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

@mlabus3
I am very grateful for you insights and for sharing info about possible plan for salvage RT. My husband has uPSA that is slowly creeping up and depending of results that his next uPSA tells us, there will be talks about possible early salvage RT. His last uPSA was 0.026 but the first post op uPSA was 0.014 , so something might be brewing there (or not). He also had large cribriform, IDC and Decipher 1, and all of that makes me very nervous ( read freaking out).

There is a study from 2011 that claim that uPSA does not have the same predictive value as does regular PSA and it's doubling time so it gives me some comfort. BUT, with such high risk features one can not relax, no matter what.

My husband was considering adjuvant RT but was advised by surgeon and MO to wait and see how his PSA would behave and to give his body time to heal from surgery which we think was a good advice because he regained full continence.

His salvage would also be IMRT and his center also does not have Meridian (?) machine but RO is well known and probably would make a good plan.

Do you know if they will insert gold fiduciary markers inside your body and if they plan to use gel spacer for colon ?

Once again, thanks for all the help and info < 3.

PS: If you have any links for relevant research papers or results would you be so kind to attach them for me to read 🙏.

@jeffmarc — thanks, that was helpful.

Just to clarify, I’ve already had RALP, so my question is really about **timing of salvage**, not adjuvant therapy.

At this point, with a rising PSA, I’m assuming I’m in early recurrence. The questions I’m trying to think through are:

* If PSMA PET is negative, should I proceed with early salvage radiation rather than wait?
* How should field selection be approached (prostate bed vs pelvic nodes)?
* What role and duration of ADT makes sense in this setting?

It doesn’t seem like there’s a single clear answer. On one hand, treating early may offer the best chance of control given my pathology. On the other, there’s the risk of treating more broadly without knowing exactly where disease is.

Balancing that uncertainty—especially with negative imaging—is what I’m trying to sort through. That’s also why I’m considering a second opinion, just to make sure I’m approaching this correctly.

Appreciate any additional thoughts.

Happy to share what I know, or think I know. I got a Decipher before and after, which was helpful, i think. My Decipher went from .93 to .75 - still high risk, but a little comfort. Also went from Luminal Proliferating to Basal Immune, a more favorable type of cancer. They say that the difference is because they are working with the actual tumor after surgery, as opposed to a microslice in a biopsy. I had to talk my RO into it, but i think it was worth it. Doesnt change the treatment plan, but i feel better!

Not sure I would trust a 2011 study on uPSA, there must be more current ones. but i think there is less precision and more grey area in uPSA. Your still under .05, which is where they indicate you might want to start salvage.

I also got an artera ai test, where is showed me "low risk". go figure. thats a new AI-based test that rolls up everything they know about prostate cancer, all the studies and spits out a risk factor based on all that. Its pretty new, and not sure what to make of it.

I am not sure about the type of radiation, (im using Johns Hopkins) they dont have the MRI guided treatment either. although they say that the MRI precision isnt as valuable in salvage as it is in with the prostate intact. And frankly i dont know if i can lay in a MRI for an hour at a time! And they apparently can overlay the MRI into the CT scan. Still not real time, but better.

Its scary, and the thought of long term hormones and weeks of radiation is not comforting. But it beats the alternative. im just hoping for low side effects. Pretty confident that this will wipe it out. im still at the very beginning, but happy to continue sharing what i learn.

@surftohealth88 They usually don’t use fiducials since SRT is not very targeted as SBRT would be…daily cone beam (similar to CAT) before treatment verifies position of bed, bladder, rectum, etc.
My RO said no spacer allowed since rogue PCa cells might be close to rectum; don’t want to block those from being hit.
As has been said in other posts, the ‘simulation’ visit, where you are given water to drink (after emptying the bladder) so they - and you! - get an idea of how much to drink and how long it takes to reach the bladder to fill it to the max, is very important.
This will tell you how much and how far in advance of your daily session you need to drink in order to get that bladder to swell.
Also, your husband will take an enema before the simulation, so the rectum is empty and narrow in diameter.
This allows the radiation software to ‘shape’ the beam around it, hitting it 360 degrees; so the radiation gets close!
These 3D measurements (full bladder/empty rectum) are integrated into the treatment software and will be used DAILY during treatment.
If the cone beam pre-treat scan shows any deviation from these set parameters - ie. Bladder not full enough or rectum distended - treatment will be delayed or sometimes even cancelled. We call it ‘being kicked off the table’. One time they said I had a huge gas bubble (felt nothing) and they told me to walk around, do jumping jacks - anything to get it to move…nothing worked until they finally handed me a Fleet Enema and that did the trick.
In fact, I started carrying one of my own since radiation dept had to get an RX from the RO to get me one…took 45 minutes to do that!
So my 20 min visit turned into almost 2 hours😩
Phil

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?

@klein505 Yes that is my concern as before my RALP my PSA was 2.5 and my psma number was a 1. So sitting around waiting for PSMS detection seems really dangerous.

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.