Reserve. It was needed. Should have brought the camera.
Hi Dan, Just be your positive self.
Theory – if it was returning cancel wouldn’t the numbers be higher. Pre my cancer I was running 2.4 as a 60yo (normal), hit 5.4 in January 2016 as a 61 yo (in an annual check) and 5.8 2 months later as a 62 yo. My prostate and some lymph nodes were removed with full open op in June 2016 and my PSA has been undetectable ever since, on 6 monthly checks, giving me that all clear for a 2 month holiday to the Good Old USA on 24th May and home to Australia on 17th July. My last (hopefully) specialist check is October. If I’m undetectable again my urologist is handing me back to my GP with annual checks. I’m sending good and positive thoughts for you. Go take some photos……
Thanks, Ray! That’s great news for you. Let’s hope that trend continues for a very long time.
If your two-month foray into the U.S. lands you anywhere near San Diego let me know. There’s over 100 craft breweries in this town, if that’s your thing. 🙂
Dan, your Doctor told you pretty much what mine told me. It could be benign prostate tissue and as long as it’s rising slowly, he wouldn’t do anything until .2, and then he would only do imaging. If the imaging showed nothing he’d even wait until .4 or .5. (Not sure I’d be willing to do that last thing).
I would repeat my reco to look into the Decipher test. It would help inform your decision. It could show that you are at higher risk for recurrence than your Gleason score indicates, which might lead you to acting sooner, or it could confirm that you are at low risk for recurrence, which could lead you to being more comfortable with waiting.
Medicare covered it for me.
Hang in there. We both know, this disease might piss us off on occasion, but it’s highly likely that it’s not gonna kill us
Thanks, Ken. The Decipher question is one that I sadly left off my list (inadvertently). I may contact my surgeon’s office back in Cincinnati and see if they even have the tissue sample yet.
Otherwise, the urologist was in no hurry to act, and I’m okay with continuing to monitor every four months—it’s what I’ve been planning on for a while.
On balance sounds like a good, if frustrating, meeting. I’d have a hard time agreeing to get irradiated if I didn’t know where the cancer was, but that’s just me. The benign prostate tissue sounds like quite a reasonable possibility.
Yes, I’m 100% in agreement with you on the don’t zap me unless you know where it is with a high degree of confidence. The introduction of the benign tissue possibility just makes making that decision all the more difficult.
We’ll see what the radiation oncologist says when I meet him/her.
All the best.
Dan, The situation just sucks. While it seems to me, sans certainty, that you are worried about a scenario that just isn’t reality, there is nothing that anyone can say to take away the uncertainty you have to deal with on a daily basis. That sucks. All I can say is that considering your bullet points collectively I’m going with positive thoughts. In the meantime, as you bob around in the sea of uncertainty, find comfort in that there are no sharks in sight. As always I’m sorry that you have to deal with this.
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Thanks, Steve. You’re right about the sucky part, that’s for sure.