1. < Prostate Cancer
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Low, But Rising PSA--Wait for Imaging or Act Now?

Posted by bikeman1 @bikeman1, Apr 27 9:14am

I watched the entire PCRI conference on 4/25 (https://pcri.org), with two well-known experts: Dr. Epstein (Pathology) and Dr. Kwon (Relapse). Both were very relevant to my situation: 72 years old; RALP on 9/22/25; PSA on 12/30: < .01 (standard); PSA on 4/15: 0.171 (ultra sensitive) (next test on 5/4 to determine trend). My "bad news" and "good news" data are below. I have appointments at Johns Hopkins and MSK in NYC to get their recommendations on next steps.
Dr. Epstein emphasized the greater likelihood of BCR and worse outcomes if Cribriform is present, as this group had discussed before. But he emphasized Intraductal Carcinoma (IDC) as even more important (and flat out said a patient should get a BRAC2 test if he has IDC, which I am scheduling).
Dr. Kwon made a strong case for waiting for imaging results before moving ahead with salvage RT and/or hormone therapy. He argued that in relapse cases prostate cancer frequently does not start in the prostate/pelvic area and spread from there but it can be anywhere in your body and shooting radiation “blind” to the pelvic area carries significant risks. He also cited 3 studies showing better outcomes by waiting for imaging results before proceeding (at 3:54:10). Subsequent Q and A near the end with Dr. Scholz emphasized the value of MR imaging in these situations and how under-utilized it is.
I have emailed Dr Kwon to ask if his general approach still applies to someone like me with a lot of high risk factors (see below), but haven't heard back yet. As this group has discussed, studies show better outcomes in high risk cases by starting treatment with lower PSAs (and thus not waiting for cancer growth large enough to be seen on imaging). I looked at 2 of the 3 studies and didnt see discussion of this issue. I will let you know if I get a response.

"Bad News":
GL 7 (4+3)
IDC
Cribriform
EPE
.89 Decipher score

"Good News":
Clean margins, lymph nodes, seminal vesicles during surgery
Clean CPMSA PET scan on 8/25/25 (pre-surgery)

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for Jeff Marchi
Jeff Marchi | @jeffmarc | May 10 9:46pm
In reply to @clevelandguy "@jeffmarc Thats your choice, I don’t think I would radiate my pelvic area unless I know..." + (show)
Profile picture for clevelandguy @clevelandguy

@jeffmarc
Thats your choice, I don’t think I would radiate my pelvic area unless I know there is cancer to kill. There is a good possibility of damaging the bladder and colon. This is from Sloan Kettering:
“Radiation therapy can cause permanent urinary and bowel changes. Many people don’t notice any changes or have any symptoms. However, some people have late side effects.
Late side effects may be similar to the ones you had during treatment. There’s a very small chance you may develop other side effects. For example:
The opening of your bladder may become narrower.
You may lose your ability to control your bladder.
You may have blood in your urine.
You may have bleeding from your rectum.
Your rectum may be injured.
These side effects are rare. They may come and go over time or be persistent and chronic. Your healthcare team will help you manage them.” That’s great you did not have any long term problems but the radiation affects people differently. Just because you did not have any problems does not mean the next person will also not have any problems. Yes I am new to this site but have been on the American Cancer Society site for 11 yrs. I don’t know what you mean a large number will need extra radiation but on the ACS site many who posted that had surgery did not need extra radiation in the prostate bed. To each his own but 65% odds of the cancer not being there and let’s just radiate it anyway is iffy in my book. I will wait for it to show up in PET scan then spot radiate it. My body, my choice.

Dave 3+4

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@clevelandguy
This does answer that question for advanced cases, waiting is not the answer

Life expectancy for prostate cancer patients that ignore treatment
https://www.urotoday.com/recent-abstracts/urologic-oncology/prostate-cancer/168250-natural-history-of-untreated-prostate-cancer-a-comprehensive-review-of-long-term-progression-patterns-and-survival-outcomes-beyond-the-abstract.html
Grade Group 1 (Gleason 6) disease showed metastatic progression rates below 5% over 15–20 years and prostate cancer-specific mortality under 5% at two decades. These are the patients for whom active surveillance was designed, and this review provides robust quantitative backing for that approach. Conversely, Grade Groups 4–5 (Gleason 8–10) were uniformly lethal in conservatively managed cohorts: median time to metastasis was 3–5 years for Gleason 8 and just 1–3 years for Gleason 9–10, underscoring the urgency of early intervention for these men.

The intermediate grades deserve particular attention. The distinction between Gleason 3+4 and 4+3—both classified as "Grade Group 2–3" and both often lumped together as "intermediate risk"—carries meaningful clinical weight. Our synthesis found roughly 2–3 fold differences in 15-year progression rates (35% vs. 55%) and hazard ratios for cancer-specific death of 2.1–3.2 between these two patterns. Clinicians and patients should not treat these as equivalent.

REPLY
Profile picture for Jeff Marchi
Jeff Marchi | @jeffmarc | May 10 9:50pm
In reply to @clevelandguy "@jeffmarc Thats your choice, I don’t think I would radiate my pelvic area unless I know..." + (show)
Profile picture for clevelandguy @clevelandguy

@jeffmarc
Thats your choice, I don’t think I would radiate my pelvic area unless I know there is cancer to kill. There is a good possibility of damaging the bladder and colon. This is from Sloan Kettering:
“Radiation therapy can cause permanent urinary and bowel changes. Many people don’t notice any changes or have any symptoms. However, some people have late side effects.
Late side effects may be similar to the ones you had during treatment. There’s a very small chance you may develop other side effects. For example:
The opening of your bladder may become narrower.
You may lose your ability to control your bladder.
You may have blood in your urine.
You may have bleeding from your rectum.
Your rectum may be injured.
These side effects are rare. They may come and go over time or be persistent and chronic. Your healthcare team will help you manage them.” That’s great you did not have any long term problems but the radiation affects people differently. Just because you did not have any problems does not mean the next person will also not have any problems. Yes I am new to this site but have been on the American Cancer Society site for 11 yrs. I don’t know what you mean a large number will need extra radiation but on the ACS site many who posted that had surgery did not need extra radiation in the prostate bed. To each his own but 65% odds of the cancer not being there and let’s just radiate it anyway is iffy in my book. I will wait for it to show up in PET scan then spot radiate it. My body, my choice.

Dave 3+4

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@clevelandguy
Between 20 and 40% of the people that have prostatectomy have a reoccurrence. In the majority of those cases, no metastasis is found.

The American Society of clinical oncologist does not agree with you.

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/

REPLY
1 reply
Profile picture for clevelandguy
clevelandguy | @clevelandguy | May 11 6:39am
In reply to @jeffmarc "@clevelandguy Between 20 and 40% of the people that have prostatectomy have a reoccurrence. In the..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@clevelandguy
Between 20 and 40% of the people that have prostatectomy have a reoccurrence. In the majority of those cases, no metastasis is found.

The American Society of clinical oncologist does not agree with you.

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
Very simple, you look at what the experts say, talk with your doctor team and then you make a decision. It just makes sense to me to radiate an area that has detectable cancer vs radiating an area that could have cancer. My choice, you might choose differently.

REPLY
Profile picture for heavyphil
heavyphil | @heavyphil | May 11 6:43am
In reply to @clevelandguy "@jeffmarc Thats your choice, I don’t think I would radiate my pelvic area unless I know..." + (show)
Profile picture for clevelandguy @clevelandguy

@jeffmarc
Thats your choice, I don’t think I would radiate my pelvic area unless I know there is cancer to kill. There is a good possibility of damaging the bladder and colon. This is from Sloan Kettering:
“Radiation therapy can cause permanent urinary and bowel changes. Many people don’t notice any changes or have any symptoms. However, some people have late side effects.
Late side effects may be similar to the ones you had during treatment. There’s a very small chance you may develop other side effects. For example:
The opening of your bladder may become narrower.
You may lose your ability to control your bladder.
You may have blood in your urine.
You may have bleeding from your rectum.
Your rectum may be injured.
These side effects are rare. They may come and go over time or be persistent and chronic. Your healthcare team will help you manage them.” That’s great you did not have any long term problems but the radiation affects people differently. Just because you did not have any problems does not mean the next person will also not have any problems. Yes I am new to this site but have been on the American Cancer Society site for 11 yrs. I don’t know what you mean a large number will need extra radiation but on the ACS site many who posted that had surgery did not need extra radiation in the prostate bed. To each his own but 65% odds of the cancer not being there and let’s just radiate it anyway is iffy in my book. I will wait for it to show up in PET scan then spot radiate it. My body, my choice.

Dave 3+4

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@clevelandguy NO, it’s a 65% chance that cancer IS there…Even Dr Kwon, whom I do not agree with, says that SRT fails in ONE THIRD of all cases - so roughly 35%.
So the odds of cancer being in the pelvis are pretty high…
Phil

REPLY
1 reply
Profile picture for clevelandguy
clevelandguy | @clevelandguy | May 11 6:54am
In reply to @heavyphil "@clevelandguy NO, it’s a 65% chance that cancer IS there…Even Dr Kwon, whom I do not..." + (show)
Profile picture for heavyphil @heavyphil

@clevelandguy NO, it’s a 65% chance that cancer IS there…Even Dr Kwon, whom I do not agree with, says that SRT fails in ONE THIRD of all cases - so roughly 35%.
So the odds of cancer being in the pelvis are pretty high…
Phil

Jump to this post

@heavyphil
Again it’s my choice to radiate my bladder and colon with no medical scan evidence if I don’t want to. I will wait til it shows up on a scan. I know there is a chance cancer is present in very minute qty that does not show up on a scan. When Pca spreads it can also spread to your hips,ribs,shoulders ect. You just don’t radiate the entire body you wait til it shows up on a Pet scan then you radiate it. I like that approach👍.

Dave 3+4

REPLY
Profile picture for bikeman1
bikeman1 | @bikeman1 | May 11 7:57am

Thanks again for the input. I have decided that I want to get "treatment" as soon as possible and have asked for a PSMA-PET scan as soon as possible.
I am wondering why Dr. Nagur was so reticent to give his opinion and why, when pushed, he recommended a standard/basic treatment course (Orgovyx for 6 months and an unspecified course of radiation), when I don't have a "standard case" (I have IDC, Cribriform, EPE, GL 7(4+3)). In terms of urgency, he just said get the radiation done during the 6 month window of ADT.
My appointment with Dr. Greco at JH (where I will be treated) is 5/14. Should I push for hormone therapy right away? Or is the sRT the higher priority ? It will take a few weeks to get the results of the Decipher test on the prostate tissue, the ALTERA, and hopefully a PMSA-PET scan. Thanks as always

REPLY
2 replies
Profile picture for jim18
jim18 | @jim18 | May 11 8:44am
In reply to @clevelandguy "@jeffmarc Thats your choice, I don’t think I would radiate my pelvic area unless I know..." + (show)
Profile picture for clevelandguy @clevelandguy

@jeffmarc
Thats your choice, I don’t think I would radiate my pelvic area unless I know there is cancer to kill. There is a good possibility of damaging the bladder and colon. This is from Sloan Kettering:
“Radiation therapy can cause permanent urinary and bowel changes. Many people don’t notice any changes or have any symptoms. However, some people have late side effects.
Late side effects may be similar to the ones you had during treatment. There’s a very small chance you may develop other side effects. For example:
The opening of your bladder may become narrower.
You may lose your ability to control your bladder.
You may have blood in your urine.
You may have bleeding from your rectum.
Your rectum may be injured.
These side effects are rare. They may come and go over time or be persistent and chronic. Your healthcare team will help you manage them.” That’s great you did not have any long term problems but the radiation affects people differently. Just because you did not have any problems does not mean the next person will also not have any problems. Yes I am new to this site but have been on the American Cancer Society site for 11 yrs. I don’t know what you mean a large number will need extra radiation but on the ACS site many who posted that had surgery did not need extra radiation in the prostate bed. To each his own but 65% odds of the cancer not being there and let’s just radiate it anyway is iffy in my book. I will wait for it to show up in PET scan then spot radiate it. My body, my choice.

Dave 3+4

Jump to this post

@clevelandguy That is why everyone should get the Prostox test before prostate radiation to see if they fall into the 75% or 7% probability group of having late radiation side effects. Most of what determines who has bad aftereffects is genetics. A lot of the rest is bad targeting. All medical disclosures are written for lawyers by lawyers since non-disclosure even of a 1 in 10000 chance is opening them up for lawsuits (why a ladder is covered with warning stickers now).

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1 reply
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clevelandguy | @clevelandguy | May 11 9:23am
In reply to @jim18 "@clevelandguy That is why everyone should get the Prostox test before prostate radiation to see if..." + (show)
Profile picture for jim18 @jim18

@clevelandguy That is why everyone should get the Prostox test before prostate radiation to see if they fall into the 75% or 7% probability group of having late radiation side effects. Most of what determines who has bad aftereffects is genetics. A lot of the rest is bad targeting. All medical disclosures are written for lawyers by lawyers since non-disclosure even of a 1 in 10000 chance is opening them up for lawsuits (why a ladder is covered with warning stickers now).

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@jim18
The Prostox test would certainly help. Your comment about bad targeting is why I always say get the best doctors+best facilities=the best results.
Dave 3+4

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Profile picture for heavyphil
heavyphil | @heavyphil | May 11 1:17pm
In reply to @bikeman1 "Thanks again for the input. I have decided that I want to get "treatment" as soon..." + (show)
Profile picture for bikeman1 @bikeman1

Thanks again for the input. I have decided that I want to get "treatment" as soon as possible and have asked for a PSMA-PET scan as soon as possible.
I am wondering why Dr. Nagur was so reticent to give his opinion and why, when pushed, he recommended a standard/basic treatment course (Orgovyx for 6 months and an unspecified course of radiation), when I don't have a "standard case" (I have IDC, Cribriform, EPE, GL 7(4+3)). In terms of urgency, he just said get the radiation done during the 6 month window of ADT.
My appointment with Dr. Greco at JH (where I will be treated) is 5/14. Should I push for hormone therapy right away? Or is the sRT the higher priority ? It will take a few weeks to get the results of the Decipher test on the prostate tissue, the ALTERA, and hopefully a PMSA-PET scan. Thanks as always

Jump to this post

@bikeman1 There’s a lot of new revised thinking on the role of ADT. It is quite possible that 6 months is the absolute minimum (while getting SRT) and then you are monitored every 3 months for PSA rise.
After all, it IS the radiation that kills the PCa, so if all you need is the weakening effect of ADT during treatment, why sign up for long term ADT?
ADT is not going to kill cancer cells on its own, regardless of where they are, just keep them suppressed. Better to use it during radiation to the bed and pelvic nodes to, at least, help eliminate all the cancer cells there.
Any PSA rise after that indicates that cancer is also someplace else, so in that case you would wait for a PET scan to show it. Best,
Phil

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