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Advice on obtaining Decipher pre-SRT

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Posted 1/19/2019 5:46 AM (GMT 0)
I was approached for advice from 75 year old family friend who had RRP in 2001 and just became aware that he is in midst of a BCR (see PSAs below) after his PCP who has been ordering PSAs for last several years finally called the recurrence to his attention and sent him to RO.

RO ordered Axumin PET, which, of course, found nothing at his PSA. RO is advising to move quickly with SRT including neoadjuvant ADT.

Friend is in generally good health and is concerned about side effects from SRT. Given very slow PSADT and his age it would seem reasonable to at least consider continuing conservative approach which he has, unwittingly, already been taking for several years.

He asked RO about Decipher but she said Decipher testing is not indicated in the setting of a rising PSA such as his. Given his case, there would not be a clear understanding how to interpret the results and results of the test would not change her treatment recommendations for radiation. This does not sound right to me from everything I have read. I would appreciate insights / advice from anyone about benefit of Decipher in this case and how to get it ordered and paid for by insurance (although he is 75 friend has private insurance through working spouse) or else what it would cost him if insurance will not pay.

I have also advised him to have the surgical specimen sent to Hopkins for detailed read (e.g. extent and Gleason grade of PSMs). If necessary, I wonder if Hopkins would order Decipher for him while they have the specimen?

Original Pathology was done by community hospital and is not very detailed. Final post-op GS was 3+4 with multiple PSMs (base, apex and radial). Original biopsy was only 3+3.

Given PSMs, long time to BCR and very slow PSADT seems likely this could be residual indolent G6.

Recent PSA history…

7/23/12 0.2 (no “<” in EMR but assume it was dropped in transcription from paper chart)
11/5/12 0.2 (no “<” in EMR but assume it was dropped in transcription from paper chart)
1/4/13 0.15
6/22/13 0.15
1/20/15 0.18
2/9/16 0.28
8/3/16 0.29
2/4/17 0.29
2/15/18 0.33
12/10/18 0.36
Posted 1/19/2019 12:50 PM (GMT 0)
njs,

Sorry I cannot answer your questions. But I did have two items of related info to pass on:


(1) at my yearly uro appt. last month, Dec. 2018, I discussed possibility of getting a gene test done for me. My uro had brought it up in 2013 about a year after my RALP, but I declined then due to cost we could not handle. In the recent appt., he told me the tissue degrades after 3 years so I can no longer get the gene tests, like Decipher.


(2) On your sig line for your friend:

"11/5/12 0.2 (no “<” in EMR but assume it was dropped in transcription from paper chart)"

My uro told me my Dec. 2018 standard PSA test of .1 could actually be anywhere between .050 and .149. He said the test just rounds, or truncates, that way. He said it only will print out as <.1, .1, .2, .3, etc. I had happened to "uPSA test" myself the week before I did my annual blood draw for his standard PSA test. My uPSA showed .048, so I calculate my real PSA was really about .052 a week later when I did the blood draw for him. He and I have had several "discussions" about standard vs ultrasensitive testing. So we have agreed to disagree. He does his test. I do mine.

Anyway, your friend's lab test could actually have shown with no "<". If his blood level was actually .150 or slightly above, and his doc at that time was using the same kind of standard PSA my uro uses, your friend's result would have printed as .2, and that would not have been transcription error but just the way standard psa works.

"Let's not give the patient accurate data, because maybe he/she cannot handle the real data". That is so stupid.

Robert
Posted 1/19/2019 3:01 PM (GMT 0)
Njs, i had a Decipher ordered by my doctor when PSA was .03. My doctor had no problem ordering it.

With that said, it didn’t affect my treatment decision. With a steadily rising PSA, despite a low risk Decipher score, I chose to err on the side of caution (and was advised to do so by two top RO’s.

With your friend, three is clearly a rising trend, and it’s already high enough that it needs to be treated. So I agree with the Dr who said it wouldn’t affect treatment decision.
As far as his age, unless he’s got other health issues, 75 is not old in this day and age and that shouldn’t affect his treatment decision.

For what it’s worth, I had no serious issues I’m two months past SRT, and 2 months out if my last Lupron shot
Posted 1/19/2019 5:35 PM (GMT 0)

njs said...
I was approached for advice from 75 year old family friend who had RRP in 2001 and just became aware that he is in midst of a BCR (see PSAs below) after his PCP who has been ordering PSAs for last several years finally called the recurrence to his attention and sent him to RO.

Friend is in generally good health and is concerned about side effects from SRT. Given very slow PSADT and his age it would seem reasonable to at least consider continuing conservative approach which he has, unwittingly, already been taking for several years.

He asked RO about Decipher but she said Decipher testing is not indicated in the setting of a rising PSA such as his.....This does not sound right to me from everything I have read.

7/23/12 0.2 (no “<” in EMR but assume it was dropped in transcription from paper chart)
11/5/12 0.2 (no “<” in EMR but assume it was dropped in transcription from paper chart)
1/4/13 0.15
6/22/13 0.15
1/20/15 0.18
2/9/16 0.28
8/3/16 0.29
2/4/17 0.29
2/15/18 0.33
12/10/18 0.36

He's 75, had surgery 18 years ago, and it's taken almost three years for his PSA to increase from .28 to .36 Very far from clear cut BCR. Heck, it could be argued that he has plateaued. Far too many are panicked into pulling the trigger early, IMHO.

I'm not physician, but his PCP isn't doing him any favors, nor is his RO. He needs to find a PCa expert, at a major hospital to get informed advise. Just more premature BCR hysteria in my opinion. Keep in mind how RO's generate revenue. Where is he located?

More information and data can't hurt. A Decipher test is a good idea. You can just call the hospital lab where he had his surgery, and they will send his slides to Dr. Epstein and Decipher. Actually if you talk to Decipher, they will set it up themselves. I don't think a read from Epstein, at this late date, will change any action he may take. If insurance won't cover the Decipher, call them directly and work out a 'deal'; I've heard as low as $400. Also ask if 18 year old samples can be meaningfully tested at all.

Good luck, and thanks for helping your buddy out!
Posted 1/19/2019 5:46 PM (GMT 0)
This is just my opinion. He is healthy and active at 75, low Gleason and a very slow doubling time. I don't think the promise of SRT is worth the risk of life changing side effects.
Posted 1/19/2019 7:52 PM (GMT 0)
Note to Bobbiesan - you asked about Decipher test costs of me in another thread - I did find out that my surgeon who ordered it bills it to his office so I haven't been able to find out what it costs.
I did find that they have a website, perhaps they can let you know cost information
https://deciphertest.com/

Hope this helps
Posted 1/23/2019 2:24 PM (GMT 0)
Thanks everyone for the inputs so far.

My friend has decided he'd like to get an expert 2nd opinion on what to do / not do from a risk-based perspective. His insurance will apparently pay for travel as well as the consult.

He was thinking of going to Hopkins. Although Hopkins is not really known for radiation they have a Multidisciplinary Clinic where he could talk to both radiation and medical oncologists during a day-long session.

The first thought I had was for him to go see Anthony D'Amico from Dana-Farber.

Any other suggestions of where to go / who to see for expert advice on his situation? He is in Chicago area.

Post Edited (njs) : 1/23/2019 7:58:31 AM (GMT-7)

Posted 3/3/2019 11:21 PM (GMT 0)
Update on this: My friend just returned from his consult at Hopkins.

The RO he saw told my friend that if he were 10 years younger recommendation may be different but, given his age and very slow PSA doubling rate, RO did NOT recommend SRT at this time.

RO advised my friend to monitor PSA every six months and follow up if kinetics change. He also said that if PSA reaches 1.0 within 2-3 years he'd recommend a PSMA PET scan at that time.

RO apparently also mentioned SBRT as an alternative to IMRT, but my friend didn't seem to have a lot of details on that.

Post Edited (njs) : 3/3/2019 4:25:23 PM (GMT-7)

Posted 3/4/2019 5:20 PM (GMT 0)
That is one good RO at JH (no surprise) your buddy visited. Very good council IMHO, and no need to concern himself with treatment choices like SBRT or IMRT yet. His age is a major factor in treatment decisions.
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