I just received the results from my Decipher. It was 0.71. I had a prostatectomy April 1st 2019. I was never undetectable. 0.6 to 0.13 October 2019. Started ADT (Casodex/Lupron) October 6th/IMRT January 6th 2020. I was supposed to only do 4 month ADT run, but she wants me to do 6 months. I am tolerating ADT fairly well and will probably do it. She is referring me to a MO. (Gleason 4+3/3+4 two cores/max PSA 3.8/pathology completely clear otherwise).
Decipher...0.71 What now?: I just... - Advanced Prostate...
Decipher...0.71 What now?
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Did you have a PET scan before IMRT?
Yes an Axumin Scan. My PSA only peaked at 0.13, so it was unlikely to pick up anything.
What was your path (not your biopsy) Gleason score? You seem to have a low PSA type of PC - it may also be ADT and RT resistant. I'd go heavy on both.
Gleason 4+3/3+4 two lesions. Pathology/Biopsy the same. Pathology was all clear. 18 lymph nodes, seminal vesicles, vas deferens all clear. All encapsulated. T2aNOMO
BTW after two Lupron shots I am undectable, so something is sensitive to it. I am not naive to think there may very well be cells that are not however.
What was your recent undetectable PSA? I too had high DECIPHER, .83. Similar pathology, but positive margin and EPE. My Decipher GRID, showed me with low response scores to ADT but more so, RT. I’m still undetectable PSA at .01, but only 3 months out from surgery. Might ask about your GRID if you haven’t already, although they make sure that you know it’s still just a research tool and not to be used for treatment guidance. Still, it’s out there for you. What was your PSA 3 months post surgery?
My PSA peaked at 0.13 October 3, 2019. Started Casodex November 1. First Lupron November 6th. PSA November 26 0.05.
Third shot January 6th, PSA <0.03 undectable.
My PSA 3 months post op was 0.08, then 0.11 then 0.09 in August.
Thanks so much for the info. I will ask about the grid.
Your doctor should have it. As I said, it’s not validated and in developmental stages so he/she may not use it. I think of it as simply one more piece of info to consider. Best to you in your treatment.
Would you mind kindly explaining what the Decipher GRID actually is? Thank you.
biospace.com/article/releas...
This link probably explains it better than I. It’s too technical for me but the main takeaway in my case is that it gives a predictive response to RT, ADT, and chemotherapy. I’m sure some of the other folks on this site can explain the GRID. Again, at the top of each page of the GRID report it states not to use it in clinical decision making.
I will have to look at my Decipher Report closer. So since my PSA has dropped to undetectable, I would assume it would appear that I have response to ADT at this juncture. I speak with my RO Tuesday and I will ask her. Thanks so much for the link! Much appreciation!
Sounds like it’s working perfectly and you have a solid plan. Undetectable is key, right? Sometimes too many statistics and projections get overwhelming. I’d say your nice PSA response is very reassuring.
Hopefully. I think the question now between myself and my RO is should we continue for a couple more months. It seems the data might be a bit conflicting as to the utilization of ADT and sRT. I think most of the studies I have read seem to give it an additional 5 to 10% overall survival benefit, but it all depends of the level of your PCa apparently.
Luckily I have seemed to mitigate many of the side effects and my RO stated that if the side effects were to become progressively worse we might just stop. Initially I was supposed to do 4 months and my 4th would be February 6th. I guess we'll see.
I forwarded the JAMA report to her. I meet with her Tuesday and we'll see what she says.
Thank you...I greatly appreciate it!
Directionally, your high Decipher score means that your PCa is likely to be a bit of a tougher nut to crack, but it needs to be read with caution.
Firstly, you have had a very successful surgical outcome as far as pathology is concerned - pT2a is a nice result. So you caught it before it had gone too far. And secondly, you have had timely salvage radiation, with adjuvant HT - you couldn’t have done any better, no matter what your Decipher score was.
I am pT3b, Decipher 0.91, and have read every paper published looking at how Decipher correlated with outcomes. Of course it would be great to have a lower Decipher score, but such work as has been done indicates that the more aggressive behaviour of high Decipher PCa is usually pulled back into line with ‘normal’ PCa in the face of good quality treatment such as you have had.
There are likely to be some more definitive Decipher- related papers published this year, and that may change the picture I’ve painted, but that’s pretty much how it looks at the moment.
With your Decipher, I’d do the six months of HT, but that’s just my view. For what it’s worth, I have just finished up 12 months of HT (including 8 months on zytiga) after eSRT at PSA of. 0.12... but the T3b puts me in a much worse place, leaving aside the higher Decipher ....
Stuart
Thank you so much Stuart for putting things into perspective. I am an RN in a PICU for 34 years at the University of Chicago and am seen there too as a patient, so I am sure I come off as a bit of a crazed person wanting to be so on top of everything. I was the one who pushed to see the RO as soon as my PSA showed it was going up a bit rapidly post op. I know doubling times of PSA at so very low level is not overly predictive, but the studies I had read out of Johns Hopkins have be showing that early SRT had the best outcomes and the 0.2 threshold was a hold over from when the ultra sensitive PSA did not exist. I already asked my RO if she could give me a referral to a MO so as to get a plan up and running if we decide we need to pull the trigger on that front. That is what I did with the RO. I met with her in August and we decided to wait to see if my next PSA went up and it did so we decided to pull the trigger in October.
This whole thing is such a roller coaster! And I REALLY HATE roller coasters.
Monday I had asked about doing ADT for an additional two months and what date my RO had as it related to 4 months vs 6 months and effectiveness. So Tuesday she took me into her office and stated that she had the results of my DECIPHER and we had the conversion about 4 or 6 month ADT...LOL For some odd reason I always seem to be a few steps ahead of my physicians...lol. I think I am definitely going to do the 6 month. Other than having waterworks when listening to the radio and some mild "warm flashes", my side effects have been tolerable. Oh little very libido too. That one is really kind of feels weird.
Hi, I had a .83 decipher result. Path is similar to yours at 4+3, Pt3a. Doctor ordered Decipher and indicated we’d proceed with radiation if number came back high risk. Then PSA was .01 at 3 months post surgery and now he’s decided to wait and see April result before deciding next steps. I know he’d like to give me 6 months to heal after surgery if possible before starting RT, but waiting flies in the face of Decipher. Welcome your input. My GRID numbers don’t favor RT, but I know that the GRID is not validated. Still, it’s tough to ignore that piece. Sounds like you’ve done well with your treatment.
I would discuss it with you Oncologist
You should wait as long as you are able to sllow for healing.
There are studies from Hopkins show better outcomes when you treat at a lower PSA. It seems to me the 0.2 threshold is a bit arbitrary and not take into account today's ultra sensitive PSA.
ncbi.nlm.nih.gov
Genomic classifier augments the role of pathological features in identifying optimal candidates for adjuvant radiation therapy in patients with prostate cancer: development and …
Deepansh Dalela, María Santiago-Jiménez, Kasra Yousefi, R Jeffrey Karnes, Ashley E Ross, Robert B Den, Stephen J Freedland, Edward M Schaeffer, Adam P Dicker, Mani Menon, Alberto Briganti, Elai Davicioni, Firas Abdollah
Journal of clinical oncology: official journal of the American Society of Clinical Oncology 35 (18), 1982, 2017
Purpose
Despite documented oncologic benefit, use of postoperative adjuvant radiotherapy (aRT) in patients with prostate cancer is still limited in the United States. We aimed to develop and internally validate a risk-stratification tool incorporating the Decipher score, along with routinely available clinico-pathologic features, to identify patients who would benefit the most from aRT.
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Tissue-based genomics augments post-prostatectomy risk stratification in a natural history cohort of intermediate-and high-risk men
Ashley E Ross, Michael H Johnson, Kasra Yousefi, Elai Davicioni, George J Netto, Luigi Marchionni, Helen L Fedor, Stephanie Glavaris, Voleak Choeurng, Christine Buerki, Nicholas Erho, Lucia L Lam, Elizabeth B Humphreys, Sheila Faraj, Stephania M Bezerra, Misop Han, Alan W Partin, Bruce J Trock, Edward M Schaeffer
European urology 69 (1), 157-165, 2016
Background
Radical prostatectomy (RP) is a primary treatment option for men with intermediate- and high-risk prostate cancer. Although many are effectively cured with local therapy alone, these men are by definition at higher risk of adverse pathologic features and clinical disease recurrence. It has been shown that the Decipher test predicts metastatic progression in cohorts that received adjuvant and salvage therapy following RP.
Objective
To evaluate the Decipher genomic classifier in a natural history cohort of men at risk who received no additional treatment until the time of metastatic progression.
Design, setting, and participants
Retrospective case-cohort design for 356 men who underwent RP between 1992 and 2010 at intermediate or high risk and received no additional treatment until the time of metastasis. Participants met the following criteria: (1) Cancer of the Prostate Risk Assessment postsurgical (CAPRA-S) score ≥3; (2) pathologic Gleason score ≥7; and (3) post-RP prostate-specific antigen nadir <0.2 ng/ml.
Outcome measurements and statistical analysis
The primary endpoint was defined as regional or distant metastases. Time-dependent receiver operating characteristic (ROC) curves, extension of decision curve analysis to survival data, and univariable and multivariable Cox proportional-hazards models were used to measure the discrimination, net benefit, and prognostic potential of genomic and pathologic risk factors. Cumulative incidence curves were constructed using Fine-Gray competing-risks analysis with appropriate weighting of the controls to account for the case-cohort study design.
Results and limitations
Ninety six patients had unavailable tumor blocks or failed microarray quality control. Decipher scores were then obtained for 260 patients, of whom 99 experienced metastasis. Decipher correlated with increased cumulative incidence of biochemical recurrence, metastasis, and prostate cancer–specific mortality (p < 0.01). The cumulative incidence of metastasis was 12% and 47% for patients with low and high Decipher scores, respectively, at 10 yr after RP. Decipher was independently prognostic of metastasis in multivariable analysis (hazard ratio 1.26 per 10% increase; p < 0.01). Decipher had a c-index of 0.76 and increased the c-index of Eggener and CAPRA-S risk models from 0.76 and 0.77 to 0.86 and 0.87, respectively, at 10 yr after RP. Although the cohort was large, the single-center retrospective design is an important limitation.
Conclusions
In a patient population that received no adjuvant or salvage therapy after prostatectomy until metastatic progression, higher Decipher scores correlated with clinical events, and inclusion of Decipher scores improved the prognostic performance of validated clinicopathologic risk models. These results confirm the utility already reported for Decipher.
Patient summary
The Decipher test improves identification of patients most at risk of metastatic progression and death from prostate cancer after radical prostatectomy.
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There’s nothing about a high Decipher that pushes you to ultra-early SRT - and there’s every reason to delay and let things heal, if you can. The key decider of eSRT timing is PSA... I left it 14 months before starting eSRT and HT, until PSA was 0.13.... in the end, logistics dictated the actual date, but I didn’t get the sense that a few months either way mattered that much.
Stuart
isn’t high risk decipher telling us to proceed with ART rather than wait until PSA begins to move. Thought that was the fundamental message to those of us in high risk group.
I'm no doctor but it seems to me that you'll need to give ADT a better chance / more time.
I recall my own situation where it took 10 months to bottom out on ADT. There is no consensus overall on some ADT protocols but 4 months simply won't cut it. Seeing as you appear to be managing the SEs well, you should continue with the professional advice offered to you.
We wish you well. Keep us posted.
I am in no way averse to continuing on ADT. I actually brought it up to my RO last Monday since I have been tolerating the effects fairly well. Then she informed about the Decipher Test results on Tuesday. I guess I was a bit prescient...LOL. She felt that maybe we should continue another 2 months for a total of 6 month. I will get my fourth shot February 6th.
I became undetectable January 6th before my second shot. My peak PSA was 0.13 in October. I am now <0.03. Thank you very kindly for you support and encouragement. I have also asked for a referral to a MO. I guess we will see what they say.
I'll have to check out 'Decipher'.
That term suggests a type of test, but I'm not aware of the parameters and implications.
I guess I have some homework to do ....
THXS !
Hey thanks, you’ve done your Decipher homework! Actually meant for that to go to Stuart. Sorry, my error. You and I talked the other day, but I’ve not heard his story, especially as it relates to Decipher. BTW, since you and I discussed DECIPHER GRID the other day, I spoke to my daughter who works at the Cleveland Clinic cancer center and she said they do not use the GRID at all in treatment decisions, at least at this stage of it’s development. Thanks very much for the links, keep us posted.
I speak with my RO tomorrow.
I think we are on the cusp of highly specific treatments targeting each individual's unique genetic markers.
We already utilize CAR T for non solid tumors at the University of Chicago.
Absolutely agree. Would like to know what your RO has to say if you feel like sharing that info. I’m in Oklahoma by the way.
She didn't say a whole lot. I guess with early RT and ADT my nomogram survival went to 92% for 5 years and 88% for 10 years
Compared to what and according to what? My survival chance at 15 years is 97% according to Sloan Kettering nomogram, but DECIPHER was 82% at 10 years. How are you tolerating treatments?
God only knows...LMAO! Literally. It is just a numbers game...your mileage may vary~ LOL. I am actually doing better than I expected. I am such a crazy worry wort! I am at 20 with 14 more to go.
The urinary urgency has increased for sure and a couple of times and REALLY had to have a bowel movement in a hurry, but I think that was my fault. I found some cherries that were amazing and ate a whole bag. Poor life choice...LOL
Skin is doing well so far too. The ADT has not been too bad. No libido whatsoever. I have only had some very, very mild warm spells. No fatigue at all, but I hit the gym like a crazy person and I paid for a trainer once a week. No the water works, that is a different story. I seem to cry at the drop of the hat! I told my wife to please turn off that "Love" channel on XM!
So far so good on balance. I just wish going forward I could have some good results for a time period...that last more than a few months! This has been non stop for the last year.
Hope you are doing well too!
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