Scanxiety is a real thing. It’s the anxiety a cancer patient feels right before having scans and then while waiting for the results. We often say that we live from scan to scan. The good ones anyway.
I found that since my diagnosis was bad—my numbers were so incredibly elevated (bad) and my cancer was of such high volume (also bad)—that for the first nine months there was nowhere else to go but down. That is every lab showed massively improved numbers while my scans stayed stable. I’d heard of scanxiety but I wasn’t experiencing it. Every visit brought good news so I actually looked forward to them.
Let me tell you how that first nine months went. As you know (if you read my first post), I was diagnosed with de novo stage 4 metastatic prostate cancer. High volume meant I would start out of the gate with chemo.
First there was my PSA (Prostate-Specific Antigen). I’m going to oversimplify this a bit for clarity, but in general, anything more than a 4.0 is considered elevated. Mine was 5,306–a number I’ll never forget. That’s above and beyond elevated.
Then my Alkaline phosphatase (ALP or ALK P) was over 500 (normal range can vary, 44-147 is typical), also incredibly elevated. Not specifically related to my prostate, but an indicator that there was activity in my bones or liver. My scans would show it was metastases in my bones. Innumerable mets (metastases) in my spine and ribs primarily, plus mets scattered throughout both humerus bones, both femur bones, and my pelvis.
From November 2017 to February 2018 I had chemotherapy (docetaxel) every three weeks and a Lupron shot for life every three months. This treatment is known as ADT or androgen deprivation therapy, which is often called hormone therapy. Unfortunately the Lupron quit working and around July 2018 I experienced my PSA going back up for the first time. After nine months of great results with my PSA going from 5,306 down to 22, I just got spoiled with good news. My scans stayed stable throughout that time period as well, so my scans were good. Yeah, my mets shrinking or melting away would have been great, but this is incurable cancer and stable is good.
Despite having castrate level of testosterone (thanks to the Lupron), my PSA was going up. This is known as castrate resistant prostate cancer. So it was time for a second line treatment and I went on a clinical trial. So from November 2018 to February 2019 I took another chemo (cabazitaxel/Jevtana) along with an oral med called abiraterone acetate (Zytiga) that I will take until it quits working based on bone scans. This brought my PSA way down and very rapidly to boot. My PSA was under 1.0 after just a few treatments. Not long after my PSA was around 0.1.
But now scans meant a whole new important thing now. My PSA could go up but as long as scans remained stable, I was considered good according to the trial.
I can now say my scans come with a big dose of scanxiety. I get scans every 12 weeks and I get labs every six weeks. And as I’ve been on abiraterone a little bit longer than average time these meds typically work, each scan comes with a little more scanxiety each session. Worrying doesn’t help things at all, but it’s something that’s difficult not to worry about. My last labs in June showed a rise in both my PSA and my ALP, but we won’t know if it’s cause for concern or not until I have scans later this month.
I can’t wait to get my scans and see what’s going on, if anything. But I won’t lie. There will be a great deal of scanxiety next time around.