Rising PSA's after treatment - an answer

That pretty much sums up the point I was making but I was referring to treatment strategies at much earlier stages. So the paper essentially contradicts what I'm advocating but I still question how solid the data is given very few patients probably did triplet when they were pre-(clinical) metastatic. Regarding certain cohorts of mHSPC patients it states:

"While early, aggressive treatment intensification with triplet regimens, with or without primary radiotherapy, may seem attractive in this cohort of patients to maximize survival outcomes, the reality is that such “maximal” treatment intensification is unnecessary in the majority of these patients."

Where do you find this stuff, Kevin? This is great. Of course, I hope it's irrelevant for a long time for me, but I know it isn't for you and might not be for me. Anyway, thanks.

Sorry to hear about your sister. You make a good point and it's one I've told friends and family when they ask how I'm doing. I tell them so far so good but the worse thing about this disease so far is that for the rest of my life I'll never know if the cancer is truly gone and never coming back. The common 5-year remissions = cure is a bunch of BS in my mind with cancer in general. It's an odds game. A lot of people (without cancer) think, they cut it out and your tests are good a few years later so it's all gone right? Unfortunately maybe not and that's hard to live with in the back of your head. I have a new found respect for the mental fortitude anyone diagnosed with cancer has to have LONG TERM.

Because the progression with PCa can be so slow it's not like a life attitude altering, near death experience, type of thing. In general I think when we are young (like teenagers or in our 20's) disease and death are not even in our mind's picture. At middle age, being diagnosed with cancer, even one of the most treatable ones, the foreboding of potentially going through more aggressive therapies and having a chronic disease the rest of your life is quite depressing and anxiety causing, especially waiting for PSA test results. I am slowly with each passing month trying to reframe my perspective about having the diagnosis and mortality in general. So far, it has had a far greater negative effective on me psychologically than physically. The pee bag and couple of months of significant urinary incontinence weren't fun but that's just a drop in the bucket (no pun intended) of eventually being on some kind of treatment for the rest of your life.

This diagnosis has really put the fact that something is eventually going to get me right front and center in my mind at my middle age. A massive heart attack in my 80's would be a blessing in disguise for me and my family relative to all other other things that could take you. Especially the slowly progressive neurodegenerative diseases.

Sorry I've gone off track a bit but I'm finding the discussion in this thread both informative and comforting. It feels better to discuss your situation with others more or less in the your same shoes.

But I'll be darned if I don't give it the "college try" to nip the problem at the bud if there's still a chance of doing that.

Even though this forum is targeted at more advanced stage, I've found the participants here to be far more knowledgeable in general than other forums discussing any aspect of the disease at any stage.

Early in my journey when I knew almost nothing...what is a prostate, where is it, what does it do...my literature searches would take me to sites such as Uro Today.

I would subscribe to their daily newsletters. Some days they are pertinent, some not so much.

You learn to scan, find the pertinent and interesting articles and read through them.

The comments on this thread all resonate with me.

1 - Tx: Having had BCR at 1st postop PSA of .19, I was "spared" some of the wait & worry because I was directed to the Rad Onc and salvage radiation together with 4 mos ADT.
Post salvage tx PSA in Nov undetectable at < .02.
Now, I wait and worry for the 2d post salvage PSA in Feb. And wait, and wait (as in Casablanca).

2 - emotional: If PSA remains undetectable for a period of years (as predicted by the optimistic Rad Onc), I will be very, very happy; but will continue to live with the dread of the "knock on the door" of recurrence.
And people do not understand the foreboding. I am a positive person, but when almost certain recurrence is in your future with G 9 and EPE, that knowledge or expectation is always present.
And yes, friends and family think removal/treatment = cure. And if I have "the big one, Alice", before recurrence, then effectively they would be correct. If not...

3 - protocols: Clearly unclear.
SPPORT trial suggests salvage radiation to the whole prostate area and pelvic lymph nodes together with ADT has good outcomes (Kevin, you were correct and ahead of the curve).
Salvage tx sweet spot of .2 to .4/.5 has been trending lower.
The belief (aah, that word again) that PCa remains in the prostate bed/lymph nodes in the absence of PSMA PET identification at low levels of PSA was the basis of salvage tx for me. Hopes and prayers 🙏 for all of us is all that I can conclude. And may treatment breakthroughs be on the horizon.

4 - PSA monitoring post salvage tx: Regular PSA testing with a < .1 sensitivity may make some practical sense. I am receiving uPSA testing, however 2 of my tx buddies, each with a different Rad Onc, are testing with regular PSA tests.
And when my PSA rises above .02 and is detectable, but less than .1, what will that accomplish other than worry me? Because unless we are going to treat below .1 ...?
A 3rd RP friend (no BCR in over 3 yrs) is freaking out because his PSA went from .00something to still .00something higher (you get the point).

And yes, it does feel comforting to communicate these thoughts, concerns and fears with brothers in arms in this battle.

Best to all.

The comments on this thread all resonate with me.

1 - Tx: Having had BCR at 1st postop PSA of .19, I was "spared" some of the wait & worry because I was directed to the Rad Onc and salvage radiation together with 4 mos ADT.
Post salvage tx PSA in Nov undetectable at < .02.
Now, I wait and worry for the 2d post salvage PSA in Feb. And wait, and wait (as in Casablanca).

2 - emotional: If PSA remains undetectable for a period of years (as predicted by the optimistic Rad Onc), I will be very, very happy; but will continue to live with the dread of the "knock on the door" of recurrence.
And people do not understand the foreboding. I am a positive person, but when almost certain recurrence is in your future with G 9 and EPE, that knowledge or expectation is always present.
And yes, friends and family think removal/treatment = cure. And if I have "the big one, Alice", before recurrence, then effectively they would be correct. If not...

3 - protocols: Clearly unclear.
SPPORT trial suggests salvage radiation to the whole prostate area and pelvic lymph nodes together with ADT has good outcomes (Kevin, you were correct and ahead of the curve).
Salvage tx sweet spot of .2 to .4/.5 has been trending lower.
The belief (aah, that word again) that PCa remains in the prostate bed/lymph nodes in the absence of PSMA PET identification at low levels of PSA was the basis of salvage tx for me. Hopes and prayers 🙏 for all of us is all that I can conclude. And may treatment breakthroughs be on the horizon.

4 - PSA monitoring post salvage tx: Regular PSA testing with a < .1 sensitivity may make some practical sense. I am receiving uPSA testing, however 2 of my tx buddies, each with a different Rad Onc, are testing with regular PSA tests.
And when my PSA rises above .02 and is detectable, but less than .1, what will that accomplish other than worry me? Because unless we are going to treat below .1 ...?
A 3rd RP friend (no BCR in over 3 yrs) is freaking out because his PSA went from .00something to still .00something higher (you get the point).

And yes, it does feel comforting to communicate these thoughts, concerns and fears with brothers in arms in this battle.

Best to all.

"A 3rd RP friend (no BCR in over 3 yrs) is freaking out because his PSA went from .00something to still .00something higher (you get the point)."

It still baffles me any clinic would give patients their results to three decimals in any scenario. It's useless based on all the data to date and only creates unnecessary anxiety. There are some studies that show 0.01 and 0.015 were predictive but even 0.02 was not more than 75% accurate at best. Even if say two readings at or above 0.015 was confirmation of BCR, I doubt there's a single Urologist, Radiologist or Oncologist in the world that would recommend any treatment at that PSA level unless the doubling time was say, 4 months or less. Seems no one these days believe there's any advantage to doing SRT prior to 0.05. So there's no point of it no matter how you look at it. It's only detrimental to the patient psychologically.

When my result went from < 0.02 to 0.02 and I reached out to local small city Urology clinic about it, they were like that's a GREAT PSA you have nothing to worry about. Ya maybe relative to your patients about to go on Lupron with a PSA of 5. And even a gal at UCSF said, some labs don't use the < sign. Well if my lab changed their practice, they should have told me. Both naive responses in my opinion. Yes, I know it's no confirmation of BCR at this point but should I be testing in 2 month instead of 3 month intervals now? They both said "just keep monitoring" with no other information. (For uPSA, I doubt it since it didn't jump to 0.03 or 0.04)

My mind says to initiate salvage treatment as soon as possible.
I feel relatively fortunate (?) that with a PSA of .19 after RP, I had immediate radiation treatment to the whole pelvic region (WPRT) and the pelvic lymph nodes, together with 4 months of ADT.
The time for treatment, to paraphrase Kevin, is when you individually and under your circumstances believe that you have evidence of BCR or a definitive trend toward BCR.
Without regard to the actual PSA.
If a PSMA PET scan is negative; all the better.
If not, that's probably a fork in the road, or a European roundabout.
And, do not fear the course of salvage treatment.
Yes, the ADT sucks. I had a relatively mild case of side effects, and they still sucked.
And yes, the radiation can be a problem. I had a particularly severe case of radiation proctitis (probably related to the necessity of a balloon insertion), but it all cleared up about 4 weeks after radiation ended.
So God and good fortune willing, you will never require additional post RP treatment. I know 2 men who had RP over 10 years ago and have not had a recurrence.
Just my thoughts; wishing all well and thanks for your comments and input.

Yep, a single data point not a reason to hit the panic button. If that were the case I would have gone back on treatment several years ago.

I did not hit the panic button, neither did my urologist. Good decision.