PSA above 0 2 after RP in 2020 but psma pet scan is negative

@knoyes01 My second opinion GU at a CCC facility said to wait until 2.0 and they could find it and treat it. Same concerns as you. I can understand getting radiation and ADT at .2 one time in the bed area as it isn't unusual for cells to leak into the area and seems a reasonable hunch. What happens if we have a .2 recurrence after that? And another negative PET Scan? Do we end up on ADT for life or do we wait until 1.0 or 2.0 and then get another PSMA scan hopefully with evidence of where the cancer is? If I have to end up on ADT for life I would like it to be evidenced based. These decisions are emotionally tough. Best wishes on your journey and if you are up to it I would be interested in what you decided and the outcome. Chip

@chippydoo That’s a great point, Chip…what if after Strike 2, there’s another on the horizon?
I think at that point - even though I am prevention oriented and like to catch things early - I too would wait to see something more visible.
I would think (hope!) that the lesion(s) would not be in the bed/nodes but probably a rib or an area that can be zapped with SBRT. After that, you are in a prime position to see a drop - or not - in Your PSA and can either be done at that point or opt for a period of ADT.
These are really hard decisions and you have to do your homework; but many times it all comes down to your own personality and mind set…
Phil

@kujhawk1978 What is PLN and WPLN?

PLN - Pelvic Lymph Node
WPLN - Whole Pelvic Lymph Node

@kujhawk1978 I've really appreciated the information you've shared for me to use to encourage my husband to ask for an ADT vacation after almost 5yrs status quo. But, I have been assertive w/doctors over the years & have a few do what I requested & it be the wrong thing. So I'm a little gun-shy when it comes to my husband's health, ha! And some of the doctors are so intimidating! My head is about to explode from all the info I've tried to gather from this group. I do need to take a little more time from my studying for praying. I can tell the difference when I do. Thanks again!

@jonesfit65

You are not alone in what you are experiencing....https://www.urotoday.com/index.php?option=com_content&view=article&id=163910:experience-of-uncertainty-in-prostate-cancer-a-qualitative-study&catid=1134&utm_source=newsletter_14741&utm_medium=email&utm_campaign=prostate-cancer-daily

With the plethora of choices brought by advances in imaging and treatment through medical research comes the possibility of "paralysis by analysis."

The NCN and AUA guidelines offer a starting point for discussions with our medical team. They are the science based, the clinical trials, peer reviewed...

However, it is that rigorous scientific process which also may hinder decision making. They may be "outdated" given the pace of change. They are population based so your husband's clinical data not fit exactly to the guidelines.

There are other valid web based resources, PCRI, PCF, the NCCN Centers of Excellence whose web sites are full with treatment related information.

My experience is there is no single "right" decision. There are "good " decisions.

Once I make mine in concert with my medical team I don't look back and ask "was that the "right one!?"

I look to the present, is it working?

Depending on one's age, other health factors and consequent life expectancy it may help to adjust the window of expectations for treatment outcomes. I ask myself, will this work for the next 3-5 years? I am not concerned about the 10-15 year outcome. Why, well, overall survival is hard to measure because of time. Also, in that 10-15 year window, too much changes to compare the original treatment with new ones brought about by medical research.

My triplet therapy decision went against the guidelines but brought darn near five years off treatment. Same with my doublet therapy, at 20 months now, next labs in January.

Don't be hesitant to fire someone from one's medical team if they are not supportive of shared decision making, are not active listeners, closed to new ideas that challenge existing paradigms...,albeit with solid scientific research supporting the new ideas.

Kevin

Yes indeed...that is the frustrating and quixotic feature to a PSA level that can slowly rise above the cut-off value of greater than 0.1 ng/ml. Clinical laboratory testing for PSA can detect PSA levels down that low, but a PET scan with Gallium-68 can't detect or identify "where" the prostate cancer cells are growing...there aren't enough of them for the Gallium-68 uptake for detection and measurement by the PET scan. I have not "arrived" there yet, and I hope that I never do, but this is all due to highly sensitive and specific testing for PSA down to the nanogram level, but unfortunately unmatched in radiological technology's sensitivity and specificity for prostate cancer. Before prostatectomy - and if we have cancer - our prostate gland lights up like a jack-o'-lantern during a PET Scan, but after the prostatectomy, it would take a LONG time for enough cancerous prostatic cells to be detectable, even though they are making PSA that "is" detectable by clinical lab testing. And...
In my situation, I am getting ready to discuss radiation therapy with a RO because as a pT3b I am at high risk for recurrence, so my urologist wants at least the consultation with the RO, even though at six months post-op, my first two PSA values have been < 0.1 ng/ml (see my other post asking all of you pT3b's if you had radiation, and how long after surgery, etc.