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The Decipher RP test and insurance

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Posted 7/24/2020 2:30 PM (GMT 0)
Waiting for the results of my post-RP path report back in 2016, I had been perusing the Forums and decided I wanted to do the Decipher test on my RP tissue. I had a G10 biopsy, was quite concerned what the future held, and figured I could use all the help/knowledge I could get.

After I got the good news that I was G9 (4+5), pT2 with negative margins, I was naturally somewhat relieved, but was waiting to hear what my risk for mets was. I had a nagging suspicion that BCBS of NC might not pay with a very good post-op path, so even before I got my path report, I emailed with the GenomeDx, who makes the test, and worked out a (very) small out-of-pocket fee (which has since gone up) that I could pay if the test was ordered and my insurance declined payment. At my reqest, my doc ordered the test and, sho' 'nuf, after a few weeks called (rather surprised) to say that the test wasn't run. BCBS had declined to pay because I was "no longer high risk." This is nonsense, of course: high-grade men (as defined by the D'Amico classification) remain at increased risk for BCR and clinical recurrence -- I wasn't having a PSA test every 3 months for the fun of it. I called GenomeDx and paid the agreed fee. Tissue was shipped to them and a few weeks later I got my Decipher result (fortunately low risk!).

So all this time I've been annoyed at BCBS for not covering the test, assuming that other insurers, like Medicare, would have paid. Wrong! Today, searching for something else about the Decipher test, I came across the Decipher requisition form. The "MEDICARE INDICATIONS FOR DECIPHER PROSTATE RP" section lists several conditions that all have to be met for coverage (at least as of 2019, the copyright date on the form). The adverse pathology clause states:

"Patient’s surgical pathology report or medical records must have documented presence of adverse pathology:
ƒ Pathological stage T2 disease with a positive surgical margin, or
ƒ Pathological stage T3 disease (e.g., extraprostatic extension, seminal vesicle invasion, bladder neck invasion), or
ƒ Rising PSA after initial PSA nadir"

Notwithstanding my G9 status, I was pT2 R0, so according to this form Medicare would not have paid either (at least not unless my PSA rose). Moral of my story: I should expand the range of my ire smile

Djin[img]
Posted 7/24/2020 3:25 PM (GMT 0)
If your D score was high risk, private insurers would not have covered ART with a clean T2. Some won’t cover ART with non detectable T3.
Posted 7/24/2020 4:25 PM (GMT 0)

Duck2 said...
If your D score was high risk, private insurers would not have covered ART with a clean T2. Some won’t cover ART with non detectable T3.

I would not have done adjuvant with only a high Decipher score (without a rising PSA). AFAIK, D'amico doesn't advise it. I'll ask my doc next visit about this at my next visit, but I'll be surprised if he says yes.

On the flip side, when I read D'amico advocates adjuvant with even ONE major post-op adverse finding in G9-10 men, I asked my doc if I had had ONLY lymphovascular invasion within the prostate, would he have advised that I have adjuvant RT? Without missing a beat he said yes. Quite a few researchers have been lamenting that only a small percentage of men who should clearly be having adjuvant are doing so.

I'd be very interested to hear from any guy who was pT2 R0 with a very low uPSA did adjuvant therapy (RT and/or ADT) solely on the basis of a high Decipher score (or who would have but for denied insurance coverage).

One recent study said that Gleason score wasn't a specific risk factor for the 6-8% of pT2 R0 men who encounter BCR (if I remember correctly the percentage of positive biopsy cores was).

Genomic testing is new, and it hasn't really been fully integrated into the best-practices flowcharts, mainly for a lack of long-term data.

Djin

Post Edited (DjinTonic) : 7/24/2020 11:05:07 AM (GMT-6)

Posted 7/24/2020 7:28 PM (GMT 0)
So bottom line...after all that...how are you doing health wise...excluding mind...I mean how does the body feel like now...ok...now lets put the mind fore front...how does the mind feel like now...it is not a trick question or answer...and I ask with good intent...btw your sign is not showing and is that your intent?...if so why...umm...with your permission...
Posted 7/24/2020 8:02 PM (GMT 0)
My mind is doing great, thanks for asking! I'm as intellectually active as ever. Healthwise, generally pretty good.

How one thing leads to another: about 6 months ago I mentioned to my internist that I had an off-an-on slight cough for some months that was just clearing up. He asked me (seriously) if I wanted to do a chest X-Ray to rule out some things. I laughed and said "You tell me -- you're the doctor!" But a radiology practice is right next door, so I said yes and we did chest films. They came back negative for any lung issues, but the report noted some areas of osteopenia. I mentioned this to my doc, who said flat films are really not very good for diagnosing that; you need a bone density test to tell, which I then did. It can back with two areas of osteopenia and one of slight osteoporosis. So he started me on Fosamax. He said my bone density could be stable, but if we wait the 2 years and the next density test comes back worse, we'd be behind the curve and playing catch up. But I have no symptoms or history of bone breaks or fractures.

Djin
Posted 7/25/2020 12:39 AM (GMT 0)
good on ya...its good to stay ahead of bone stuff...courage...the ability to do what one does not want to do...
Posted 7/25/2020 1:11 AM (GMT 0)

DjinTonic said...

Duck2 said...
If your D score was high risk, private insurers would not have covered ART with a clean T2. Some won’t cover ART with non detectable T3.

I would not have done adjuvant with only a high Decipher score (without a rising PSA). AFAIK, D'amico doesn't advise it. I'll ask my doc next visit about this at my next visit, but I'll be surprised if he says yes.

On the flip side, when I read D'amico advocates adjuvant with even ONE major post-op adverse finding in G9-10 men, I asked my doc if I had had ONLY lymphovascular invasion within the prostate, would he have advised that I have adjuvant RT? Without missing a beat he said yes. Quite a few researchers have been lamenting that only a small percentage of men who should clearly be having adjuvant are doing so.

I'd be very interested to hear from any guy who was pT2 R0 with a very low uPSA did adjuvant therapy (RT and/or ADT) solely on the basis of a high Decipher score (or who would have but for denied insurance coverage).

One recent study said that Gleason score wasn't a specific risk factor for the 6-8% of pT2 R0 men who encounter BCR (if I remember correctly the percentage of positive biopsy cores was).

Genomic testing is new, and it hasn't really been fully integrated into the best-practices flowcharts, mainly for a lack of long-term data.

Djin

While your doc may have advised ART with LVI, a non Medicare policy would not have covered the treatment based solely on a LVI finding and high G score.

Post Edited (Duck2) : 7/24/2020 7:18:45 PM (GMT-6)

Posted 7/25/2020 2:09 AM (GMT 0)
Duck, you are correct. A quick googling by found BCBS of AL guidelines for cancer treatment and LVI+ alone does not qualify. With regard to a finding that obviously does qualify for adjuvant or salvage in these guidelines is, "Detectable or rising postoperative PSA level." What is the lowest "detectable" number that qualifies? 0.1? Are there guidelines for velocity too? For example, if my PSA rises, at what level would I be covered for SRT?

Djin
Posted 7/30/2020 6:49 AM (GMT 0)
Djin,

What does this mean: "pT2 R0 men"? I understand the pT2 part, but not the R0 part. (I checked the common PCa abbreviations but couldn't find it there. RO is radiation oncologist but R0 is not there.

Also I talked with some people at Decipher Biosciences regarding my husband's history. Interestingly someone there said that because it has been more than five years since my husband's RP, most insurance companies would probably not cover the Decipher test. We would be in the position of having our doctor talk with a Decipher rep to argue the necessity of the test. Given the positive resection margins and the increase in PSA, it could be a strong argument.

Obviously the Decipher info about the probability of BCR within five years is irrelevant. (We're beyond the five years.) Instead we would be using the Decipher test to get what they call "research only" info that would provide info on the aggressiveness of his cancer, what it may respond to and probable prognosis.

Can anyone think of any down side to having the Decipher test done?
Posted 7/30/2020 10:55 AM (GMT 0)
R0 is the abbreviation sometimes used in post-RP path reports and journal papers to signify no positive surgical margins were found. (I'm not sure if the R stands for Resection Margin Status or Residual Microscopic Disease.) The 0 signifies Not Found, just as N1 stands for Positive Node(s), Found, and MX means Metastases, Not Evaluated. Since positive margins can be the result of surgeon error as well as unavoidable because of tumor location, it isn't incorporated into the pT staging itself so, for example, you can be pT2 or pT3, and either R0 or R1*

Yes, the Decipher met prediction is for the first 5 years after RP; however, I don't think that if your tumor is high risk and you have no mets detected in that period, you suddenly drop to another risk category. On the flip side, I wouldn't expect tumor left behind that was Decipher low risk to progress to high risk, but that's just my guess. Note that in the Medicare pathology-justification I posted above, one of the checkboxes is a rising PSA, and there is no mention of a 5-year period. On the other hand, if your insurance declines coverage, you aren't out-of-pocket unless you decide to pay. (If you happen to call the company again with more questions, you can get the self-pay fee for you.)

Keep in mind that the scores in the accompanying GRID report for your tumor's response to (a) RT, (b) one immunotherapy medication, and (c) one chemo agent, (d) the time before ADT ceases to work, and (e) all the other info in the GRID, unlike the Decipher score itself, have not been clinically validated and are marked For Research Purposes Only. You should be able to find sample GRID reports online to see what it contains.

I can see the possible risk of over-reliance on the GRID for treatment decisions, but I, for one, can see its benefits in tie-breaking when making difficult decisions. Other than that and the possible expense, I would think the only other risk is if info becomes less reliable after 5 years, but the company could answer those questions for you.

But by all means, do your own research and check my info.
_________________
*Researching (unsuccessfully) the origin of the "R" I came across the following, which I had not seen before:

R0 =Complete microscopic resection
R1 = Microscopically positive surgical margins
R2 - Macroscopically positive surgical margins

Djin
Posted 7/30/2020 7:58 PM (GMT 0)
I also had a Prolaris test done early on my biopsy slides
Came back .61 - Intermediate Risk

BCBS (Anthem) did not cover that one as I was 2 cores 3+4, 3 cores 3+3. Doc appealed and got it covered. BC said it wasn't indicative of course of treatment but doc successful petition was also based on my high PSA level.

Signature shows my Decipher which were done on post op slides. Surgeon wanted that one done based on pathology. That one was covered without push back. Could be because of my pathology findings.
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