Learned Something New Last Week

@billfarm

Yes and no...

A change in PSA is generally "disconcerting" to those of us in this club.

The question is, what to do?
You say labs at Mayo 3/26. My understanding is Mayo only tests and report to a single decimal. So, those labs may come back at < .1. That doesn't necessarily mean it hasn't increased. Also, keep in mind your high school math, if I understand correctly Mayo may report .1-.14 as .1 and when it is .15-.19 report out as .2, rounding up...

I think the real question to discuss with your medical team is what clinical data constitutes a treatment decision?

Will you image? If so, at what PSA, with what agent? If it comes back negative, what then? Keep in mind insurance and financial toxicity of multiple PSMA PET imaging.

Statistically and from intuitive understanding, the higher one's PSA, the greater the statistical probability of the PSMA PET showing where the metastases are, informing the treatment system.

For my medical team and I our "decision" criteria are:

Three or more PSA tests spaced three months apart that show and increase

AND/OR

PSA between .5-1

This assists in acting on trends vice aberrations and a 2/3, roughly, chance of the imaging showing where the metastases are.

We do not feel it risks my PCa getting out of control and becoming unmanageable.

In part, what you and your medical team are thinking about for treatment may drive your decision.

Why?

Well, there is some data that points to MDT only delaying the need for systemic therapy.

If that option is not under consideration and you are considering systemic therapy, doublet, triplet or ARI monotherapy then imaging results may not be a factor.

Discuss with your medical team.

What would I do? Nothing now. I would continue with jabs and consults every three months, when my PSA hit our decision criteria, image and then decide.

That criteria was met in April 2023. We imaged, did SBRT and 12 months Orgovyx. Here we are 20 months after completing that treatment, PSA is stable at .03. My oncologist and I meet today, likely set the next labs and consult for April, three years after SBRT and two after coming off systemic therapy.

Kevin

@kujhawk1978 Thanks for your thoughtful posts . I was at kumc yesterday. PA said their test is ultra sensitive. In off months I get psa @ Salina com care they also use that test. I guess I can only keep on top of the testing and react accordingly. 4yrs since psa went up three yrs post surgery. No slam dunk we re done with this moments.

I had mentioned some post ago would ask my PCP at Mayo Jacksonville to explain the traditional and ultra- sensitive PSA test and the difference between them and why.

At Mayo Jacksonville (himself explaining Jacksonville) the type of PSA test done is determined by the patient and the his doctors of which test is applicable the traditional test or ultra sensitive test. Stating Mayo Jacksonville has both traditional test as well as ultra sensitive tests.

They use undetectable when using traditional PSA test would be < l where ultra sensitive has a different value. I did not asked that number as I don't get the ultra sensitive tests. We discussed the difference and decision making. If you have a prostate and thus did not have RP then you are going to have PSA and ultra sensitive test would not be needed or applicable but still the decision of the urologist, R/O, PCP, deciding which test to order.

When you have had RP then he orders the ultra sensitive test is done (speaking from what he does not my medical statement) as want a more sensitive test. Thus the difference in what is considered undetectable. With ultra sensitive test there can be different levels of what is considered undetectable at different at labs and medical institutions.

We looked at my PSA and said was great. It is at .12 almost 3 years after radiation treatments finish. I never had hormone treatments. He said from his decades of experience that those with a prostate will have ups and downs over the years and only become a concern if the ups continue and continue.

This information above came from my Mayo Jacksonville PCP. He does a lot of research as he wants to provide the best medical advice to his patients with PC. I am lucky to have him as well as my other medical professionals at Mayo Jacksonville.

@jc76 Wouldn’t your PSA be suppressed by ADT? Did Proton therapy and my first 3 month PSA came back undectable. As I understand it, it is not necessarily the ‘nadir’. I understood that after I stopped Orgovyx that my PSA level would then reflect the actual nadir. Am I wrong?

@robertov
You are not wrong had dramatic affect on PSA levels and starving PC.
I was originally scheduled to get hormone treatments before my Decipher test came back low risk. My treatment plan then changed from radiation with hormones to radiation only. From my medical doctors ADT starves the prostrate cancer from what it feeds on testosterones.

As I mentioned I did not get hormones so hate to comment on something I did not have. But I just met with my PCP and we went over PSA tests and the decision of medical providers of which PSA test they order depending on what is applicable to the patient.

Per my Mayo doctors and UFHPTI your lowest PSA is common not to see until 2-3 years after treatments end. You like me have a prostate so we are going to have PSA.

In my opinion, and not a medical professional, the lowest point reached probably has a lot to do that your prostate has gone through WWIII and going to be highly irritated for a long time thus not seeing your lowest PSA for years for most.

For you having the PSA at undetectable is great news after at 3 months. If you were on ADT you probably were seeing PSA dropped dramatically even before you got radiation is that correct? My PCP said to me and showed me a graph of PSA after a couple of years is an slight up and down number. The concern comes from an continuous rise every time PSA test is done.

My PSA prior to treatments was 3.75. My PSA test at 3 months was under 1. It then started going down and down and my last PSA at 2.5 years was .12 I am due in April for my next one.

At Mayo Jacksonville my PCP orders traditional PSA test for me and stated that < .10 is undetectable. They do a ultra sensitive test on those who underwent RP.

@robertov
One's PSA is definitely artificially depressed while on ADT during and after radiation. It is, still considered your nadir as stated by the 2026 NCCN guidelines.

And you will likely find that once off ADT your PSA will rise.

Stay Strong Brother, We Got This

@jc76 Thanks! I always appreciate your perspective. I have Gleason 8, so it was hard to argue no ADT. I also planned on 3 a month trip, which I decided was important. Being put on Orgovyx allowed me to squelch PSA, while I researched my options. The only option I was offered was IMRT and no other options. Not good enough for me.

On ADT I went from 5.74 -> 0.94 -> 0.41. Now undectible. I now realize I won’t know my nadir until I stopped the ADT and waited for testosterone to come back. Their recommendation was 18 months of ADT. I read recently JAMA article on how long ADT is needed after treatment for high-risk. Offering some hope. But with no nadir baseline, it is hard to make that call. I won’t really know how successful the treatment is for a couple of years.

My RO & team are just in ‘data collection’ mode and don’t really want to think about what I want. These are among the many things I should have understood but didn’t. Thanks for everyone for their thoughts through this!

@robertov I assume that 5.74 was pre-treatment and that the next twe were after 3 and 6 months on ADT, with one year of ADT to go. Is that right?
You mentioned that you will not know until after you stopped ADT. I was told the same thing by my oncologist.
I was on Orgovyx for 6 months only. My PSA history is 7.9 & 10.05 two months apart pre-treatment. 0.3 & 0.22 after 3 & 6 months on ADT, 0.99 at three months after stopping Orgovyx. My radiation the rise in PSA is not a concern, it's expected with my testosterone recovery.
I have yet to see how high my PSA will be, before it starts going down to my nadir. It can be a long wait, I guess one to 2 years.

Correction: My radiation oncologist said the rise to 0.99 is not a concern; I told her I was concerned--to me it was "too early a bounce." But she has so many patients, and based on her experience she indicated she's least worried about me. I hope she's right: I will know my nadir after PSA stopped going up and then go down to the lowest point.

@robertov

There are recent independent Harvard, Duke, and Swedish studies that say for aggressive prostate cancer some men benefit from a higher or normal level of testosterone. Duke is doing AI based research to determine what are the characteristics to determine which men benefit from higher testosterone. This could take many years. For now, follow your doctor's advice.