Posted 6/26/2023 9:54 PM (GMT 0)
Hi all!
I thought I'd drop in with an update. I used to post quite a bit on here a long time ago.
I had Gleason 3+4=7 cancer diagnosed in 2006 at the age of 43 and underwent a Da Vinci prostatectomy. Afterward, my PSA started rising rapidly and in 2007 I had salvage radiation in the form of IMRT. My PSA dropped below 0.1 and stayed there.
Fast forward to 2021: I'm getting older, and my mitral valve has gone floppy. It's severely regurgitant, so I sign up for open heart surgery to replace it. I find a surgeon at Mayo who can do it from the side through 4" incision rather than through the sternum. She orders some 3D cat scans to plan her approach, and a bunch of lymph nodes in my chest and abdomen are enlarged. She knows my history so she orders an immediate PSA, and a full-body PET scan. I light that baby up from groin to armpit.
My PSA comes back--they did an ultrasensitive assay. It's 0.05. No big deal, except that a year before, it was 0.02. After the PET scan results and a biopsy of my armpit lymph node, it turns out I've got follicular lymphoma. Treatable, but not considered curable (well, if you fail multiple treatments, you can get something called CAR-T that literally costs a few million $USD that cures about 2/3 of the time).
My surgeon consults with a lymphoma specialist--can this patient have open heart surgery? Or should he be treated for lymphoma first? The answer was absolutely fix the heart first. So we did that. It went fine. I'm now part cow.
My lymphoma is not causing any problems, even now 2 years later. The strategy, which may sound familiar, is watch and wait. There's no benefit, in cases like mine, of treating early. It can even shorten your life, and the treatment, chemo+immunotherapy, is not exactly a walk in the park. I see a lymphoma oncologist every 90 days, and have an annual CT scan. The nodes are growing, but very slowly, and my blood counts are fine.
As far as PSA goes, I was pretty worried at first--I mean, 0.02 one year, 0.05 the next--would it be 0.1 the next year, and so forth? As it turns out, no. I've now had multiple PSA tests, all the standard assay, at Mayo, and I haven't broached 0.1 ng/ml to date. So if my PSA is increasing, it's doing so very, very incrementally. The prostate specialist I saw at Mayo said it could very well be a substance that is chemically close to PSA (anyway, that's my take on what he said). He didn't recommend ultrasensitive testing in cases like mine.
So it looks like my heart or lymphoma will get me first (or the crazy drivers around here!)
My wife also got diagnosed with lymphoma, just over a year after me, but hers is small cell lymphocytic leukemia (SLL) which is about the same thing as chronic lymphocytic leukemia (CLL) that you may have heard of. Same disease--it's just if it's found in the lymph nodes first, it's SLL. She's also on watch and wait, but will probably need treatment before many years pass.
In short--salvage radiation worked for me, all those years ago, mopping up whatever surgery left behind.
I wish all of you well.
G.