High risk low PSA

LC,

So, to be clearly understood, you've been off Lupron since July 2019, and your radiation started then, and your PSA has been slowing rising since the RT finished in late 2019?

You've never had a low-stable PSA since RT?

This does raise concerns, I'm likely not the best to respond, the high risk RT guys likely know better. It's certainly a concern to raise with your Radonc/Medonc.

You may be in the Bounce window that about 65% of radiation men experience. The current PSA is too low to restart treatment and too early to utilize any scans. I agree with the uro that wants to keep a tight leash and get serious about treating at a lower level than standard of care at nadir plus 2.0. It has often been stated that low risk is too often over treated and high risk is under treated. What was the percent of involvement in each core? The total tumor assumed volume would tell us much more about the risk level.

I would start scans at .50 and see if anything shows that can be treated, but not necessarily restart ADT. Moving to more frequent testing will add data points to better detect any trend. I would even go to quarterly tests if you are significantly concerned. You look to be increasing at about .025 PSA per year. At that rate you are a few years from the .5 threshold and several years from the 2.0 standard of care threshold. If you are expecting the G4 strain to get aggressive, you would want to test more frequently. I am 12 years out and my uro just took me to six month testing from quarterly due to his concern about my high risk dx.

Since you still have a prostate the increase in PSA after stopping ADT is pretty normal. As JNF already wrote, just keep testing. I do hope that your PSA level will stabilize at less than 2.0 (ng/ml).

This is a tough one. I'm not current on recent studies, but I found myself in a somewhat similar situation after my primary ADT ended. Mine was a "very high risk" version, with only a 5.2 PSA at diagnosis. So, also fairly low for what the biopsy and MRI indicated.

A few years ago when my PSA was rising along with my T after ending ADT, I was searching for guidance on restarting ADT after primary radiation and ADT therapy. I also had 54 Gy whole-pelvic radiation.

When your ADT stops, the T rises, and your residual prostate's cells that survived radiation, potentially healthy cells, make some level of PSA. Theoretically, healthy cells can take the radiation and self-repair the DNA damage, so the remaining irradiated prostate can make some PSA. The PSA rises pretty quickly as the T recovers, but should level off once a saturation level is reached. The pattern matters more than the actual level. If the PSA keeps rising slowly with a steady T level, then that's more suspicious.

Anyway, there was very little info out there for a slowly rising PSA after primary RT + ADT. Very little. My med onc stood only on the "recurrence only if PSA > 2.0", and I challenged that considering my diagnosis. He was clueless and unhelpful.

I think this is a matter of what you are comfortable with. It's your decision. Good for you to ask about it here, sometimes you can get some fresh perspectives and questions to ask your doc. Sometimes the help is marginally useful. Sometimes... well... do what you think makes sense, based on what you know.

My choice was to go back on ADT after my PSA had slowly risen to 1.0. But that was my comfort zone, and based on my G9 5+4, if recurring probably would be cells that didn't make much PSA. So, my "1.0" might be the equivalent of something higher for someone else with more of the type 3 or 4 cells.

LC,

My husband is in the low PSA but intermediate risk group (if there is such a group), with PSA of 1.7 at diagnosis and G7 (3 + 4).

When my husband’s PSA became detectable almost 6 years after his RALP, I asked whether the salvage radiation trigger point should be lower given his low PSA at diagnosis. (My hunch has always been that my husband’s cancer produces very little PSA.) Some doctors thought yes; some thought no. There was no clear consensus. We decided to start salvage radiation at 0.1. His PSA was 0.15 by the time he actually started.

There is a HW member, rcroller, who posted his story a while back. His bone mets were misdiagnosed initially because it was thought that he couldn’t have mets at such a low PSA.

I’d be interested in what you find. I think this is an area that isn’t studied that often because it is rare.