Slow, but continued uPSA increase

My recent 3-month uPSA readings show a slow but steady increase over recent 3-month intervals:

0.023
0.038
0.036
0.049
0.054
0.065 (today's result of yesterday's blood draw at my 6-year checkup with uro)

Yesterday my uro suggested that I have germline (DNA) testing just to be prepared, given the many options should treatment become necessary. He recounted a case of someone who had been undetectable and then, 8 years post-RP!, went from a PSA of 0.1 to double digits in just a few months and developed large metastatic tumors. On the up side, he has responded very well to treatment and currently has an undetectable PSA again.

My PSA is much too low for any imaging, and I hope that if my PSA continues to rise, the rate of increase stays linear.

Djin

Thanks, Mumbo.Yes, I have some time *IF* my PSA trend doesn't speed up. At my visit we talked about the sweet spot for PSMA-PET imaging. I think my uro said that for Pylarify, at 0.2 it has a 50% change of revealing existing mets. That's neither a very low PSA nor good sensitivity. Also, most tissue produces some PSMA, but some men produce larger amounts, and false positives can be an issue.

The 0.03 (or, better 0.01) predictor you mention was research done based men's PSA nadir. Mine was a low 0.007, but of course that's no guarantee of not encountering BCR.

Well, I'll hurry up and wait ;) I'll probably keep busy researching treatment options based on the result of the genetic testing. Like my primary treatment six years ago, I'll just deal with whatever comes up: there's no choice, and for me worry is wasteful emotion that serves no purpose.

Djin

Post Edited (DjinTonic) : 8/4/2023 3:19:40 PM (GMT-8)

Have you been getting your PSA tested every 3 months for the full duration? Or is this a new protocol based on something you’ve seen?

You are being proactive and following due diligence, Djin Tonic.

You're tracking fluctuations, and watching for trends.

At some point, a diagnostic scan might be in order.

When I have visited Dr. Kwon at Mayo Clinic, he is a strong proponent for scans and diagnostic imaging, when needed.

As rocker Tom Petty's song lyrics remind us ~ "the WAITING -- is the hardest part."

Know that you are surrounded by supportive comrades here, of which I am one!

Keep us posted & remember the wisdom of our doctors and the power of individualized treatments!

CYCLONE ~ # Iowa State University

DjinTonic said...
…The 0.03 (or, better 0.01) predictor you mention was research done based men's PSA nadir. Mine was a low 0.007, but of course that's no guarantee of not encountering BCR…

I was not thinking of that specifically but more of the ever evolving criteria of “early” salvage radiation criteria.

I went through all of this back in 2018/2019 with my downhill diagnosis and ended up with ART as it had the best odds, a double or nothing roll of the dice on my part. The current definition for eSRT seem to be PSA = 0.20-0.50 but there seemed to be a number of people (patients, doctors, and internet pundits) that think or thought this criteria is too high. I think the research you mentioned above led to the position that PSA > 0.03 was the best time to start ultra early SRT which was floating around back in 2019. There also seems to be some people (me?) that think PSA = 0.10-0.20 is an appropriate criteria to get going but I have not kept up with the latest studies much since my difficult ART decision.

Of course, any really early PSA criteria negates the PSMA scan providing significant assistance in the evaluation so the conundrum of waiting is offset with risk as most studies seem to indicate. Early treatment has better results but no one seems to know what the “best” criteria is and every situation is different. I suspect that is on your list of thing to do as you untangle this situation. Hang in there, no quick anything in this business.

Since I am not a professional, I answer according to my experience according the stories I have read here and in some other sites.
Such a slow growth of post-surgery psa like yours may remain like that for years. And, in the case it needs treatement, it is often a local not very aggresive extension that can be simply removed with radiation. Even if it is a distance recurrence, most chances are that it is easily maneagable. Statistics take doubling time as the best indicator for prognosis, with time to recurrence as the second best. Do not be too much impressed by cases that are not the rule, but the exception.

DjinTonic said...
I don't remember seeing evidence for starting SRT just above 0.03. In fact, one paper said that 0.03 or lower at 2 years post-op was a good prognosticator for remaining BCR-free.

I think the tall guy used to be a big fan of very early SRT.
https://www.prostatecancer.news/2016/09/very-early-salvage-radiation-has-up-to.html
Not sure if he still thinks this way today.

The fact that many years have passed before your recent uptick in PSA is likely a sign that bodes in your favor, Djin. From a layman's POV, it seems logical that an aggressive Pca would have reared it's ugly head long before this time. I've been impressed with your knowledge on the Pca board topics and your willingness to support others who struggle with problems related to the disease. I've learned quite a lot from your posts. Thanks for sharing your knowledge. I wish you all the best as time marches on.

At my visit, my uro suggested we get started on the germline testing and I now see why: the earliest appointment I could get at Duke was in October, and he said the results can take a few weeks as well. Anyhoo... I came across this review paper that I thought some others might find helpful:

Germline testing and genetic counselling in prostate cancer (2022)

"Abstract

Genetic testing for prostate cancer is rapidly growing and is increasingly being driven by precision medicine. Rates of germline pathogenic variants have been reported in up to 15% of men with prostate cancer, particularly in metastatic disease, and results of genetic testing could uncover options for precision therapy along with a spectrum of hereditary cancer-predisposition syndromes with unique clinical features that have complex management options. Thus, the pre-test discussion, whether delivered by genetic counsellors or by health-care professionals in hybrid models, involves information on hereditary cancer risk, extent of gene testing, purpose of testing, medical history and family history, potential types of results, additional cancer risks that might be uncovered, genetically based management and effect on families. Understanding precision medicine, personalized cancer risk management and syndrome-related cancer risk management is important in order to develop collaborative strategies with genetic counselling for optimal care of patients and their families.

Key points

-- Germline (hereditary) genetic testing is rising in importance for treatment, screening and risk assessment of prostate cancer.

-- Multiple hereditary cancer syndromes might be associated with prostate cancer, might confer risk of other cancerous and non-cancerous conditions, and can have hereditary cancer implications for family members. The rates of these syndromes can vary based upon the attributed genetic mutations.

-- Multiple aspects of germline testing should be discussed in the pre-test setting for men to make an informed decision, including the purpose of genetic testing, the benefits and risks of testing, hereditary cancer risk, identification of additional cancer risks, familial implications and the state of genetic discrimination protections.

-- Genetic evaluation can be conducted by genetic counsellors or a hybrid model can be employed, in which health-care providers deliver pre-test informed consent for testing, order testing and then determine referral to genetic counselling for appropriate patients.

-- Precision medicine is increasingly driving decisions for germline testing. Poly(ADP-ribose) polymerase (PARP) inhibitors, immune checkpoint inhibitors and various other agents now in clinical trials have clinical activity in patients with certain hereditary cancer gene mutations, such as in DNA repair genes.

-- Patients’ experiences with germline testing can be variable; taking the patient’s current experience into account, considering referral to genetic counselling when needed and offering germline testing for eligible men at repeated intervals if initially declined are important."
_________________

Introduction
Inherited cancer syndromes contributing to prostate cancer
Table 1 Major hereditary cancer syndromes linked with prostate cancer
Germline testing criteria and approach to testing for prostate cancer
Table 2 Prostate cancer panels available through experienced USA-based clinical laboratories
Management of prostate cancer based on germline mutations
Genetics care delivery
Unique aspects of genetic counselling for men with prostate cancer
Conclusions

I may find myself needing to research more about "Management of prostate cancer based on germline mutations"

Hi Djin,

Just wanted to say hello and let you know that I'm thinking about you and sending positive thoughts. You have always been so knowledgeable, helpful and supportive to all of us on this forum. I wish that I could provide you with the same information and comfort.

Hang in there. We're all rooting for you.

M

PS. My husband's doctors tried to discourage my husband from having a PSMA scan. They said that his PSA was too low (0.10) and that the incidence of false positives would be too high. We basically insisted on the scan. Right before the scan, my husband's PSA jumped to 0.15. When the scan showed something on a pelvic lymph node, my husband's doctors changed their tune. They then said that they were glad that he had done the scan. His RO told us that he had two other patients that week who "lit up" at 0.12--and he was thinking that they might need to change the threshold for the PSMA scan to a lower number. All of this is just anecdotal but, with such a new scan, they're all learning new things.

My germline testing result came back. Testing was done by Invitae:

_____________________________
Common Hereditary Cancers Panel
Primary panel (47 genes)
APC, ATM, AXIN2, BARD1, BMPR1A, BRCA1, BRCA2, BRIP1, CDH1, CDK4, CDKN2A, CHEK2, CTNNA1, DICER1, EPCAM, GREM1, HOXB13, KIT, MEN1, MLH1, MSH2, MSH3, MSH6, MUTYH, NBN, NF1, NTHL1, PALB2, PDGFRA, PMS2, POLD1, POLE, PTEN, RAD50, RAD51C, RAD51D, SDHA, SDHB, SDHC, SDHD, SMAD4, SMARCA4, STK11, TP53, TSC1, TSC2, VHL

This test did not identify any pathogenic variants known to cause disease.
_____________________________
The genetic counselor at Duke I initially spoke with said that most reports come back showing that nothing was found.

That's a bead off the worry bead chain.

Djin - My Invitae genetic testing checked 21 factors in 2019. There was something about saving specimen for future testing since the field was rapidly evolving. I don’t recall the details. Same conclusion statement.

On the one hand, you hope something is found. On the other hand, being negative is good too. Not exactly sure how I felt at the time, glad I did it was about it.