Recurrent prostate cancer after RP in 2018...though seemingly not metastatic...yet.
Haven't done treatment. My story is in the profile and bio.
Anyway, PSA got as high as the 9's earlier this year...then fell to 7.7 in July...and now in September registers 3.4.
No idea what's happening or why.
It can happen when non-PSA-expressing prostate cancer cells take over. I suggest you get an FDG PET scan.
Damn it, you're bursting my "miracle" balloon with medical reality. Haha!
No seriously, thanks, I'll run that thought by the Hopkins MO and the docs at NCI. My next work-up there is pretty major, involving a PSMA-PET and one or two other scans...not sure what all.
Why FDG and not PSMA in his case?
Because tumors that do not express PSA often do not express PSMA either.
Thanks, I didn't realize that.
I watched my PSA jump around prior to my Dx; turned out we were dismissive of the very thing we were screening for. Interesting you consult with JHU (my daughter's alma mater and where I sought consultations as well). Years back JHU had very good research on <0.010 as most favorable outlook post RP. Also interesting, with all the comments you have received on your posts you make no mention of liquid blood biopsy testing nor imaging with a variety of contrast agents.
As I share, in 2018, post my unsuccessful salvage RT and at 0.13, I traveled to Europe for imaging that identified five suspicious pelvic nodes; six confirmed cancerous by salvage ePLND I had there as well. An insightful read from 2020. ncbi.nlm.nih.gov/pmc/articl... All the best!
Thanks, yeah, Hopkins is great. I was lucky enough to have my RP done there by a world-class surgeon (Dr. Allaf). When he got in with the robot, he discovered that my prostate, which they knew to be large, was actually huge (over 100 cc). It took him an extra hour to get it out. But the margins were clean, no sign of spread, and my side effects ended up being minimal. So now six years later, I'm back in the soup again. Go figure. One thing that I did not sufficiently appreciate about this disease: you're never out of the woods, especially when the Gleason number is in the 8-10 range. With that score, it seems like recurrence is not a matter of "if"...but rather "when."
My Gleason was just a 7. My current uPSA is just 0.03X. Would Hopkins even talk with me?
I am awaiting pathology report on liver lesion that was not on last years imaging. Also, I am still processing my recently identified TP 53 mutation that was not found in last years liquid blood biopsy.
My third treatment, salvage extended pelvic lymph node surgery using frozen section pathology method, done over six years ago at 0.11, took longer than expected because cancer had spread beyond the common iliac nodes to the para-aortic nodes. I went to Belgium for that surgery - JHU amongst other leading centers had no interest in doing the procedure.
From my perspective, once this beast is out, identification of remaining cancer is a matter of intent and diligence. IMO, recurrence post RP is misleading; it is still there, lurking.
Interesting. Wishing you all the best.
One other Hopkins story...not about prostate cancer. 10 years ago my Mom was in an emergency situation with a bleeding brain tumor. She lived in northeastern Pennsylvania, which is not a medical mecca to put it mildly. Also she was 78 years old, a retired school secretary of limited means...living on Social Security and a meager pension.
The doc at the small-town hospital there called Hopkins, and they dispatched a helicopter in not-so-great weather to pick her up and transport her to Hopkins where she underwent immediate surgery. The surgery was as successful as it could be under the circumstances, but her situation by then was terminal.
Still, it was pretty impressive how this prestigious institution responded to the medical needs of a nobody 250 miles away. Don't get me wrong: Hopkins is not above criticism, and I could level some criticism of my own if pressed. But I think it does deserve its lofty ranking and reputation among American medical institutions.
Well done by small town doc and JHU on behalf of your mom.
I agree Hopkins is deserving. The consultation I had played heavily into my decision for RP despite likelihood of mine was out of the gland. I do not think I am compromised by confirmation bias for all the $$$ I sent for my daughter's eduction.
My attempted subtlety was with regards to your share of IMO a lack of concern/urgency with your PSA and apparent lack of blood biopsy testing and multiple imaging methods.
PSA At Very Low Levels But Starting to Rise
PSA, Total vs PSA, Ultrasensitive
Weird but wonderful?
Which scans are suitable for recurrent PCa with very low PSA
Seeking Post-RP Advice for Very High Risk, G9, Low PSA
