Rising PSA's after treatment - an answer

Posted by dpcarriere @dpcarriere, May 12, 2022

First let me reintroduce myself. I'm one of the grade 10's. An aggressive 10 at that so I have to be on top of things - the alternatives aren't attractive. I've had Proton Beam Therapy with Lupron. Lupron prior to Proton Beam to lower tumor activity and continuing post to prevent reoccurance - just in case.

Now then - I've seen a lot of queries regarding PSA values after treatments, whatever the treatment is. The questions have been - what's a good value, or what's a bad value, or what do any changes mean?

Here's the bottom line. No two of us are alike. Thank God for that!! So no two tumors are alike either. This whole cancer treatment protocol is pretty much individual with some common threads. So the answer to PSA values as I understand the big picture is not one of specific values. Your PSA of 0.9 may be of some value to you but meaningless to me. What IS of value is a trend line. Spot numbers are of little to no value. What your physician is looking for is a trend line. PSA values over time are the numbers of consideration. Bye and large this is a slow growing tumor - which is why I'm still here and able to report in every now and then. Again, the answer is a TREND LINE. You will be alarmed when your PSA's are continuously rising. Else enjoy a scotch with me. Happy day.

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

I was diagnosed in 2014, the treatment I used was Focal Laser Ablation then followed up with Lupron 4 years later and Phoenix Tears and been on it ever since. My PSA has been climbing slowly and my urologist has suggested I may becoming castrate resistant and other medication which I don’t qualify for at the moment because my numbers are too low. PSA is .6. No mets my last 2 MRI’s indicated a PYRADS number of 3. Anyway I just wanted to ask if anyone out there had a similar situation and what drugs you used?
Thanks

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Yep, a single data point not a reason to hit the panic button. If that were the case I would have gone back on treatment several years ago.

I did not hit the panic button, neither did my urologist. Good decision.

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@kujhawk1978

Yep, a single data point not a reason to hit the panic button. If that were the case I would have gone back on treatment several years ago.

I did not hit the panic button, neither did my urologist. Good decision.

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This is a very very interesting and detailed timeline you provided.

I'm curious was your RP bilateral nerve sparing, unilateral nerve sparing, or non-nervesparing and what was the additional hit to your erectile and urinary function long-term after salvage RT?

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@consultant

This is a very very interesting and detailed timeline you provided.

I'm curious was your RP bilateral nerve sparing, unilateral nerve sparing, or non-nervesparing and what was the additional hit to your erectile and urinary function long-term after salvage RT?

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My RP was nerve sparing. I was on Cialis and gained erectile function around the 12 month point.

When the nurse pulled the catheter out after my RP, I had zero incontinence.

The SRT has had no affects on either erectile or urinary functions almost eight years after SRT.

Question is, why? In part, the skill of my surgeon, the radiologist and her team, the advances in the technology and software for planning and delivering radiation treatment.

Kevin

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@kujhawk1978

My RP was nerve sparing. I was on Cialis and gained erectile function around the 12 month point.

When the nurse pulled the catheter out after my RP, I had zero incontinence.

The SRT has had no affects on either erectile or urinary functions almost eight years after SRT.

Question is, why? In part, the skill of my surgeon, the radiologist and her team, the advances in the technology and software for planning and delivering radiation treatment.

Kevin

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Thanks for the quick reply. I am also lucky as my Urologist was at a center of excellence and world-renowned for his robotic surgery skills. 18 months later my erectile function is about 85-90% with no drugs and just about 100% with Cialis. I know I'm getting ahead of myself (which is easy to do with anyone experiencing a cancer diagnosis) but the reason for my curiosity is my uPSA was < 0.02 for 18 months and just today it came back =0.02 instead of < 0.02. I realize 0.03 is a more reliable early-sign of biochemical recurrence but I'm trying to mentally prepare. (History: pre-RP, 3+4 Gleason, 7 of 12 cores, tumor in the middle area instead of peripheral which typically has higher chance of cure but ironically higher PSA, mine was 29 (54 yo) so technically that alone classified me as "high risk." But post-RP Pathology was excellent. No extracapular extension, seminal vesicle invasion, no positive margins, and nothing in my extended lymph node removal. But there is such a thing as micrometastases.)

I moved out of state since the RP so I just was having my Primary Provider order the uPSA so the downside is I don't have a Urologist to give me a call to say, don't read too much into the test result change to try to calm my nerves.

I was just pondering long term if this wasn't just an anomaly in the test result what I'm in for down the road if it keeps going up. I'm also curious at what point does private insurance cover salvage RT? I hear Viewray went out of business so guided MRI is not an option right now, not that I'm anywhere close to needs that. But at least your story gives me comfort that sounds like worse-case in X years, I may need salvage RT and may just need to up my Cialis dose a bit.

Again, getting ahead of myself but needed to get this off my chest without any Urologist to talk to right now. I guess not at least starting a patient relationship when I moved wasn't wise but wishful thinking I'd never need one, at least for the PCA diagnosis, for the rest of my life.

Another issue is I'm on the most expensive private medical insurance plan you can buy in case I needed salvage RT. Was looking forward to downgrading from Platinum to Gold and save some money but now I'm thinking I should stay on Platinum even though on Gold out of pocket costs on PSA tests are $28 instead of $0. (My platinum plan covers all labs and imaging 100% regardless if deductible has been met.) But at my levels, I'm even wondering what is the chance I'd need salvage RT next year? Imaging is worthless at the lower PSA levels they generally recommend starting salvage RT at. I guess it's really a guess not knowing your velocity yet or if it was just an anomaly.

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@consultant

Thanks for the quick reply. I am also lucky as my Urologist was at a center of excellence and world-renowned for his robotic surgery skills. 18 months later my erectile function is about 85-90% with no drugs and just about 100% with Cialis. I know I'm getting ahead of myself (which is easy to do with anyone experiencing a cancer diagnosis) but the reason for my curiosity is my uPSA was < 0.02 for 18 months and just today it came back =0.02 instead of < 0.02. I realize 0.03 is a more reliable early-sign of biochemical recurrence but I'm trying to mentally prepare. (History: pre-RP, 3+4 Gleason, 7 of 12 cores, tumor in the middle area instead of peripheral which typically has higher chance of cure but ironically higher PSA, mine was 29 (54 yo) so technically that alone classified me as "high risk." But post-RP Pathology was excellent. No extracapular extension, seminal vesicle invasion, no positive margins, and nothing in my extended lymph node removal. But there is such a thing as micrometastases.)

I moved out of state since the RP so I just was having my Primary Provider order the uPSA so the downside is I don't have a Urologist to give me a call to say, don't read too much into the test result change to try to calm my nerves.

I was just pondering long term if this wasn't just an anomaly in the test result what I'm in for down the road if it keeps going up. I'm also curious at what point does private insurance cover salvage RT? I hear Viewray went out of business so guided MRI is not an option right now, not that I'm anywhere close to needs that. But at least your story gives me comfort that sounds like worse-case in X years, I may need salvage RT and may just need to up my Cialis dose a bit.

Again, getting ahead of myself but needed to get this off my chest without any Urologist to talk to right now. I guess not at least starting a patient relationship when I moved wasn't wise but wishful thinking I'd never need one, at least for the PCA diagnosis, for the rest of my life.

Another issue is I'm on the most expensive private medical insurance plan you can buy in case I needed salvage RT. Was looking forward to downgrading from Platinum to Gold and save some money but now I'm thinking I should stay on Platinum even though on Gold out of pocket costs on PSA tests are $28 instead of $0. (My platinum plan covers all labs and imaging 100% regardless if deductible has been met.) But at my levels, I'm even wondering what is the chance I'd need salvage RT next year? Imaging is worthless at the lower PSA levels they generally recommend starting salvage RT at. I guess it's really a guess not knowing your velocity yet or if it was just an anomaly.

Jump to this post

The standard and generally accepted definition of BCR for single decimal PSA tests is .2, with a 2nd PSA tests 90- days later of .3 or higher.

For USPSA, two decimal points, no such consensus exists. Add to that, the newer imaging generally cannot locate recurrence at the two decimal place whether it be .02 or .03.

You may want to check the NCCN guidelines for BCR and SRT, they are considered the SOC and insurance companies generally, sometimes with prodding, abide by them.

More and more. doublet and triplet therapy is mainstream clinical practice today, not monotherapy such as SRT to the prostate bed. Should you reach a point where treatment is needed by on clinical data - PSA tests, PSADT and PSAV, GS, imaging, any symptoms you are experiencing, I would discuss with my medical team as a minimum doublet therapy, some form of ADT combined with radiation. If for some reason that does not knock down the PSA, you can then add a triplet, ARI, Docetaxel...

For now, relax, enjoy life, actively monitor , develop and discuss decision criteria with your medical team.

Kevin

So, what to do?

My medical team and I had decision criteria:

No reacting to single lab results.
Any decision to image would require three or more consecutive increases in PSA, spaced 2-4 months apart with PSA between .5-1.0. Why you ask, greater than 60% chance of locating the recurrence.

In march of this year, that decision criteria was met, we imaged with Plarify, it showed a single PLN which we treated with SBRT. For the micro-metastatic disease, we added 12 months of Orgovyx, not Lupron. Why, well...
Lower CV SE profile.
Faster castration Higher sustained castration while on it.
Faster return of T when stopping.

PSA tests can vary even if you use the same labs, they don;t change the assay method, follow TMDE calibration requirements...same pre-test routine...That's why my decision criteria was 2-4 months apart. If a lab showed an "increase," we tested again in two months, if it "decreased" or stayed the same, we tested in four months.

Interesting, even while on Orgovyx and T< 9 which is the lowest my lab can measure, I can still achieve erections, though with physical stimulation, not just visual. This of corse dismays my wife, but, that's a different doctor...

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There's some more recent studies that show going before 0.2 has statistically better outcomes. Strangely one report cites an average SRT PSA of 0.08? Huh? Did these guys pay out of pocket or was this that low because they were doing ADT just prior? (I don't have the time right now to go over the report with a fine tooth comb I'll see if I can find the URL.)

I think it's safe to say doing SRT before 0.1 would be "aggressive" and "problematic" with the insurance company is my guess. Edit: Scratch that statement. Getting confirmation from multiple people SRT at < 0.1 should not be a problem with insurance. Looking at some graphs of studies showing PSA progression in cases of BCR after RP, if one is undetectable < = 0.03 the first year, although of course it varies between individuals, getting to 0.1 let alone 0.2 is very very unlikely going to happen in a year. Even at very short 4-month doubling time, for one year. a 0.02 would only end up at 0.08 after a year. So suffice to say, I've got a long time to think about things even if it comes to that.

REPLY
@kujhawk1978

The standard and generally accepted definition of BCR for single decimal PSA tests is .2, with a 2nd PSA tests 90- days later of .3 or higher.

For USPSA, two decimal points, no such consensus exists. Add to that, the newer imaging generally cannot locate recurrence at the two decimal place whether it be .02 or .03.

You may want to check the NCCN guidelines for BCR and SRT, they are considered the SOC and insurance companies generally, sometimes with prodding, abide by them.

More and more. doublet and triplet therapy is mainstream clinical practice today, not monotherapy such as SRT to the prostate bed. Should you reach a point where treatment is needed by on clinical data - PSA tests, PSADT and PSAV, GS, imaging, any symptoms you are experiencing, I would discuss with my medical team as a minimum doublet therapy, some form of ADT combined with radiation. If for some reason that does not knock down the PSA, you can then add a triplet, ARI, Docetaxel...

For now, relax, enjoy life, actively monitor , develop and discuss decision criteria with your medical team.

Kevin

So, what to do?

My medical team and I had decision criteria:

No reacting to single lab results.
Any decision to image would require three or more consecutive increases in PSA, spaced 2-4 months apart with PSA between .5-1.0. Why you ask, greater than 60% chance of locating the recurrence.

In march of this year, that decision criteria was met, we imaged with Plarify, it showed a single PLN which we treated with SBRT. For the micro-metastatic disease, we added 12 months of Orgovyx, not Lupron. Why, well...
Lower CV SE profile.
Faster castration Higher sustained castration while on it.
Faster return of T when stopping.

PSA tests can vary even if you use the same labs, they don;t change the assay method, follow TMDE calibration requirements...same pre-test routine...That's why my decision criteria was 2-4 months apart. If a lab showed an "increase," we tested again in two months, if it "decreased" or stayed the same, we tested in four months.

Interesting, even while on Orgovyx and T< 9 which is the lowest my lab can measure, I can still achieve erections, though with physical stimulation, not just visual. This of corse dismays my wife, but, that's a different doctor...

Jump to this post

Found the study citing 0.08. I'm still thinking this has to be a misprint? Maybe not:

Pubmed 36765111

"Of those with a delayed detectable PSA, 46% underwent salvage treatment within 10 years after RP at a median PSA of 0.08 ng/mL"

That's got to be 0.8 not 0.08? But I guess they key here is it's 46%. So it that the average of the 46% with the lowest median PSA?

What's funny is the conclusion is not advocating SRT!?

"Men who develop a detectable PSA > 6 months post-operatively may have excellent long-term outcomes, even in the absence of salvage therapy."

But an "excellent long-term outcome" for most is basically not dying of PCa. If you have Gleason 7 at age 53, it's a different long term risk than having it at age 73.

REPLY
@kujhawk1978

The standard and generally accepted definition of BCR for single decimal PSA tests is .2, with a 2nd PSA tests 90- days later of .3 or higher.

For USPSA, two decimal points, no such consensus exists. Add to that, the newer imaging generally cannot locate recurrence at the two decimal place whether it be .02 or .03.

You may want to check the NCCN guidelines for BCR and SRT, they are considered the SOC and insurance companies generally, sometimes with prodding, abide by them.

More and more. doublet and triplet therapy is mainstream clinical practice today, not monotherapy such as SRT to the prostate bed. Should you reach a point where treatment is needed by on clinical data - PSA tests, PSADT and PSAV, GS, imaging, any symptoms you are experiencing, I would discuss with my medical team as a minimum doublet therapy, some form of ADT combined with radiation. If for some reason that does not knock down the PSA, you can then add a triplet, ARI, Docetaxel...

For now, relax, enjoy life, actively monitor , develop and discuss decision criteria with your medical team.

Kevin

So, what to do?

My medical team and I had decision criteria:

No reacting to single lab results.
Any decision to image would require three or more consecutive increases in PSA, spaced 2-4 months apart with PSA between .5-1.0. Why you ask, greater than 60% chance of locating the recurrence.

In march of this year, that decision criteria was met, we imaged with Plarify, it showed a single PLN which we treated with SBRT. For the micro-metastatic disease, we added 12 months of Orgovyx, not Lupron. Why, well...
Lower CV SE profile.
Faster castration Higher sustained castration while on it.
Faster return of T when stopping.

PSA tests can vary even if you use the same labs, they don;t change the assay method, follow TMDE calibration requirements...same pre-test routine...That's why my decision criteria was 2-4 months apart. If a lab showed an "increase," we tested again in two months, if it "decreased" or stayed the same, we tested in four months.

Interesting, even while on Orgovyx and T< 9 which is the lowest my lab can measure, I can still achieve erections, though with physical stimulation, not just visual. This of corse dismays my wife, but, that's a different doctor...

Jump to this post

Oh early on in all my research I read about Orgovyx. It seemed like a no brainer except wasn't sure if insurance was going for it shortly after approved due to the cost? But because of all the benefits you mentioned, including pill instead of shot, it seems like you could make a compelling case to get approval.

I've heard horror stories on the low-T side effects - hot flashes, no strength/energy, muscle wasting, erectile dysfunction. On the other hand I heard other people made it a point to be in best shape possible before, do strength training and keep exercising, which sounded like it mitigated the side effects to an extent. Plus as you point out since the onset/offset is so rapid you therefore can rebound back to 'normal' from it more quickly.

That's an interesting decision point Oncologists have to grapple with. Let PSA go up to detect where the cancer is versus early pelvic radiation to try to prevent metastases in the first place.

REPLY
@consultant

Found the study citing 0.08. I'm still thinking this has to be a misprint? Maybe not:

Pubmed 36765111

"Of those with a delayed detectable PSA, 46% underwent salvage treatment within 10 years after RP at a median PSA of 0.08 ng/mL"

That's got to be 0.8 not 0.08? But I guess they key here is it's 46%. So it that the average of the 46% with the lowest median PSA?

What's funny is the conclusion is not advocating SRT!?

"Men who develop a detectable PSA > 6 months post-operatively may have excellent long-term outcomes, even in the absence of salvage therapy."

But an "excellent long-term outcome" for most is basically not dying of PCa. If you have Gleason 7 at age 53, it's a different long term risk than having it at age 73.

Jump to this post

Eh, not a misprint. Just chatted with another PCa survivor who did his SRT at 0.05.

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