1. Michael Kamerick Sequoia Consulting Twitter: #AMIA2017
Prostate Cancer – What I Knew Then and What I Know Now
The Personal Journey: Informatics from the Patient Perspective
S06
Michael Kamerick
Sequoia Consulting
Twitter: #AMIA2017

2. Our Panelists Michael Kamerick, Sequoia Consulting
Jessie Tenenbaum, Duke University
Ed Hammond, Duke University
Ross Koppel, University of Pennsylvania
Format
15 min presentation each, up to two audience questions each
General audience questions

3. Disclosure
I disclose the following relevant relationship with commercial interests:
Consultant to TriNetX, Inc.
Consultant to Prognosis Data, LLC
Sales Agent for Prometheus Research, LLC
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4. Learning Objectives
After participating in this session the learner should be better able to:
Understand how informaticists react to and manage their own encounters with illness and disease
Understand the treatment options, including alternative therapies, for prostate cancer recurrence following primary treatment
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5. A Brief History of My Prostate Cancer
Diagnosed in August 2005
T2b, Gleason 3+4
Asymptomatic, discovered because of PSA acceleration
Diagnosis delivered by phone during NCI luncheon
My Reaction
Grief at first, then resolve
Dealt with fear by quantifying my risk
Investigated surgery vs. radiation
Radical Prostatectomy in November 2005 at UCSF
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6. A Brief History of My Prostate Cancer, …
Clean PSA through 2014
Quarterly tests, then semi-annual, then annual
Did not test between 2014 and 2017
Can’t calculate PSADT (PSA Doubling Time)
PSA of .2 ng/mL in February 2017, confirmed
.192 ng/mL in June 2017
.207 ng/mL in September 2017
Next test in December 2017
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7. PCa Biochemical Recurrence (BCR)
Defined by AUA as a PSA reading of .2 ng/mL following primary treatment
American Urological Association
Largely for monitoring purposes
Not clear that treatment is advised or indicated until PSA reaches .4 ng/mL
The AUA defines biochemical recurrence as an initial PSA value =0.2 ng/mL followed by a subsequent confirmatory PSA value =0.2 ng/mL.40 However, a cut- point of 0.4 ng/mL may better predict the risk of metastatic relapse.
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8. My Reaction Really, really annoyed
Saw local urologist, then went back to UCSF
Treatment choices, if necessary, are radiation and ADT (Androgen Deprivation Therapy)
Investigated supplements
Started taking them by the pound, or so it seems
Green Tea extract, Pomegranate extract, Biocurcumin, Metformin (off-label)
Investigate risk models and modeling, used nomograms from Hopkins and others
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9. My Mortality Risk To Quote Bernie LaSalle: My Questions:
The sunsets are closer than the sunrise
My Questions:
How close is that sunset?
Do I have time to order more cocktails?
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10. JHU Nomogram – PCa survival after BCR
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11. My Mortality Risk, by the numbers
1% Chance of PCa death in 5 years
5% Chance in 10 years
14% Chance in 15 years
Numbers improve significantly if I get to 15 mos or greater PSADT
40% Chance of death from all causes in 15 years (CDC)
In aggregate, everything else is more dangerous than PCa!
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12. My Strategy Watchful waiting
Continue to ingest annoying numbers of pills
If I pass the 15 month test (May 2018), and my PSA has NOT doubled -
DO NO HARM
In other words, no clinical treatment
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13. PCa and Genomics
Currently focused on inherited risk and aggressive cancers
OncoTypeDx requires tumor tissue - oops
Harvesting secondary tumor tissue might be possible
23andme doesn’t report on PCa specific genes following FDA action.
Not clear that any genomic assay would affect my decisions at this point
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14. BCR Incidence Rates Survey of large research network (TriNetX)
37M+ patient records
Terminology does not encode ICD-10 code for BCR – R97.21
Does encode PSA rise – R97.2
Queried patients with R97.2 following prostatectomy
Indeterminate results
Data Warehouse at large AMC – OMOP
Epic source system does not encode R97.21
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15. Reference Papers and Articles
Green Tea Extract (EGCG)
Pomegranate Extract
BioCurcumin
Metformin
Risk Calculators
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16. Email me at: mkamerick@gmail.com
Thank you!
me at:

17. AMIA is the professional home for more than 5,400 informatics professionals, representing frontline clinicians, researchers, public health experts and educators who bring meaning to data, manage information and generate new knowledge across the research and healthcare enterprise.
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18. Recurrence Probabilities for 10 years
Using Hopkins risk calculators
Pre-surgical – 10%
Post Surgical – 24%
Using MSK calculator
Post surgical – 2%
My original understanding
At time of primary treatment – 5%
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