Onward with durable remission

Hi northoftheborder

Yep the historical nature of all the data seems to overshadow its meaningfulness almost by definition for a changing treatment/management situation….. I think the overall survival increases by new and improved metastatis cure/management are coloring my views on longterm ADT…… however I guess I will find out … one way or another….Des

Unfortunately, Rocky, it IS a crapshoot when it comes to actually ‘seeing’ what’s going on at a cellular level.
PSA’s and PSMA’s are NOT infallible - not even close - but right now it’s what they use to measure success or failure.
I read your brief history and in spite of all the intense genetic testing you had done at the center of excellence, the factors which stand out to me the most are your dangerously high Decipher Score and PSA velocity after surgery.
My surgical pathology was Gleason 4+3, clean margins, no lymph spread, etc. There was no Decipher test at that time. It took 5 years for my PSA to reach .18 and I just finished salvage radiation and am on 6 months ORGOVYX ( last month).
Now if I’m on 6 months ADT for something that took 5 YEARS to return, how long should you be on it, when your PSA rose so quickly after surgery and your Decipher Score showed such an aggressive profile?
It would seem to me as a layman that all things being equal, you should be on it longer than 6 months….how long I certainly don’t know. Orgovyx is really not that bad and others on the forum have been on it for over a year with no significant side effects. I realize you are concerned with your situation becoming castrate resistant if you stay on ADT too long but I think you’d have to be on it for a much longer time for that to happen. Best…

There are lots of ways to address PC; as this blog explains, there are personal decisions to make. After my surgery, I learned that my cancer had spread to at least one lymph node. I decided to try the Mediterranean Diet and have my PSA tested every three months. It’s been three years now and my PSA has stayed at the undetectable level which I’m grateful.

Interesting point you bring up. Unfortunately there is no answer today, hopefully this is being studied. An awful lot of people want an answer to this, I would start doing ultra tests if this was shown to make a difference in diagnosis.

It's a new year and I'm in a funk, I'm 77 had chemotherapy 18 months ago then ADT for a year my PSA is undetectable .01 and have been taken off my luperon now for 4 months won't see the doc for another 2 months. I've talked to several RO'S with the same advise PSA undetectable let it be, never had any side effects from any treatment except fatigue and that's the rub on me. I've always been active living in Utah did a lot of back country with my dog's. Sorry for the run on I'm just happy to still be here.

Your description is much like mine except I am now 85.
Resumed PSA after a couple of years with none at Dr.'s request. PSA @ 12. Dr. comment "could be false reading " - 3 mo. later at 50. All 12 biopsy samples filled with cancer. Had spread to lymph nodes, but not to bones. Started ADT and six mo. later had a month's worth of radiation (daily). PSA went down to undetectable. On ADT for 2 1/2 years. Stopped June of 2023.

6 mo. out still have fatigue and brain fog. loss of muscle, etc. PSA is undetectable but so is testosterone.

Scheduled for testosterone therapy next month to help with weakness and hopefully brain fog. Will post again in 6 months

Hi Heavy Phil
It took awhile to find the phrase “ persistent PSA” as compared to “ BCR”. My 0.31 reading at 3 mos post surgery was pretty fast for a BCR and the theory is that something was left behind after surgery despite clear margins and no lymph node involvement. Hence 6mo ADT 4mos after surgery and 37 radiation sessions 5 mos after surgery. I know that my risk of BCR within 10 yrs is very high from the Decipher reading but I don’t know that 24mos of ADT will be a significant benefit over 6mos with monthly monitoring . The four oncologists that I met with all used the phrase “grey area” on longterm ADT. The other murkier area is the advisability of putting high pressure on relatively unstable cancer cells by taking away all their testosterone for a prolonged period and pushing them to castrate resistance sooner.
Having said all that I just don’t know if I will become a cautionary tale! I still find it a bit astounding that there isnt more definitive data for the range of risk stratifications of PC. From my reading I would guess that a lack of early risk stratification protocol by urology practitioners over decades has a lot to do with this. Sorry about getting on my hobby horse but I think aggressive PC should be called something different than low risk PC…..

I don't think ultrasensitive PSA makes a difference if your PSA is already detectable; the main benefit is that "undetectable" becomes a lower (and thus, more-confident) number, by at least an order of magnitude.

Do U.S. insurers routinely cover the uPSA test, or do you have to kick up a fuss? I originally had mine done at a private lab, so I was forced to wait 2–3 days to get the result. Now I just walk to the hospital lab itself (same distance), and see the result in my online chart in 1–3 hours instead.

My oncologist offered to let me have the more sensitive test, but said that it takes two or three days because they have to send them out. It wouldn’t cost me any more. I get almost all my other blood test results within 2 hours, But the PSA test always takes till late in the afternoon or the next morning.

In my case undetectable is a temporary thing, eventually Nubeqa will fail and I will have to move to a PARP inhibitor. Getting A more sensitive test is just not much of a benefit to me, I need to be concerned when it is .1 or higher and how quickly it is moving.

For those that may be in remission, the test is more useful. It definitely gives confidence knowing the number is so small.

Seems like GRAY should be the color of OUR lapel pin, right? I hear what you’re saying and I just can’t help but think of all the men who had this disease decades ago and were in the hands of urologists who really had no idea how this disease should be treated, let alone classified.
And even further, how many old time GP’s didn’t even refer patients to urologists? In fact, even the PSA test is relatively ‘new’ and STILL controversial!
I read recently that Rick Steves, famed TV personality/tour guide was diagnosed with PCa after having his FIRST PSA TEST at age 68. I thought I had read the article incorrectly but no, his doctor never did one…WTF??!!
Sorry to digress, but my point (I think!) is that even today there is no real consistency of thought when it comes to most cancers. Even in breast cancer they want to declassify ductile carcinoma in situ as ‘non cancerous’ and give it a different name since it is rarely invasive….rarely….
In your situation perhaps ‘plain old’ ADT is not the answer. Many have spoken about germ and somatic genetic testing (not Decipher) giving greater insight into what their cancer would/would not respond to down the road should it return (BRCA2). I guess you already know that its propensity to become castrate resistant is higher due to your Decipher score.
So maybe instead of staying on ADT longer and wasting time, a more proactive approach using different drugs might be more appropriate? Yeah, here you want off of ADT and I’m suggesting even more treatment - NOT what you want to hear, nor would I. But as you say, you don’t want to be the star in a precautionary tale either. What can I say? It is indeed a gray area😖 and a frustrating one for patients!