Onward with durable remission

@jeffmarc Are you able to cite the study you mention about undetectable PSAs and metastases? I’d like to read it. Thanks.

Here is one article I found just searching for your question.
https://pubmed.ncbi.nlm.nih.gov/17171704/
I did a search for this “undetectable PSA still have metastasis” And found numerous articles about this problem, Including the one above.

Hi

Gleason 9
Decipher 0.99

RP followed with persistent PSA then SR and 6 months Lupron. 2 weeks later PSA undetectable and T=4.

My health provider wants me to do a total of 18 mos ADT ( ie 12 mos more). Got a second opinion from a “center of excellence “ and they said 6 mos( ie no more). It’s a tough one for a guy on the street to make this decision. My reading says that the benefits of long ADT is constantly described as a grey area but the systemic side effects of long ADT are well documented. On that basis I have opted for the 6 mos (which I have completed) with a monthly PSA/T/blood panel test from hereon to catch anything if it twitches. Then I will be open to going back on ADT. So maybe I will be on Intermittent ADT which has been described in studies as “non-inferior” . The other murkier are I have read about is the selection pressure that intense ADT can put on the PC cells pushing them towards castrate resistance. So maybe intermittent ADT might be helpful? Being new to the PC club ie everything has happened this year I am a bit shocked at all the grey areas and highland mists that surround this particular cancer….
Des

Hi Des, Welcome to this bunch of brothers.
It sounds like you have an open mind, are staying close to your PC status, and are willing to reach out for other (ie Center of Excellence) opinions. And with a serious Gleason score that's most important.
Keep up the good work. And all the best for you for living the good life and staying up to date on any "twitches" from the PC.

I would try to decide which provider to trust and follow the recommendation. I took Orgovyx for 4 mos.
Very challenging issue; after 2 yrs of receiving treatment and reading, I still have not seen a definitive treatment protocol. And, I believe that is due to the variability of each of our "input info", actual treatment received and provider experience.
RP at 72; postop path confirmed G 9 w/ EPE, all else clear; 90 day persistent PSA at .19; Salvage Radiation Treatment to WPRT and pelvic lymph nodes w/ 4 mos ADT.
6 mo PSA after completing radiation and 4 subsequent uPSA quarterly results all thankfully "undetectable".
My Rad Onc at COE recommended 4 mos of ADT. 2 other treatment friends received 6 mos ADT (each had different Rad Onc at same COE). Not sure about their Gleason scores; may have been 7s.
Personally, I would look to the uPSA test 6 mos from end of radiation treatment (or ADT completion) as my "lighthouse". And test quarterly thereafter.
Best wishes; this is not easy.

Thankyou for the replies! Michael Charles your point about us having specific profiles is well put. My persistent PSA 3 mos after RP was 0.31. Although it felt like playing high stakes poker I waited a month to see if it would rise to 0.5 so I could get a PSMA scan. It went up to 0.39 after a month and I was nervous about waiting longer so then I pulled the trigger on ADT and 37 radiation sessions. The presumption was that it was in the prostate fossa area since I had a PSMA scan prior to the RP and it only showed PC in the prostate. Also the post op pathology showed clear margins and no lymph node involvement.Fingers firmly crossed that this presumption was correct.

A couple of other points about the center of excellence second opinion were,firstly , they reran my pathology and restated my staging without seminal vesicle invasion since they observed that it was intracapsular. They also are rerunning my hereditary panel saying that sometimes results from outside companies can be off the mark(!). Finally their research are running germline analysis of my prostatectomy samples. This puts me in their database for trials etc.Their
thoroughness was impressive.

I do appreciate that my health provider med oncologist agreed to monthly PSA/T/blood panel testing. I am curious what the curve for my T return looks like post 6 months of Lupron. Some studies say that 80% of men return to normal levels with a median of 12 months. That lengthens the relative T deprivation past the 6 months of Lupron but who knows what the curve looks like and how that impacts the PC.
Has anybody else done ADT “holidays”?

Thanks for listening. Des

People are getting PSMA pet tests after hitting .2. If you’ve got good size metastasis, they will show up at .43.

After RP My PSA dropped below .1 for 3 1/2 years. No ADT necessary. The fact that yours wouldn’t drop below .31 says that you have metastasis producing PSA Somewhere in your body, Probably The prostate bed, so salvage radiation makes sense.

I know a few people that have gone on ADT holidays. In some cases, It worked just fine, The PSA takes a long time to come back. I know one guy who is a Gleason eight, who ended up lighting up like a Christmas tree on a PSMA pet scan after his second holiday. He’s the leader of a bimonthly advanced prostate cancer chat I go to. Recently a couple of other Gleason 9 guys who talked about their holidays in meetings and mentioned that after the second one their cancer became a much more aggressive, resulting in multiple metastasis.

Metastasis can grow even with an undetectable PSA, Be vigilant.

The heterogeneity of prostate cancer is a perplexing topic that makes advocacy for your health a constant uphill challenge. Explaining prostate cancer to someone who doesn't have it is difficult, explaining that each path forward is essentially unique to each patient makes for an even less interested fan base. I recall a presentation on PCRI where they shared that Mayo had 44,000 patients in a given year and there were 2,200 variations of treatment for those patients!

Meanwhile, even with state of the art drugs like Pluvicto, the efficacy of the drug is such that it works for 1/3, doesn't do much for 1/3 and has negative impacts for the other 1/3. At the same time, imaging tests like PSMA PET are successful for 85-90% of patients. There are many good points in recent days about the risk/reward/consideration of ADT holiday, but I'd be hard pressed to imagine that there is any consistent information. It just comes down to self-education, trust in your health team, and listening to your gut and making a decision.

I occasionally remind myself that my grandfather in 1980 caught his PCa very late and 6 months later he died at 69, my goal is to not go out that quickly. I am also reminded that a former CEO at Hasbro Toy Company was probably in the best health of anyone I've worked with, yet somehow PCa got the best of him and he died at 57. Meanwhile, Netanyahu at age 75 has a UTI and his health team decides to remove the prostate.

Not sure of my point of this ramble, perhaps to just say that anyone on this forum is not alone, and we will leave 2024 with questions and enter 2025 knowing that we are in this together.

Thanks for sharing that. Just a note that that abstract for that study says it uses data from 1999–2004 for patients with PSA levels from 0.1 to 2.0. As far as I know, those predate the ultrasensitive PSA test (or at least its wide availability). I haven't yet found a study mentioning major metastases with undetectable levels in the uPSA test (< 0.01, or sometimes even lower), but am keeping my eyes open.

Regardless, even for the old data with the less sensitive PSA tests, they were looking at something that happened only very rarely.

Thankyou Jeffmarc for your cautionary tale….. I keep feeling it’s a crap shoot at some level ! I guess I hope that they come up with a non singular marker(s) for BCR. One concept I am holding onto is monthly testing …. although non PSA producing metastasis would confound that …. so trying to build some imaging into the surveillance would be good?