Worth fighting for Decipher and PET/C... - Advanced Prostate...

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Worth fighting for Decipher and PET/CT PSMA?

JPnSD profile image
15 Replies

As a 67-year-old, post RP (8/2019) with 1 lymph node positive, whose PSA has gone from undetectable < .01 to .08 in last eight months, I am getting a new URO this Friday. Previous URO and MO said wait for ADT/EBRT after hitting PSA 1. My plan is to ask for Decipher testing of original tumor tissue and a PSMA PET/CT scan at this time in order to make an informed decision for next steps while waiting to get to 1. I will probably end up paying for both the Decipher and PSMA out-of-pocket as my insurance is known for tight pockets. Is it worth the expense and fight for the information I could get? I feel like I need more info before they subject me to more treatments from "standard" bag of tricks. Many thanks.

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JPnSD
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15 Replies

Not sure regarding Decipher, but very positive regarding PSMA PET/CT.

From this study:

"Treatment Outcomes from 68Ga-PSMA PET/CT–Informed

Salvage Radiation Treatment in Men with Rising PSA After

Radical Prostatectomy: Prognostic Value of a Negative

PSMA PET" (2017)

"Conclusion: PSMA PET is independently predictive of treatment

response to SRT and stratifies men into a high treatment

response to SRT (negative or fossa-confined PSMA) versus men with

poor response to SRT (nodes or distant-disease PSMA). In particular,

a negative PSMA PET result predicts a high response to salvage

fossa radiotherapy."

The usual argument that you will hear from drs, is that the detection rate of PSMA, while on a low PSA, renders the test worthless. This is a deceivingly false argument and usually uttered by these old school drs that have "one cure for all" in their tool chest. Personalized patient management is not their field of excellence.

My personal understanding of the matter:

There is a school of thought that GS >= 7b (4+3) has already metastasized, but the present imaging equipment can't detect it. A negative PSMA PET/CT being the most sensitive detection test available today gives us the info that the suspected metastasis is in its early stages, most probably local and salvage RT can have a higher success rate than the 50-50% of a blind coin toss. In the case of a positive detection, then the patient must have to find a dr that knows how to use the extra info in favour to the patient. Not an easy task IMO.

JPnSD profile image
JPnSD in reply to

Much appreciated.

Tall_Allen profile image
Tall_Allen

The PSMA scan will not be covered and is very unlikely to tell you anything useful at your low PSA. Decipher tells you the risk that it will metastasize, but it has already metastasized - so what use is it?

My opinion is, with a positive lymph node, what more info do you need? To my way of thinking, that is a certain indicator that whole pelvic salvage radiation with 2-3 years of ADT is required to cure you. Once the cancer has changed into the kind that can live in a lymph node, it is capable of moving and growing anywhere. The pelvic lymph nodes give you a last chance at a cure because the cancer may travel slowly through that drainage area (lymph, unlike blood, is not propelled by heart contractions and can sort of hang around for a while).

JPnSD profile image
JPnSD in reply toTall_Allen

The analyst for the pathology referred to "microscopic presence" in the lymph node. Might that have been just cells that were filtered from lymph (from surgery?) as opposed to " living" in the node? Seminal vesicles were clean (Stage 3). Just wondering if a Stage 2 got read as a Stage 4 just due to this type of scenario. So confusing the previous Uro and MO both wanted to wait to treat. Thanks for your feedback.

Tall_Allen profile image
Tall_Allen in reply toJPnSD

I'm sorry, but that sounds like a lot of wishful thinking to me.

JPnSD profile image
JPnSD in reply toTall_Allen

Yes, fear does that to one. I appreciate the honesty. Thanks.

Unfortunately a tuff cancer takes the hammer to put it down. All treatments diminish us. But APC will kill us dead if we take our eyes off of it . No choices without consequences. I’d listen to T_A on this one and stomp it out now if you can . We are Not doctors . Follow your dr if you trust them . If not get a second opinion . My advice is to not dilly dally around. Just another opinion . Good luck 👍

Gemlin_ profile image
Gemlin_

The Horse is at the Stable Door. Cure could still be possible and it would be a combination of local (SRT) and systemic therapy (ADT). I can't see how further testing would change anything.

timotur profile image
timotur

JPn: If the LN+ was removed at RP, then you are starting with a blank sheet of paper. If that's the case, it's likely a new met would also be in a nearby LN to the first one, but not with certainty. Then a scan would be in order to determine if there is a met outside the pelvic region, but not until you reach PSA around 1.0 to be detectable with a reasonable chance by PSMA, as your Dr suggested. On Decipher, I would hold off and use that as an indicator down the road of whether to do chemo or not, if that question arises and you are still M0.

JPnSD profile image
JPnSD in reply totimotur

Thank you. I appreciate the feedback.

fluffyfur profile image
fluffyfur

We just faced a similar situation. My husband had RP 5/2019, pos margins and ECE G7 but rising PSA. We consulted with two respectable RO's, one at UCLA and both advised against the PSMA scan, saying we probably are wasting our money at a PSA of .2 of picking up anything meaningful. So we are moving forward with radiation. Would getting it change your treatment plan? If so how? Sounds like you need ADT and SRT. Why are they waiting for your PSA to get to 1 though before doing anything? Maybe get a second opinion from another RO. We did that via telemedicine.

JPnSD profile image
JPnSD

Thank you. No substitute for real life experiences. Much appreciated.

Blackpatch profile image
Blackpatch

Just to put a slightly contrary view... I think it depends on how well you can afford these two tests.

TA is correct that you need eSRT +ADT, and that they offer your only hope of either a cure or an extended period before starting LT ADT if you don’t get the cure.

But if $ aren’t an issue, the PSMA PET can offer you peace of mind if it sees nothing ( likely) or improved targeting if it does. And Decipher can offer you a view on how much trouble you’re in if you don’t get it all, plus a 25% shot at learning you have a high PORTOS score and so have a better shot at a good eSRT outcome.

PSMA PET is very cheap in Australia so I did it before RRP and then before (and after) eSRT - never saw a thing on any scam, but that’s cool - my Decipher of 0.91 is bad news, so I need all the good scans I can get😀... and I was lucky enough to have a very high PORTOS too...

Final comment would be that you’d be ill advised to hesitate - get the eSRT now, there is no reason to wait. You have BCR and your chance of a cure falls with rising PSA, even down where you are, from everything i’ve read.

Good luck

Stuart

MateoBeach profile image
MateoBeach

In your situation I would get

A PSMA PET scan as a baseline and then go quickly to the extended SRT with pelvic LN fields well covered too. This with ADT, though I am not so sure 6 months may be sufficient with the low PSA and low volume disease. Maybe 1-2 years to be safer.

I had PSMA PET at UCLA at PSA of 0.24 and it showed me 2 Pelvic LNs positive. I treated my pelvis on that side with boost to the clearly identified nodes. Now 6 months later PSA around 0.138 and drifting down slowly. A repeat PSMA Scan with DFGPyL last weak showed one node gone and the other smaller and weaker PSMA Uptake by half the SUVmax. And no new sites. So this information is very useful to compare over time is my point. Negative information is useful too.

Move on it. Kill the Beast if you can! Best regards, Paul

MNFarmBoy profile image
MNFarmBoy

Considering the following previous reply from Tall_Allen, it is surprising that anyone involved in follow-up for patients who have had RP for PC would advise waiting for PSA to increase to 1 before commencing SRT; it sounds like the trigger point is now PSA of 0.1, and had been 0.2 for awhile before that:

"... 0.2 is no longer the benchmark. Things have changed because of the presentation of data from the RADICALS randomized clinical trial in October 2019. It found that 3 consecutive uPSA rises or a PSA of 0.1 is as good as immediate (adjuvant) radiation.

(PSADT is not defined for PSAs below 0.1):

pcnrv.blogspot.com/2019/09/...

prostatecancer.news/2019/09...

Can you safely wait for your PSA to reach 0.2? Who knows?"

URL for the above:

healthunlocked.com/prostate...

(There has also been a lot of discussion regarding whether ADT has any benefit at PSA ~0.1-0.2, but perhaps ADT should be included if there is evidence of lymph node involvement.)

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