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

@diverjer
That’s a test to figure out whether or not you have dementia, Or at least leading up to dementia.

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@jeffmarc
I know, but I would still like to draw a digital clock instead filling in the round clock, but they might not think it's funny? They also give me three words to remember, then ask me later. Another thing I notice on visit notes in MyChart, it's kind of a template of things and the doctor doesn't really do them. An example is they did a pedal pulse- which they never do.

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Profile picture for diverjer @diverjer

@melvinw
Thanks, I had to look up fossa, which just seems to be the empty space prostate was at. Then another surprise was they did anything with PSA of just .11. I thought they ignored anything less than .2 PSA. I guess it was the combination of the two (PSA and DRE) that made them check further. Sounds like a good idea and glad they found yours earlier than just waiting on a PSA to get to .2.

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@diverjer Yes, it was the DRE and PET scan data that really made the diagnosis, along with the PSA exceeding 0.1. My urologist, whos specializes in advanced prostate cacner, said that most guys he sees that present with a nodule like I had are at an advanced stage. I was a bit of an anomaly with just a local recurrence. Glad to be an anomaly!

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Profile picture for Tom @tom86

@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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@tom86 Well, perhaps it is true, statistically speaking that is is rare for a DRE to detect anything is PSA is <0.1. Clearly, my urologist (who was one of the tops in the Denver metro) never got tht memo. Actually, with one positive margin, he was always concerned about a recurrence after my RARP. He never did usPSA testing either, just the normal test. Of course, with usPSA testing, you can see trends developing at extremely low PSA, which is exactly the issue you are potentially facing. Sounds like the medical profession has swapped DRE anxiety for usPSA anxiety.

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Profile picture for Jeff Marchi @jeffmarc

@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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@jeffmarc
Hi Jeff
Thank you for the link and the PSA test references. The salvage radiation article was interesting, and I liked the reference to all-cause mortality as that is a truer picture of outcome. From a curative perspective I agree that early salvage RT results in a better outcome, but supposedly it only has about a 33% chance of hitting the tumors (based on Dr Quan) and one must accept the side effects with less than 50/50 odds. …ughhh…another conundrum on the PC train ride! Meanwhile my surgical team takes a “go slow” approach to BCR treatment to reduce exposure to unnecessary procedures and side effects. I suppose that is why these forums are so important along with second opinions from a Center of Excellence!
It is interesting that the American Society of clinical Oncology takes an aggressive stance on BCR (that I can understand) and yet they are one of the groups recommending no PSA testing for men after age 70 to which I tell all men to ignore such guidance, be your own advocate and get your PSA tested annually.

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After 5 Years of undetectable PSA's, my PSA is now .128 after 2 Upsa's. This is interesting as my PSA's seemed to always go up slightly after RP but they were all at or below 0.07 (which I was told is undetectable?). 6 Months after my last PSA (0.07), my regular PSA was .1 which now the AUA states that .1 is detectable. So I had 2 separate UPSA's and they came back as .126 and .128. I am choosing Early Salvage Radiation starting on August 24, 2026. I too have read that doing Radiation early (before .2) has been percentages of success than waiting until it gets to .2 up to .5. Also, I think it depends on your surgical report? Mine was good but I had a few risk items that I am not happy with. My physician was not too concerned and now my Rad Onc is not too concern either but I thought it was wise to go Forword. I am 69 Years old and in decent health so I don't want to wait until I'm older and certainly do not want this to metastisize. I'm having 20 days of Radiation and no Hormonal Therapy so hoefully I should weather this fine? Although, you never know!!! Thanks.

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Profile picture for jamie1957 @jamie1957

After 5 Years of undetectable PSA's, my PSA is now .128 after 2 Upsa's. This is interesting as my PSA's seemed to always go up slightly after RP but they were all at or below 0.07 (which I was told is undetectable?). 6 Months after my last PSA (0.07), my regular PSA was .1 which now the AUA states that .1 is detectable. So I had 2 separate UPSA's and they came back as .126 and .128. I am choosing Early Salvage Radiation starting on August 24, 2026. I too have read that doing Radiation early (before .2) has been percentages of success than waiting until it gets to .2 up to .5. Also, I think it depends on your surgical report? Mine was good but I had a few risk items that I am not happy with. My physician was not too concerned and now my Rad Onc is not too concern either but I thought it was wise to go Forword. I am 69 Years old and in decent health so I don't want to wait until I'm older and certainly do not want this to metastisize. I'm having 20 days of Radiation and no Hormonal Therapy so hoefully I should weather this fine? Although, you never know!!! Thanks.

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@jamie1957
I had a salvage radiation 3 1/2 years after I had I prostatectomy. This was automatically done by my medical providers when my PSA hit .2. I did have a six month Lupron shot Two months before they did them 40 sessions of radiation. You never really did notice that Lupron shot. A couple years later when I had to go on a full-time and it really hit me.

The thing is, if you don’t have the ADT, it may not be able to kill off all of the cancer that gets radiated. You don’t need it for long, but it really does help.

I’ve been on ADT for almost 9 years, Not a big deal. Everybody reacts differently to it. You never know if it’s going to really be a problem for you. A short Time of ADT is not that difficult to get over.

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Profile picture for Jeff Marchi @jeffmarc

@jamie1957
I had a salvage radiation 3 1/2 years after I had I prostatectomy. This was automatically done by my medical providers when my PSA hit .2. I did have a six month Lupron shot Two months before they did them 40 sessions of radiation. You never really did notice that Lupron shot. A couple years later when I had to go on a full-time and it really hit me.

The thing is, if you don’t have the ADT, it may not be able to kill off all of the cancer that gets radiated. You don’t need it for long, but it really does help.

I’ve been on ADT for almost 9 years, Not a big deal. Everybody reacts differently to it. You never know if it’s going to really be a problem for you. A short Time of ADT is not that difficult to get over.

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@jeffmarc
Thanks Jeff. This is a discussion I was going to have with my Rad Onc since my Decipher test came back as a 5.6. Pretty close to 6 which is the high level. I asked him once and he said no but I think I want to know what his rational is for the “no” ADT? I thought he told me that the ADT doesn’t “kill” the cancer, only the radiation kills it? I’ll have to revisit it with him. Thanks.

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Profile picture for jamie1957 @jamie1957

@jeffmarc
Thanks Jeff. This is a discussion I was going to have with my Rad Onc since my Decipher test came back as a 5.6. Pretty close to 6 which is the high level. I asked him once and he said no but I think I want to know what his rational is for the “no” ADT? I thought he told me that the ADT doesn’t “kill” the cancer, only the radiation kills it? I’ll have to revisit it with him. Thanks.

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@jamie1957
The decipher test doesn’t go above 1. Your result must be .56.

The rationale for having no ADT is that your Gleason score was 3+4 or 4+3 and nothing found in PSMA pet test. Besides that you have a low PSA and it’s not rising very fast.

You could mention this for short time ADT as an assist to radiation.
Adding androgen deprivation therapy (ADT) alongside or after salvage radiation for prostate cancer lowers testosterone levels to starve any remaining cancer cells. This combination reduces the risk of the cancer returning, slows disease progression, and makes the radiation work more effectively by sensitizing cancer cells to the treatment

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Profile picture for Jeff Marchi @jeffmarc

@jamie1957
The decipher test doesn’t go above 1. Your result must be .56.

The rationale for having no ADT is that your Gleason score was 3+4 or 4+3 and nothing found in PSMA pet test. Besides that you have a low PSA and it’s not rising very fast.

You could mention this for short time ADT as an assist to radiation.
Adding androgen deprivation therapy (ADT) alongside or after salvage radiation for prostate cancer lowers testosterone levels to starve any remaining cancer cells. This combination reduces the risk of the cancer returning, slows disease progression, and makes the radiation work more effectively by sensitizing cancer cells to the treatment

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@jeffmarc
Yes Jeff, sorry, .56 not 5.6!!!!! What you say is kind of what I initially thought but I think since it took my psa to get to .128, they are thinking that this is very slow growing and I get the sense that they are thinking that Early Salvage Radiation may be overkill at this point anyway? I sort of had to sell them on it!! Thanks for you input. I appreciate your time and knowledge in responding.

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Nest week I get another PSA test. My 6 week one was .06. This next one will be 10 weeks later or 16 weeks total.
I was wondering, seems I heard that I shouldn't be working out lifting heavy things or doing my 3 mile walks days prior to PSA test. Like I said I lift weights several times a week and walk a lot. At the 6 weeks PSA test I was walking some, but no working out on weights as wasn't released to do that yet.
Anyway is it true, I shouldn't be working out on weights or 3 mile walks prior to PSA test? They are doiong lots of other blood workup, but know activity don't bother them, but have heard working out can falsely raise PSA?

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