Monitoring PSA post surgery with Gleason 9

Some people (10%) do not produce much PSA. In some cases, they also do not produce PSMA, Which means that treatments like Pluvicto won’t work And a PSMA Pet scan shows nothing, Even in the prostate.

Having your PSA jump from 1 to 4.3 pretty much says you do Produced PSA.

After surgery, the three month PSA test usually comes back undetectable, mine came back undetectable two months after surgery. At this point, you seem to be concerned about the wrong issues. If your PSA results are high after three months, then you have metastasis somewhere else

Doing an FDG or Choline pet scan Can show metastasis that don’t show up on the PSMA pet scan.

Thanks @jeffmarc
I guess I’m just concerned about how my doctors will monitor me because it seems to me like I had something undetected going on for maybe years while my psa was around 1, but maybe this thing just developed within 1 year? I don’t know, but I hope psa tests will be accurate for me since I understand that not all aggressive cancer cells express psa. Thanks!

By aggressive, you may mean small cell or neuroendocrine prostate cancer. It cannot be seen on a PSMA scan. Not only is it hard to see it is hard to treat. The few people I’ve known that have had it aren’t still around.

It is unusual to see neuroendocrine cancer. A very small percentage of prostate cancer patient get it. It is more common if you are on one of the ARSI or ADT drugs for 4+ years, But even in that case after four years there is only a 5% chance of having that happen.

It is possible that some of your cancer cells produce PSA and other don’t.

Thanks @jeffmarc , I just mean Gleason 4+5=9 aggressive , not some rarer type. Do you think any reoccurrence will show up in a psa test?

The PSA test is used to find out whether or not the cancer is coming back. It could be that your cancer became more aggressive In a short amount of time. How much time was it between getting the 4.3 PSA and the previous test, Three months, six months? The doubling rate is what they go by to figure out how aggressive what you have is.

After surgery, the results can be all over the place. One of the meetings I attend had somebody show up who had it reoccur 30 years after surgery with a Gleason nine. Other people with a nine have metastasis show up quickly and have to move on to new drugs very soon after surgery. Going on ADT after surgery can put off that return of the cancer. With a Gleason nine they recommend you go a couple years with ADT.

There is no constant that you will tell you how long it will be everybody is different.

Was 14 months where it went from 1 to 4.3. Prior to that was always around .9 - 1.01

14 months is a long time to give Gleason 9 a chance to grow. I can understand you got comfortable with the fact that it always stayed down.

You have a clean PSMA pet scan, which gives you a chance for the surgery to be successful and to keep you in remission.

@jeffmarc has covered the bases pretty much, John. Your PSA does show movement, so it’s not one of those that don’t produce much PSA - it might have been 3X that value 6 months from now, right?
What you and your docs will watch on your 3 month PSA’s is movement and velocity. If, after 6 or 9 months, or 2 years or whatever, your PSA’s consistently rise (and by how much) you’ll KNOW that your cancer is back and growing.
Hopefully that will not happen and you will enjoy many years cancer free. Best,
Phil

Thanks @heavyphil !
Good points. I’m just sort of an anxious control freak and I don’t want to find out it’s spreading by the time my PSA moves. Don’t want to end up like Frank Zappa for example.

Hi John,

I am also a Gleason Niner and I understand how you feel. Following radiation and ADT for persistent PSA following prostatectomy I asked my oncologist for monthly PSA , Testosterone and blood panel tests. He agreed( of course I pay for them $230 a month until I pay off my deductible). The other thing I did was to get a second opinion from Fred Hutch in Seattle. They did a complete somatic analysis of the genetics of my cancer cells. It wasn’t good news but confirmed the aggressiveness of my cancer cells confirming why I had Gleason 9 and an earlier Decipher score of 0.99. Despite the bad news, their analysis did confirm the benefit of knowing the details when you get bad news. They suggested that I would be a candidate for PARP inhibitors if my cancer returned to active down the road. This is now on record with my healthcare provider and my oncologist is happy about that since it’s hard for him to swing such expensive treatment on his own.
After finishing 6 months ADT I have had 3 months of undetectable PSA. I always feel a bit of tension waiting for the results each month but on balance I would rather know if there is a recurrence sooner rather than later. When or if I have a recurrence I will definitely be going back to Fred Hutch for another second opinion on next steps.
Take care Des