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Recurrence Post RALP: Did a second opinion change your plan?

Posted by dhasper @dhasper, Mar 31 12:11pm

Hi all,

I’m looking for some perspective as I work through the next steps after prostatectomy.

**Brief background:**

* Age 67
* Radical prostatectomy: August 2025
* Pathology: Gleason 4+3 (Grade Group 3), ~80% pattern 4
* Cribriform and intraductal features present
* Extraprostatic extension (pT3a) and lymphovascular invasion
* Negative margins, lymph nodes negative
* PSA: 0.10 about 3 months ago → 0.17 this week

**Current situation:**
I’m being followed at a major center and have PET and MRI pending.

The main question I’m trying to think through is what to do **if imaging is negative**.

Specifically:

* Whether to proceed with **early salvage radiation** vs continued monitoring
* Whether to include **pelvic nodes vs prostate bed only**
* Role and duration of **ADT in this setting**

Given my pathology (cribriform/intraductal, LVI, etc.) and the PSA trend, I’m concerned about missing the optimal window for treatment if I wait too long, especially since I may be a lower PSA producer.

I did ask about genomic testing (Decipher) and was told it’s not necessary at this point.

After thinking this through, I realize I would be uncomfortable if the recommendation were to wait for something to declare itself on imaging. Because of that, I’m wondering whether I should start the process of getting a second opinion now, or wait until imaging results are back.

**My question:**
For those who have been in a similar situation (especially with higher-risk features but low PSA), how did your team approach:

* Timing of salvage radiation
* Field selection
* Use of ADT

Also—did anyone pursue a second opinion between major centers, and did that change your plan?

Appreciate any perspectives or experiences.

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

Profile picture for heavyphil
heavyphil | @heavyphil | Apr 10 7:58am
In reply to @klein505 "I listened to one of Dr Kwon's videos recently, in which he says that you should..." + (show)
Profile picture for Mrs K @klein505

I listened to one of Dr Kwon's videos recently, in which he says that you should not start radiation until you are absolutely sure what type of recurrence you have.

I can't post a link, but it's on youtube: Prostate Cancer Recurrence, DIY Combat Manual for beating Prostate Cancer, part 2
At about 4:12

This drives me nuts, because you want to treat asap, but you're stuck in a situation where your PSA is rising, but the most sensitive test (PSMA) can't reliably determine where your recurrence is coming from. From what I've read the old Choline tests are even less sensitive, is that true?

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@klein505 Totally agree with you! Dr Kwon often seems to contradict himself - and others.
I know he is a supposed ‘expert’ but I think SRT is the very LEAST you should do when the PSA hits 0.2.
You can always zap larger metastases if they show up later with SBRT; but if you don’t treat - and wait for visible PET - the cancer could become widely disseminated and doom you to a lifetime of ADT.
Many men are on it, but why put yourself in that position?
Phil

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2 replies
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dhasper | @dhasper | Apr 10 10:01am
In reply to @heavyphil "@klein505 Totally agree with you! Dr Kwon often seems to contradict himself - and others. I..." + (show)
Profile picture for heavyphil @heavyphil

@klein505 Totally agree with you! Dr Kwon often seems to contradict himself - and others.
I know he is a supposed ‘expert’ but I think SRT is the very LEAST you should do when the PSA hits 0.2.
You can always zap larger metastases if they show up later with SBRT; but if you don’t treat - and wait for visible PET - the cancer could become widely disseminated and doom you to a lifetime of ADT.
Many men are on it, but why put yourself in that position?
Phil

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@heavyphil Yes I listened to it and this was 4 years ago and he was speaking generically. I certainly would not accept this approach with my early recurrence, biology and what seems to be a fast doubling time.

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Mrs K | @klein505 | Apr 10 10:57am
In reply to @heavyphil "@klein505 Totally agree with you! Dr Kwon often seems to contradict himself - and others. I..." + (show)
Profile picture for heavyphil @heavyphil

@klein505 Totally agree with you! Dr Kwon often seems to contradict himself - and others.
I know he is a supposed ‘expert’ but I think SRT is the very LEAST you should do when the PSA hits 0.2.
You can always zap larger metastases if they show up later with SBRT; but if you don’t treat - and wait for visible PET - the cancer could become widely disseminated and doom you to a lifetime of ADT.
Many men are on it, but why put yourself in that position?
Phil

Jump to this post

@heavyphil Thanks for your reply - I get so bogged down trying to get up to speed on all the different studies / videos, I am in danger of missing the forest for the trees. Avoiding dissemination is a priority endpoint!

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Jeff Marchi | @jeffmarc | Apr 10 11:05am
In reply to @diverjer "Not sure why but they did some genetic test on me, tested 85 genes. All seemed..." + (show)
Profile picture for diverjer @diverjer

Not sure why but they did some genetic test on me, tested 85 genes. All seemed fine except one and they aren't concerned about it. Don't know if this really means anything. Short version of 9 page report.
Report says:
Your hereditary cancer genetic test results are back. Your results showed one variant of uncertain significance (VUS). You can see your results in your chart, and I’ve attached a copy to this message. You can find more details about your results and next steps below.

Variants of Uncertain Significance Gene
Everyone has small changes in their DNA, called variants. Most of these changes are normal and do not cause cancer or other diseases. Sometimes, a DNA change is called a variant of uncertain significance (VUS). This means that scientists aren’t sure yet if the change is harmful or not. As more people get tested and more research is done, scientists may learn more about the variant. Over time, a VUS can be reclassified. About 90% of VUS results are later found to be benign, meaning they do not increase the risk of cancer.

This result means we currently have no hereditary genetic explanation for your or your family's cancer history.

Results
No pathogenic (cancer-causing) mutations were identified from the genetic testing; however, one or more variants of uncertain significance were identified.

Variant of uncertain significance (VUS): No clinical action should be taken solely based on a VUS, clinical management should be based on personal and family history.

5 labs have reported this variant in Clinvar- 4 labs including Ambry currently classify as a variant of uncertain significance. 1 lab, Invitae, currently classifies this variant as likely benign.

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@diverjer
While the gene is considered VUS did they say which one it was? Knowing which one it was, could allow you to look for future significance.

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diverjer | @diverjer | Apr 10 11:45am

Yes, it was NF1. I looked it up and don't have anything that it mentions. However, I just a almost 79 year old youngster- there still time. I researched how they do these test and find it a computer that does the analysis, you can't trust those computer programmers:)

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2 replies
Profile picture for Jeff Marchi
Jeff Marchi | @jeffmarc | Apr 10 12:03pm
In reply to @diverjer "Yes, it was NF1. I looked it up and don't have anything that it mentions. However,..." + (show)
Profile picture for diverjer @diverjer

Yes, it was NF1. I looked it up and don't have anything that it mentions. However, I just a almost 79 year old youngster- there still time. I researched how they do these test and find it a computer that does the analysis, you can't trust those computer programmers:)

Jump to this post

@diverjer
Weird, that mutation doesn’t seem to be nothing. If someone gets prostate cancer, the following information about that gene seems to be that it’s problematic.

The mutation stops the body from producing functional neurofibromin, leading to uncontrolled cell growth and tumor formation.

Who knows. The people reviewing the results definitely thought it was nothing.

Maybe it’s just a football issue, I thought it said NFL till I looked closer.

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jim18 | @jim18 | Apr 10 9:56pm
In reply to @diverjer "Yes, it was NF1. I looked it up and don't have anything that it mentions. However,..." + (show)
Profile picture for diverjer @diverjer

Yes, it was NF1. I looked it up and don't have anything that it mentions. However, I just a almost 79 year old youngster- there still time. I researched how they do these test and find it a computer that does the analysis, you can't trust those computer programmers:)

Jump to this post

@diverjer Do not be concerned. The computer programmers do not do that work anymore. That is now done by Claude, Grok, or HAL.

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1 reply
Profile picture for Jeff Marchi
Jeff Marchi | @jeffmarc | Apr 11 10:39am
In reply to @jim18 "@diverjer Do not be concerned. The computer programmers do not do that work anymore. That is..." + (show)
Profile picture for jim18 @jim18

@diverjer Do not be concerned. The computer programmers do not do that work anymore. That is now done by Claude, Grok, or HAL.

Jump to this post

@jim18
What the HAL!!!

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