Anyone with aggressive prostate cancer (Gleason 9) and low PSA?

@vancouverislandhiker
Thank you so much for taking the time to reply.
My ADT therapy was planned for 2 years along with 42 x radiotherapy.

Curious...you say "Thankfully, the tumors had not spread beyond the prostate..."

The basis for that is?

To your question about low PSA and high GS...yes, not exactly common but there is literature that points to those who are diagnosed with low PSA and the biopsy comes back with high GS, 8-10. Mine was similar, see attached clinical history.

Your post indicates you chose radiation and systemic therapy.

Water under the bridge as they say but interesting that you and your medical team either decided not to or chose not to add an ARI or chemotherapy.

I say what is the basis for the statement that your PCa did not escape the prostate not to break up the party but because even today's most sensitive imaging cannot see micro-metastatic PCa.

It is for that reason that systemic therapy is most often used in conjunction with radiation therapy, particularly in high risk - GS 9 and GG 5

Like I said, I don't dwell on the past so as to the future,, I can only relate my experience and what my medical team and I do, study of one...

We do labs, labs and consults every three months.

We do have decision criteria in place to guide the next treatment decision...

Three or more PSA tests spaced three months apart that show an increase. We do try and be consistent, same lab, same time of day, I follow the same pre-draw routine...

AND

PSA between .5-1.0

The first criteria gives us reasonable assurance of a trend vice blip on the radar.

The second provides a statistically reasonable chance of PSMA PET showing where the activity is, 2/3 vs 1/3 below that. We don't feel there is a risk letting the PSA rise to .5-1.0

The imaging is critical in our treatment decision making. It give my radiologist something to work with. However, we know there is micro-metastatic PCa too small to be seen by the PSMA PET so we add short term systemic therapy.

After triplet and doublet therapy I've taken breaks. First time was almost five years, at 20 months and continuing the second time.

In both cases my T recovered in the first 3-6 months so no linear correlation between that and the return of elevating PSAs.

What will your experience be off treatment, you won't know.

I would consider discussing with your medical team which labs, how often and whether to do consults each time. I say that because if your labs come back as undetectable, T recovering, well, you and your medical team may spend the time talking off topic! On the other hand, if there is some concerning results, how long before you can get a consult!,

If, when, the clinical data points to a treatment decision,, do the homework so you can discuss choices - MDT only, MDT + systemic therapy - ADT, ARI, Chemotherapy, which agents, how long...

Kevin

Thank you so much for a very detailed response.

My thinking that the tumours have not spread is based on a Scintigraphy October 2023, that's all I have. However, your point about micro-metastatic PCa is noted.
By the way, I opted for a radical prostatectomy but was infected with Covid 5 days before the op. The GS of 9 meant that I had to accept another option. I was unaware that it was not safe to operate until at least 6 weeks after recovering from Covid. So, push came to shove.

My next meaningful checkpoint will be a blood test in May next year, 6 months after having my last 3 monthly Eiligard injection. That's as good as it gets!

My PSA was under 1.0. During my annual physical, my doctor did a DRE and felt a nodule. He sent me to a Urologist who felt the nodule but said I couldn't possibly have prostate cancer with that low PSA. He said to come back in 6 months and get another PSA. I said
"What if the next PSA is also low?" and he responded that he would then do a biopsy. I told him the next PSA was pretty much irrelevant since he was going to do a biopsy regardless of the result. He did the biopsy without waiting. I had a Gleason 4+4 cancer. I had an RP, a recurrence 14 years later, Orgovyx and 37 rounds of radiation. My PSA has been undetectable in 2+ years since the hormones and radiation. This is a long way of saying that for me and about 10 % of prostate cancer patients, the DRE can be a life saver. A lot of doctors no longer do it and some journal articles recommend against it, which makes me very upset. It's quick, easy, no cost and can save a significant number of lives by discovering low PSA producing cancers in men like me.

I'm thinking that it is business as usual thinking with low psa and not much chance of cancer! I am, fortunately finding lots of useful information on this forum. In your case you shouldn't have to fight the system!

@brownsf
How did you find out 14 years later that you had reoccurrence? Were you getting a PSA test every six months or so? Did your PSA rise? How high did it get before they told you, you needed salvage radiation, .2?

Some people don’t produce much, if any, PSA that might be why yours was so low, even though you had a Gleason eight.

Mine came back after 3 1/2 years and I have salvage radiation and that lasted about 2 1/2 years. I do have BRCA2 so genetic issues were what brought mine back.

I got PSA tests every couple
of months after my RP. My
ultra sensitive PSA kept increasing in minute amounts. After many years, it reached 0.2, which was considered the minimum for detection by the PSMA, which fortunately had recently become available at UCSF where I am a patient. They were able to pinpoint a nodule in the prostate bed for radiation. I was concerned that, with such
a low PSA producing cancer, my
0.2 might be more advanced than the PSA number indicated but fortunately that was not the case.

My recent testing for a PCa relapse has yielded rather discrepant data regarding the aggressiveness of the recurrence.

I had a RARP in 2015. Pathology showed Geason 3+4 and a positive margin. My highest PSA before surgery was. 5.2.

For ten years post-RARP, my PSA was undetectable (< 0.1). In June 2025, my PSA rose to 0.11, and a DRE detected a small nodule in my prostate bed Conventional wisdom is that PSMA PET doesn’t detect PCa below a PSA of 0.2 (some docs say 0.5), but my urologist ordered one anyway (and insurance covered it).

Well, my PSMA PET scan flew in the face of that CW! Not only did the nodule light up, but it glowed with an SUVmax of 13.3. Some docs think that SUV intensity correlates directly with cancer aggressiveness, but I’ve yet to find any definitive studies for that.

Fortunately, the scan did not show evidence of distant mets, but then conventional wisdom would say that my PSA was too low for that. Confounding, to say the least.

I asked both my RO and urologist if they could reconcile the low PSA with the PSMA PET scan results. The short answer from both was “no”. But both agreed that I had local recurrence that needed treatment.

I’ve since gone through IMRT (38 sessions) to treat the recurrence. Now I wait until mid-February for a PSA test. No PSMA PET scan is planned unless my PSA is elevated.

Btw, in the three months from the PSA test of 0.11 to the start of RT, my PSA didn’t change. An ultra sensitive PSA test a couple days before starting RT came back at 0.094.

So, not exactly the same situation, but one piece of data (PSA) suggests low risk and the other (PSMA PET scan) suggests high risk. Big data discrepancy that defies the conventional wisdom about limits of detection on PSMA PET scans.

Only the future will tell which data are telling the real story.

Best wishes to you going forward.

@melvinw It is a riddle wrapped in an enigma! The good news is that it took 10 yrs for your PSA to rise, so hopefully, even in the presence of glowing lights, your cancer is much less aggressive. Best,
Phil

@heavyphil Exactly, all that. I weight the ten year stretch quite heavily. The irony is that my urologist seems to be most alarmed by the PSMA PET scan, but that going forward, I will be evaluated with PSA testing alone. And my days of DREs are not behind me (bad pun intended). Thanks Phil.