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Thread: Decipher Score Results - Less than Thrilled

  1. #11
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    Quote Originally Posted by DjinTonic View Post
    The test itself is predictive. Let's assume it's prediction is High Risk. Since the test looked at removed tissue (biopsy or RP), the prediction is (for biopsies) the chances of mets or death in 5 and 10 years, respectively if you do nothing---and (for RP tissue) that some cancerous cells/tissue has been left behind. Obviously if every malignant cell were gone, you run no PCa risk, whatever your Decipher score.
    Djin
    For the Decipher Biopsy Score, the percentages given are those for after an RP. Also, for biopsy, they add in risk of a high grade disease shown after RP pathology -- my GG3 went to GG4. See the sample reports here:
    https://decipherbio.com/wp-content/t...ple-report.pdf
    Information on the sample submitted for testing:
    https://decipherbio.com/wp-content/t...structions.pdf
    I'm not sure if GenomeDX patents give any clear indication on what algorithms are used to generate the scores, but the algorithms may be immutable unless revalidated (my opinion only). The GRID report can get rescored since it is not a validated tool.

    IndyGuy has some benign prostate cells left at right nerve bundle, so that could be a source of minor PSA. We have no idea where our individual data point lies with respect to the overall distribution, it's just a personal risk assessment and tolerance decision [guided by bias, experiences, medical team, etc].
    6/18 New PCP asks "When was your last PSA level checked?" --> 11.5 so off to URO
    9/18 PSA 12.4, TRUS biopsy 10/18 yields 2 of 12 positive: LA GS6 <5%, RA GS7(3+4) 5% and the 4 is cribriform approaching 50%
    Clinical staging T1c, Decipher biopsy 0.94, 58 years old at DX
    12/18 RARP, pathology GS7(4+3) with cribriform, tumors in 10-15% of gland
    -SVI, -LVI, +EPE, +PNI, +BNI, +SM multifocal >=3mm pattern 4
    pT3a,pNx (lymph nodes inaccessible due to large mesh placement from 15 year ago bilateral hernia repair
    4/19 second opinion of pathology GS8, primary tumor composed of >95% cribriform (4+4), <1% pattern 5 and very minor focus comedo-necrosis, intraductal and postive margin at bladder resection
    still at pT3a,pNx and started six months of ADT with ART to start in a month or two
    1/19 PSA <0.1, 4/19 PSA <0.1

  2. #12
    Quote Originally Posted by farmanerd View Post
    For the Decipher Biopsy Score, the percentages given are those for after an RP. Also, for biopsy, they add in risk of a high grade disease shown after RP pathology -- my GG3 went to GG4. See the sample reports here:
    https://decipherbio.com/wp-content/t...ple-report.pdf
    Information on the sample submitted for testing:
    https://decipherbio.com/wp-content/t...structions.pdf
    I'm not sure if GenomeDX patents give any clear indication on what algorithms are used to generate the scores, but the algorithms may be immutable unless revalidated (my opinion only). The GRID report can get rescored since it is not a validated tool.

    IndyGuy has some benign prostate cells left at right nerve bundle, so that could be a source of minor PSA. We have no idea where our individual data point lies with respect to the overall distribution, it's just a personal risk assessment and tolerance decision.
    Thanks for the clarifications/corrections. And congrats on your recent PSA results!

    I checked my email, and my comment about GenomeDx being open to recalculating results was for the GRID report. (I inquired because my results showed an extremely poor (theoretical) response to ADT.)

    The calculated chance of "Primary Pattern 4 or 5 at RP" is actually available in the GRID report post RP. My score (on a 0 to 100) scale was 80%. It's interesting to see how this "prediction" stacks up against the reality of the path report.

    As to remaining benign cells, there is, unfortunately, no guarantee that they won't produce lesions if they remain viable.

    With regard to one's Decipher score and the overall distribution, there are correlation plots in this study, showing how distribution shifts according to Gleason score, stage, Capra-S score, and age, respectively, after RP:

    Decipher correlation patterns post prostatectomy: initial experience from 2 342 prospective patients [2016, Full Text]
    Last edited by DjinTonic; 06-06-2019 at 06:49 PM.
    69 yr at Dx, BPH x 20 yr, 9 (!) neg. biopsies, PCA3 -
    2013 TURP (90→30 g) path. neg. for cancer; then 6-mo. checkups
    6-06-17 DRE: nodule R and PSA rise, on finasteride: 3.6→4.3
    6-28-17 Biopsy #10: 2/14 cores: G10 (5+5) 50% RB, G9 (4+5) 5% RLM
    Bone scan, CTs, X-rays: negative
    8-7-17 Open RP, neg. frozen sections, Duke Regional
    SM EPE BNI LVI SVI LNI(16): negative, PNI+, nerves spared
    pT2c pN0 bilat. acinar adenocarcinoma G9 (4+5) 5% of prostate (4.5 x 5 x 4 cm, 64 g)
    11-10-17 Decipher 0.37 Low Risk: 5-yr met risk 2.4%; 10-yr PCa-specific mortality 3.3%
    Dry; ED OK with sildenafil
    9-16-17 (5 weeks) PSA <0.1
    LabCorp uPSA (Roche ECLIA):
    11-28-17 (3 mo. ) 0.010
    02-26-18 (6 mo. ) 0.009
    05-30-18 (9 mo. ) 0.007
    08-27-18 (1 year) 0.018
    09-26-18 (13 mo) 0.013 (checking rise)
    11-26-18 (15 mo) 0.012
    02-25-19 (18 mo) 0.015
    05-22-19 (21 mo) 0.015

  3. #13
    Regular User
    Join Date
    Apr 2019
    Posts
    22
    Thanks for the link -- it has a lot of good information. It even tells us some about the algorithm used to calculate Decipher scores:

    "The expression values for the 22 pre-specified biomarkers that constitute Decipher were extracted from the normalized data matrix and entered into the locked random forest algorithm with tuning and weighting parameters defined as reported previously.[5]"

    Beyond my math:
    https://en.wikipedia.org/wiki/Random_forest

    When going through the article, I came upon an interesting reference that Duck2 might like to review (or maybe he's seen it already):
    https://www.ncbi.nlm.nih.gov/pmc/art...pdf/zlj944.pdf

    Genomic Classifier Identifies Men With Adverse Pathology
    After Radical Prostatectomy Who Benefit From Adjuvant
    Radiation Therapy

    Purpose
    The optimal timing of postoperative radiotherapy (RT) after radical prostatectomy (RP) is
    unclear. We hypothesized that a genomic classifier (GC) would provide prognostic and
    predictive insight into the development of clinical metastases in men receiving post-RP RT and
    inform decision making.

    The discussion section at the end gives the usual coverage of results and limitations and valuable comments concerning related ongoing studies (some may have concluded by now?).
    6/18 New PCP asks "When was your last PSA level checked?" --> 11.5 so off to URO
    9/18 PSA 12.4, TRUS biopsy 10/18 yields 2 of 12 positive: LA GS6 <5%, RA GS7(3+4) 5% and the 4 is cribriform approaching 50%
    Clinical staging T1c, Decipher biopsy 0.94, 58 years old at DX
    12/18 RARP, pathology GS7(4+3) with cribriform, tumors in 10-15% of gland
    -SVI, -LVI, +EPE, +PNI, +BNI, +SM multifocal >=3mm pattern 4
    pT3a,pNx (lymph nodes inaccessible due to large mesh placement from 15 year ago bilateral hernia repair
    4/19 second opinion of pathology GS8, primary tumor composed of >95% cribriform (4+4), <1% pattern 5 and very minor focus comedo-necrosis, intraductal and postive margin at bladder resection
    still at pT3a,pNx and started six months of ADT with ART to start in a month or two
    1/19 PSA <0.1, 4/19 PSA <0.1

  4. #14
    Senior User
    Join Date
    Jan 2019
    Posts
    388
    Farmanerd,

    Started injection Monday. Still have recommendation for 6 or 24 month ADT. Have decided on 18 months ADT. Did not read your link, at this point I have statistic saturation.
    DOB 5/1957

    PSA - 11/2010=1.9, 6/12=2.3, 12/13=2.19, 12/14=2.64, 3/17=5.29, 3/17=3.91, 6/17=3.47, 12/17=4.50, 12/17=3.80, free PSA low risk (local (Uro, “My opinion you don’t have cancer), 8/18=5.13, 10/18=5.1, 10/19 ISO PSA 56% risk cancer. All DREs negative.

    DX 12/18, GS 8, 4+4 6/12 cores, LL Apex 100%, LM Apex 60%, LL Mid 50%, LMM 40%, LL Base 5%, LM <5%, Right side negative, (Uro opinion “This has been going on for a year”.... ah, more like 2 years ). Bone scan/CT negative

    2/25/19 R-LESS (Robotic Laparoendoscopic Single Site Surgery) outpatient Cleveland Clinic,

    3/6/19. Pathology - Grade Group 4 with Intraductal Carinoma
    T3aNO, GS8, 21 mm unifocal tumor 10%. -7 Nodes, - SV, - Margins, - PNI,
    - bladder neck neg., +LVI, + EPE non focal apex/mid lateral 1mm max extension, Cribriform pattern present. Decipher .86 High Risk. 38% risk 5 year metastasis.

    PSA 3/27/19 .03. (29 days)
    4/25/19 <.03. (58 days)
    5/25/19 <.02. (88 days)

    ADT started 6/3/2019

  5. #15
    Top User
    Join Date
    Aug 2016
    Posts
    1,531
    Quote Originally Posted by Duck2 View Post
    Did not read your link, at this point I have statistic saturation.
    I get that! I'm reminded of the book about highly effective habits of highly effective people.

    Habit #1, " Take action."

  6. #16
    Regular User
    Join Date
    Apr 2019
    Posts
    22
    Duck2,

    Like Another has said, you have taken action, so don't even bother with the link -- it'll just support taking action. Hopefully you will have mild hot flashes, but if not my advice would be to turn the AC down a couple of degrees and fans, fans, fans, fans, fans. Pelvic floor therapy has gotten my incontinence controlled to where I have my RT simulation scheduled for 6/17/19 (about two months after starting ADT). Some stress incontinence issues left and some feelings of urgency, but the urgency may be mostly due to my second bladder infection which was diagnosed a couple of days ago after intermittent hematuria for a few weeks. I just hope that this one doesn't aggravate my osteitis pubis which seemed to be tied to my first bladder infection back in mid February.

    With all of this going on, I'm in a good place right now and frequently feel like shouting "I'm back!". It's a feeling much more of me with cancer treatments instead of cancer with me. Don't know exactly how to describe it, but maybe it's me dominating the cancer instead of the other way around. It's a good feeling. Darn ADT is making my eyes water again!

    Best wishes to you . . . to all of you.
    Last edited by farmanerd; 06-07-2019 at 02:32 PM.
    6/18 New PCP asks "When was your last PSA level checked?" --> 11.5 so off to URO
    9/18 PSA 12.4, TRUS biopsy 10/18 yields 2 of 12 positive: LA GS6 <5%, RA GS7(3+4) 5% and the 4 is cribriform approaching 50%
    Clinical staging T1c, Decipher biopsy 0.94, 58 years old at DX
    12/18 RARP, pathology GS7(4+3) with cribriform, tumors in 10-15% of gland
    -SVI, -LVI, +EPE, +PNI, +BNI, +SM multifocal >=3mm pattern 4
    pT3a,pNx (lymph nodes inaccessible due to large mesh placement from 15 year ago bilateral hernia repair
    4/19 second opinion of pathology GS8, primary tumor composed of >95% cribriform (4+4), <1% pattern 5 and very minor focus comedo-necrosis, intraductal and postive margin at bladder resection
    still at pT3a,pNx and started six months of ADT with ART to start in a month or two
    1/19 PSA <0.1, 4/19 PSA <0.1

  7. #17
    Senior User
    Join Date
    Jan 2019
    Posts
    388
    Maybe too soon, but so far I have no side effects from the ADT. So I am wondering if it takes more time, isn’t working, or I had very low T to start with.

  8. #18
    Regular User
    Join Date
    May 2019
    Posts
    41
    Hello Gents,

    I hope all is well. My two ROs called me back last week to discuss my most recent PSA (0.010) and my Decipher Score (High). The first one is affiliated with the hospital where I had my prostatectomy (Indiana University Health) and the second works at St. Vincent's Hospital here in Indy. Both are highly regarded in my region. The IU Health RO stated that he would like to see two successive rises in my PSA before recommending RT. The ST. V RO stated that while I do have some troubling pathology he would only recommend RT if I wanted "insurance" radiation treatment to mop up any potential residual cancer cells. He stated "It's really a 'philosophical' question as to whether proceed or wait." I suggested whether or not we should set a trigger point for PSA to start RT - perhaps 0.03. He said that if we decide to wait then he would recommend 0.1 as the trigger point due to the fact that PSA numbers can bounce around somewhat at very low levels.

    My URO doc did not call me back last week. A little disappointed in him due to the fact he was the one advocating the Decipher test. BTW, the ROs didn't seem to put a huge emphasis on the Decipher tests but they did take it into consideration. In any case, the URO really doesn't have much more than a consulting role at this point.

    So my plan is to wait for two successive increases in my PSA or it hits 0.030 - which ever comes first - before starting RT. I know this decision will raise some eyebrows with a few of my fellow Brothers on this forum. Trust me, I've read the literature and also some of our Brother's signatures that show cancer can indeed come back after several months, or even years, after surgery. I've also seen where Brothers with very low PSA have remained cancer free for many years - their high risk pathology notwithstanding. I'm not saying I will not change my mind on this decision but it's certainly how I feel after discussing it with two ROs affiliated with two different hospital.

    As we all know, and go through great pains to point out, these types of decisions are very personal and what one person decides may not be what someone else feels is best for them - or even best for me. So, with that said, I graciously accept any feedback from my Brothers.

    Best,

    IndyGuy
    DOB: 10/1962

    6-01-15 PSA 2.5
    Having urination flow issue in first half of 2018. Flomax 6/1-6/21 - no help.
    6/25/18 PSA 14.25; Cipro 14 days
    8/1/18 PSA 17.44; rec. Urologist appt
    8/15/19 First Uro appt. + for bacteria. Cipro 4 weeks (caused tendonitis in feet)
    10/2/19 PSA 22.4; Still + for bacteria. Antibiotics 4 more weeks
    12/28/19 PSA 27.5
    1/15/20 Biopsy results 6/12 cores positive - all left side; GS 4+3
    1/18/19 Bone scan and CT scan both negative
    2/15/19 Di Vinci RP
    2/18/19 Path report pT3a, GS 4+3 (60%+35%) 5% GS5, SM +, EPE +; LVI -, SVI -, LNI(9) - ; Tumor size: 3.5cmx3.5cmx1.5cm (yikes); single foci left side; right side nerves spared; SM+ at apex limited <1mm; benign prostatic cells noted at spared right nerve bundle margin. Prostate size 45gm.
    Cath out at 7 days: 100% continent with some ED; ok with 10mg Cialis.
    Decipher 0.73 - 5-year Metastasis risk 20%; 10-year PCSM 13%.

    PostOp PSA testing:
    3/26/19 (6 weeks) 0.033
    5/10/19 (3 months) 0.010

  9. #19
    Congrats on deciding on a treatment plan. I see your doc's point about philosophy--you want your decisions to give you as much peace of mind as possible. That a big part of all types of insurance/assurance. With your post-op profile, early SRT could have a nice payoff by averting a future recurrence, even though you wouldn't have proof of it. And who knows what your PSA will do! Here's to only good news!

    Djin
    Last edited by DjinTonic; 06-09-2019 at 05:50 PM.

  10. #20
    IndyGuy,

    Sounds like a good plan to me. Before we started SRT I asked our RO if she would have given ART. I held my breath waiting for her answer because if she responded with yes that would have meant I failed my husband and should have fought harder for it after learning he had a bladder neck margin.

    Thankfully she said no. She pretty much said what you outlined, we needed to see consecutive increases in his uPSA or hit the 0.03 mark. We didn't hit 0.03 but we were heading there and she agreed something was going on and the Decipher was not to be messed with.

    I think you're doing all that you can at this point. Good luck to you!

    R2F
    Last edited by Ready2Fight; 06-09-2019 at 09:33 PM.
    Wife posting for spouse - 51, age at dx 48
    06/2016: PSA 6.48
    07/2016: PSA 7.22 FPSA 10% 12 Core Biopsy Negative
    10/2016: PSA 6.30 FPSA 13%
    12/2016: MRI W/COIL PI-RADS 5 with Probable EPE, Bones/LN Clear
    12/2016: Biopsy Two cores 3+4 and Seven cores 3+3
    02/2017: RP Pathology 3+4 Grade 4 component is 5%
    Prostate: 32.7 gm Tumor Volume Estimate: 35%
    No EPE or lymphovascular invasion 13 lymph nodes, Seminal vesicles, vasa deferentia, no tumor present
    High grade prostatic intraepithelial neoplasia, Perineural Invasion: Present
    Tumor involves proximal basilar margin of 2.0 mm Gleason at margin is 3 pT2c,N0,MX,R1
    04/2017: 6 Week PSA <0.01
    05/2017: 3 Month uPSA <0.006
    8/2017: 6 Month uPSA <0.006
    11/2017: 9 Month uPSA 0.014 12/2017: Re-test 0.012
    2/2018: 12 Month uPSA 0.006
    5/2018: 15 Month uPSA 0.014
    8/2018: 18 Month uPSA 0.013
    11/2018: 21 Month uPSA 0.018 12/2018 Re-test 0.021
    SRT: Started 1/2019
    5/2019 27 Month uPSA <0.006
    Decipher 0.75
    100% Dry, No ED

 

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