PSA after surgery, salvage radiation, and ADT?

[PGDuan]

Hi all, how alarmed should I be that a first 0.15 PSA after everything means I am now metastatic and need to prepare for long term ADT? Odds of a bad test or odd bounce? Anyone ever have low PSA after primary and adjuvant/salvage treatments and then see it go away again?

What do you start thinking about in terms of strategy after adjuvant / salvage has failed and you’re on to the chronic situation?

Here’s the story - after 4 years of undetectable PSA after starting ADT and everything else my ultrasensitive PSA test came back with a result of .15 yesterday. This is about 15 months after coming off ADT and Zytiga.

Of course we had been hoping that it would be undetectable for many years. Meeting with my doctor at Stanford next week so I’m sure I’ll get their opinion but wanted to see if anyone had similar experiences?

Thanks all.

[Tall_Allen]

Get retested in a month.

[PGDuan in reply to Tall_Allen]

Thanks so much, yet again, Tall Allen. You are the best.

Will try to breathe and keep the anxiety down til my next test. Take each day as it comes.

[Justfor_]

Your doc will most probably say that he will wait until your PSA reaches 0.5, or 1.0, before trying anything more. The time has come for you to juggle the odds of a PSMA PET/CT. The higher the PSA, the higher the probability of a positive detection. You will have to pay out of pocket and at your current PSA (provided it is confirmed by re-testing) it is somewhere between 30-40% efficient for spotting out lesions or metastaseis. Your call.

[Hawk56]

My quick history, diagnosed in Jan 14, surgery in March 2014, T2CnoMX, ECE, SV and margins negative, GS 4+4, 10% involvement. Flash forward 18 months, BVR when PSA came in at .2 (had been less than ,1 using standard, not USPSA test) then 90 days later .3.

SRT in March 2016, PSA 90 days after .7, retested in a month 1.0 and it kept climbing. So, went to Mayo in January 2017, had the C11 Choline scan, four PLNs hot. I did 18 months of ADT, six cycles of taxotere and 25 radiation treatments to the PLNs with boosts and wider margins. Finished that treatment with the last 90 day Lupron in May 18, so cleared my system in July-August. T had been <3 throughout treatment., by October it 135 and by Feb 19, 435.

Here's the PSA since:

2018

12 February 2018 Testosterone <7, PSA <.1 (Mayo)

27 April 2018 Testosterone <3, PSA <.1 (SMC)

1 August 2018 Testosterone <3 PSA <.1 (SMC)

30 October 2018 Testosterone 135 PSA <.1 (SMC)

2019

2 February 2019 Testosterone 481, USPSA .36 (AHC)

16 February 2019 USPSA .24 (AHC)

2 April 2019 USPSA .06 (KCUC)

7 June 2019 (USPSA KCUC).124

19 August 2019 (USPSA KCUC) .06

2020

3 January 2020 USPSA .07 (KCUC)

5 May 2020 USPSA .07 (KCUC)

4 August 2020 USPSA .09 (KCUC)

5 November 2020 USPSA .16 (KCUC)

2021

5 February 2021 USPSA (KCUC).29

30 April 2021 USPSA (KCUC) .3

12 July 2021 USPA (KCUC) .17

My urologist and I have done nothing so far in terms of deciding about going back on treatment. He doesn't have any idea why it bounces around so when it goes up, he shortens the time until the next test, when it goes down, he is willing to lengthen the time.

I've heard it before on this forum, a single laboratory PSA data point doesn't constitute a decision to do something, multiple readings that show a continuous trend are needed to inform the decision making.

For me and my medical team, we would need to see the PSSA continue to go up, we would probably image when it hits between .5-1 and then informed by the imaging and other clinical data, make an informed decision about treatment, whether to and with what.

Lastly, consider when doing your PSA tests to use the same lab, same rough time and for me, I try and follow the same routine 48-72 hours out in terms of diet, exercise, sleep...

Treatment Summary

[LastMohikan in reply to Hawk56]

Dear Hawk56, when your T is over 50, MO did not try to change the Lupron to another one?. Thanks, Umit

[Hawk56 in reply to LastMohikan]

While I was on Lupron for 18 months from Jan 17-May 18 , my T was always less than 7 or 3 depending on the lab measuring. Once I stopped Lupron after 18 months, my T gradually returned, first reading was 135 in Oct 18 and 435 in February 19.

[PGDuan in reply to Hawk56]

Thanks Hawk - super helpful to hear your experience. Interesting how it bounces around at very low range.

[Horse12888]

I can understand that PSA 0.15 after years of being undetectable (<0.1) is reason for your concern, but a) it could be a random result or lab error, and your next test may be lower, b) your PSA may stabilize in that range for years without progressing, c) it certainly doesn't mean metastasis; until it's 5 - 10, the odds are that it hasn't metastasized. In the US, PSA 0.20 in consecutive tests is the definition of BCR.

Mine was <0.1 for two years after RP, SRT, and ADT. It's been ~0.16 for more than 3 years now.

If you Google "adt high-does transdermal estradiol," you will learn about an exciting new alternative to LHRH drugs that carries far fewer SEs. I was living in terror of a life sentence of ADT without parole until I came across this.

[PGDuan in reply to Horse12888]

Super helpful to read your post. Probably like most everyone, I wasn’t really prepared for a test result that wasn’t ‘undetectable’. Really appreciate the comments and article!

[Horse12888 in reply to PGDuan]

Yes, my first detectable result was 0.12 in July 2018. I was shocked, especially because of the horrific experience I had had on ADT and the notion that I may have to life the rest of my life feeling so shitty, without a moment of any real joy. I was pretty worked up, I can tell you.

Now I no longer live in terror; that's such a relief.

Btw, another breakthrough is relugolix. It's an LHRH antagonist, but it's taken orally and when it's stopped, T recovery happens in 2 - 4 weeks, rather than 4 - 12 months. Knowing that you're just a month away from having your life back is a huge advantage.

Best of luck to you.