Post Prostatectomy 6 years. PSA <.01 until now. Anyone else?

Posted by Tom @tom86, 6 days ago

I have been fortunate enough to experience PSA results of <.01 post prostatectomy. Now, at the 6 year mark, I have had a result of .02. I realize this is not a huge amount, however, wondering if anyone else has had this experience and what to expect going forward. I was very high risk at T3b, SVI, ECE, PSA 11, PNI, 4 +3. Wondering if I should expect a rapid increase now that it has reared it's ugly head? I have been very blessed so far. I would appreciate hearing from anyone else who has had similar experience. Thank you. Tom

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Profile picture for Jeff Marchi @jeffmarc

@tom86
If you looked at the link, I included, it said this

With biochemical recurrence diagnosed at uPSA ≥0.03, the majority (72%) of the high-risk cohort had failed by the median follow-up of 44 months.

72% does not equal 98% but it is not a good percentage to have to face.

Another factor, however, is that that these were high risk patients, Not your normal risk level patients. I wonder what your study really showed.

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@jeffmarc I will get it to you when I can. It showed what I stated it showed.....exactly. No variation, no conjecture.

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Profile picture for marlon @marlon

I am 2+ years post-surgery. My PSA has been < detect since then. My doctor said that even if does come back, it will be so slow growing that there would be plenty of time to address it. I interpreted that as he expects i'll die of something else before it's a problem. But more importantly, the PSA level would have to be high enough to identify exactly where it was occurring so that they could target treatment appropriately. That is, no general blasting of the area with radiation without a target.

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@marlon
I am also 2years post RALP. Just got my 6months follow up few minutes ago, I considered myself one of the lucky ones, with an undetectable PSA reading <0.01, I was told there will be fluctuations, but as long as it is not at .2 and increasing trend, everything will be okay!
I guess we have to focus more on the “good news “ for now , and be thankful, this mindset will help a lot to avoid unnecessary stress and anxiety until the next test.
I would like also to find out how other guys with non detectable PSA are making progress with incontinence or ED?

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Profile picture for oskarpr @oskarpr

@marlon
I am also 2years post RALP. Just got my 6months follow up few minutes ago, I considered myself one of the lucky ones, with an undetectable PSA reading <0.01, I was told there will be fluctuations, but as long as it is not at .2 and increasing trend, everything will be okay!
I guess we have to focus more on the “good news “ for now , and be thankful, this mindset will help a lot to avoid unnecessary stress and anxiety until the next test.
I would like also to find out how other guys with non detectable PSA are making progress with incontinence or ED?

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@oskarpr
Hi, Congratulations. Always a relief.
No urinary problems at all. Total ED though, since day one.

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Hi Tom,

I agree with Jeff and other posters that more tests PSA tests are needed to determine if this is an upward trend or anomaly. While going from .01 to .02 between tests is concerning, it is really tough to tell how long it has been creeping up from .01 if your test for example is limited to the 2 digits. If future PSA tests indicate a trend, your Urologist will likely look at PSA velocity (rise/time). I am two years post RALP (Gleason 3+4) and am part of a research study at UC Irvine Medical Center (a COE) that was a part of my RALP surgical procedure that included a urethral sparring technique and other things. As such I meet/speak with the surgeon Dr Ahlering UCI Urology Chair (ret) or his or UCI's surgical team every 6 months. Like most men on this forum, I am always nervous about my PSA (prostate specific ANXIETY) tests every 6 months as my PSA tests ordered by my primary care vary up and down (.04, .05, .03) however my PSA ultrasensitive test w/HAMA ordered by UCI Medical Center as part of my study participation comes back at <.02 thus far.

Just last week when I was on my ZOOM meeting with the UCI team I asked, ..."what happens if my PSA rises?" The answer was... it depends on how fast (PSA velocity), and what my tumor pathology was, along with post surgical outcomes/features. If non aggressive features with doubling times greater than 12 months then they might recommend post RALP AS (active surveillance). If rising fast then they would recommend a secondary treatment after a PET PMSA scan that would hopefully light up lesions that could be individually targeted versus prostate bed radiation where only about 1 out of 3 BCR lesions occur (according to Dr Quan).
Interestingly, this UCI Medical Center has quite a few men under "RALP AS" including one man with a PSA that has risen to 4 over the past 25 years who shows no lesions in PET PMSA scans and has no symptoms. In his case, whatever cells escaped the prostate or were left behind from the RALP are non aggressive.
I will keep my fingers crossed for you that your spike was a test anomaly!

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Profile picture for diverjer @diverjer

Okay this may be a really stupid, but why would you ever get a DRE after prostate removal? What are they going to feel for, prostate is gone?

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@diverjer
A bill.

Australia just announced they will no longer do DRE‘s. Plenty of other ways to figure out whether somebody has prostate cancer.

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Profile picture for diverjer @diverjer

Okay this may be a really stupid, but why would you ever get a DRE after prostate removal? What are they going to feel for, prostate is gone?

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@diverjer Not really a stupid question at all.

Pathology after my RARP showed I had a positive margin, and Prolaris Score indicated at 53% chance of a BCR in ten years. Gleason was 3+4.

At eight years after my surgery, my urologist detected a small nodule in my prostate fossa during a routine DRE, but my PSA was still undetectable (<0.1). So no further action at the time. Two years later, my PSA rose to 0.11. A PSMA PET scan was performed and the nodule lit up with a SUVmax of 13.3. A pelvic MRI further indicated that the nodule was a cancersous lesion. At that point, I was diagnosed with a local recurrence and treated with radiation therapy.

If not for the DRE, I suspect that the PET scan would not have been performed, and I would be on active surveillance at most. Instead, the palpable nodule set things in motion and I got a jump start on treating the relapse.

In my case, a DRE gave the first indication of a local relapse, two years before PSA did.

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Profile picture for beachflyer @beachflyer

Hi Tom,

I agree with Jeff and other posters that more tests PSA tests are needed to determine if this is an upward trend or anomaly. While going from .01 to .02 between tests is concerning, it is really tough to tell how long it has been creeping up from .01 if your test for example is limited to the 2 digits. If future PSA tests indicate a trend, your Urologist will likely look at PSA velocity (rise/time). I am two years post RALP (Gleason 3+4) and am part of a research study at UC Irvine Medical Center (a COE) that was a part of my RALP surgical procedure that included a urethral sparring technique and other things. As such I meet/speak with the surgeon Dr Ahlering UCI Urology Chair (ret) or his or UCI's surgical team every 6 months. Like most men on this forum, I am always nervous about my PSA (prostate specific ANXIETY) tests every 6 months as my PSA tests ordered by my primary care vary up and down (.04, .05, .03) however my PSA ultrasensitive test w/HAMA ordered by UCI Medical Center as part of my study participation comes back at <.02 thus far.

Just last week when I was on my ZOOM meeting with the UCI team I asked, ..."what happens if my PSA rises?" The answer was... it depends on how fast (PSA velocity), and what my tumor pathology was, along with post surgical outcomes/features. If non aggressive features with doubling times greater than 12 months then they might recommend post RALP AS (active surveillance). If rising fast then they would recommend a secondary treatment after a PET PMSA scan that would hopefully light up lesions that could be individually targeted versus prostate bed radiation where only about 1 out of 3 BCR lesions occur (according to Dr Quan).
Interestingly, this UCI Medical Center has quite a few men under "RALP AS" including one man with a PSA that has risen to 4 over the past 25 years who shows no lesions in PET PMSA scans and has no symptoms. In his case, whatever cells escaped the prostate or were left behind from the RALP are non aggressive.
I will keep my fingers crossed for you that your spike was a test anomaly!

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@beachflyer
If you do not have an ultrasound sensitive test, you get one decimal point. If you get an ultra sensitive test, you get more than one decimal point, .02 is an ultra sensitive test. Could be they just don’t need to add more decimal points with this result.

The American Society of clinical Oncology has a completely different point of view about What you should do if your PSA rises after a prostatectomy. A lot of medical centers field the same way. Once PSA hits .2 After surgery,they recommend salvage radiation, They don’t wait for doubling rate, because early treatment results in long-term progression free survival.

From Ascopubs about what PSA to do salvage radiation.
≤0.2 ng/mL:
Starting at this level maximizes disease control and long-term survival. Patients treated at PSA < 0.2 ng/mL achieve higher rates of undetectable post-SRT PSA (56-70%) and improved 5-year progression-free survival (62.7-75%).
Delaying SRT beyond PSA ≥0.25 ng/mL increases mortality risk by ~50%.
0.2–0.5 ng/mL:
Still effective, particularly for patients with low-risk features (e.g., Gleason ≤7, slow PSA doubling time). The Journal of Clinical Oncology recommends SRT before PSA exceeds 0.25 ng/mL to preserve curative potential.
0.5–1.0 ng/mL:
Salvage radiation remains beneficial but may require combining with androgen deprivation therapy (ADT) for higher-risk cases.

This article discusses the above;
https://ascopost.com/news/march-2023/psa-level-at-time-of-salvage-radiation-therapy-after-radical-prostatectomy-and-risk-of-all-cause-mortality/
.

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I can identify with the nagging anxiety of minor changes in psa. After immediate post surgery surge to 2.8 followed by 20 months adtI enjoyed 3 1/2 years at less than .01. Last October .01 January .04, march @ mayo less than .1 they call undectable. April locally .1 july locally .15 . Will go back to mayo in sept . A trend to thimk about. Stay strong and keep testing!

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Profile picture for melvinw @melvinw

@diverjer Not really a stupid question at all.

Pathology after my RARP showed I had a positive margin, and Prolaris Score indicated at 53% chance of a BCR in ten years. Gleason was 3+4.

At eight years after my surgery, my urologist detected a small nodule in my prostate fossa during a routine DRE, but my PSA was still undetectable (<0.1). So no further action at the time. Two years later, my PSA rose to 0.11. A PSMA PET scan was performed and the nodule lit up with a SUVmax of 13.3. A pelvic MRI further indicated that the nodule was a cancersous lesion. At that point, I was diagnosed with a local recurrence and treated with radiation therapy.

If not for the DRE, I suspect that the PET scan would not have been performed, and I would be on active surveillance at most. Instead, the palpable nodule set things in motion and I got a jump start on treating the relapse.

In my case, a DRE gave the first indication of a local relapse, two years before PSA did.

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@melvinw What is interesting is; all the data I have read and including a written email from UCSF states "With a negative PSA there is absolutely no chance of prostate cancer being active". Yours' is the third I have seen lately indicating a DRE can show active cancer. This (to me) is amazing news. Why is the medical community (especially the UC syetem) not more proactive in this?

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Profile picture for melvinw @melvinw

@diverjer Not really a stupid question at all.

Pathology after my RARP showed I had a positive margin, and Prolaris Score indicated at 53% chance of a BCR in ten years. Gleason was 3+4.

At eight years after my surgery, my urologist detected a small nodule in my prostate fossa during a routine DRE, but my PSA was still undetectable (<0.1). So no further action at the time. Two years later, my PSA rose to 0.11. A PSMA PET scan was performed and the nodule lit up with a SUVmax of 13.3. A pelvic MRI further indicated that the nodule was a cancersous lesion. At that point, I was diagnosed with a local recurrence and treated with radiation therapy.

If not for the DRE, I suspect that the PET scan would not have been performed, and I would be on active surveillance at most. Instead, the palpable nodule set things in motion and I got a jump start on treating the relapse.

In my case, a DRE gave the first indication of a local relapse, two years before PSA did.

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@melvinw I just looked at an article on Google regarding DRE UCSF. They said again, it is extrememly rare for any DRE to be positive if PSA is below .1 That is why I have never had one post prostatectomy. They just believe it is too rare for it to be necessary. They have never required any in person follow up whatsoever (in 6 years). Just follow the uPSA and do the occasional Zoom call. I wonder if MAYO does routine follow ups with DRE? Maybe Coleen would know.

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