Posted 2/23/2024 5:37 PM (GMT 0)
Hi all--
Just thought I'd pop in and give an update. I used to be very active on here--a moderator at one point as I recall.
I was diagnosed with Gleason 7 (3+4) in 2006 and immediately had a Da Vinci prostatectomy. My PSA dropped below 0.1 within a few months, but then started a rapid increase, and in early 2007 I underwent salvage radiation in the form of IMRT. That drove my PSA below 0.1 within several months and it has stayed there ever since. So apparently my recurrence was localized to the prostate bed and radiation cleared it out.
A few years ago my primary care doctor ordered a PSA as part of a physical, as normal, but this time he accidentally ordered an ultrasensitive one. For the first time, my PSA wasn't "less than". It was 0.02. I wasn't worried, but about a year later, a couple of things happened.
First, in 2021, my mitral valve sprung a leak, and I needed open heart surgery to replace it (I'm now part cow). When the surgeon ordered chest and abdominal CT scans to plan her approach, it turned out I had a lot of enlarged lymph nodes. My surgeon, not being a prostate cancer specialist, and knowing my history, ordered an ultrasensitive PSA, stat. It was 0.05, so an apparent doubling in a year, plus some.
But of course, my lymph nodes were not enlarged by prostate cancer. It turned out to be follicular lymphoma.
I had my heart valve replaced, and after recovering from that, started seeing a lymphoma specialist. I also remained worried about my PSA, so I went to a prostate specialist at Mayo, and they started following me with 90 day PSAs--the standard assay--which was *still* below 0.1. And so it remains today, years later. It should have passed the 0.1 mark by now if it indeed was doubling quickly.
I'm now getting a PSA 2x a year, but I think it's overkill. I like to stay on the radar of the prostate specialists at Mayo, just in case, so I'll keep getting checked. No DREs, of course, since I don't have a prostate, so I don't mind the checks.
Follicular lymphoma is an "indolent" (sleepy) cancer, considered incurable although there are some new treatments like CAR-T that *may* cure, but at a big cost both in dollars and in risk to the patient. It is highly treatable, but treatments do not extend overall survival, so "watch and wait" is the standard approach. I don't have any symptoms, my bloodwork is fine, and annual CT scans are showing minimal growth. But one day I'll probably need chemo/immunotherapy. Coincidentally, my wife also has been diagnosed with an indolent lymphoma, but a different kind (CLL/SLL). So we're both on watch and wait at Mayo.
I'm now almost positive PCa won't be the cause of my demise--more likely lymphoma along with treatment side effects, or something cardiac related. Or a crazy driver!
Anyway, good luck to all of you!
If I got any of my early stats wrong, my signature should show correct figures.
-G.