Meeting Summary
Advanced prostate cancer patient Rick Stanton walked through a one-page summary of the NCCN (National Comprehensive Cancer Network) guidelines for advanced prostate cancer and illustrated it with his and Brian McCloskey’s treatment journeys. The NCCN guidelines are the “standard of care” – the evidence-based protocol for deciding on treatments for patients with prostate cancer. Rick started his summary of the NCCN guidelines after the prostatectomy step since he is focusing on the journey for advanced prostate cancer. From there, most branches in the NCCN decision tree depend on whether the patient’s PSA (prostate specific antigen, a blood test result), is rising or not, and whether their cancer has spread outside the prostate (metastasized).
Rick and Brian’s PSA rose after their prostatectomy, so they switched from observation (“watchful waiting”) and had the next recommended treatment: radiation and drugs (Lupron and bicalutamide/Casodex) that suppress androgen, the hormone that feeds the cancer. This androgen suppression treatment worked for about a year for Rick and Brian. Brian was doing so well, he and his medical team decided to take a holiday from the androgen suppressing drugs, and then after several months his PSA started rising rapidly. Rick’s PSA started rising rapidly after about a year. At this point for both, with PSA rising, and now both with metastases (cancer in other places besides their prostate), the NCCN treatment recommendation is to try one of several drug options. Rick chose a next generation androgen blocker (darolutamide). After a few months, it was clear that this wasn’t working for him, so he joined a clinical trial that had two arms: one for chemotherapy (docetaxel) and another with that same chemotherapy plus two other drugs (a PD1 inhibitor and an adenosine inhibitor). Unfortunately, Rick got the clinical trial control arm with chemotherapy only, which he has stayed on until today. It has knocked down his PSA. Brian chose another androgen-suppressing drug (abiraterone), which he is on now. It is keeping his PSA at a very low level.
The first four or five rounds of decisions in the NCCN guidelines are largely not personalized. They depend on whether the cancer has metastasized and the PSA level. It is only in the very advanced stages of prostate cancer that personalization (decisions which draw on genomic tests) enters.
In our next meeting Rick and Brian will continue to talk about ways to (a) enhance the NCCN guidelines to refine this overview of the whole journey – a roadmap for communication between patients and doctors, (b) bring more testing and associated personalization earlier in the decision process, (c) add data on the efficacy of the treatment options, and (d) add a roadmap for steps beyond the end of the current guidelines.
Requests
- Do you have any feedback on Rick’s presentation on the decision tree for advanced prostate cancer testing and treatments? How could we improve it?
- Do you have contacts at the NCCN whom we could contact to explore the possibility of collaboration?
Meeting this Week
Please join us for our next video chat on Wednesday, May 3, at noon Eastern.
Our meeting agenda is:
- A continuation of discussion of the testing and treatment decision roadmap (led by Rick Stanton)
- Feedback on the CureMatch presentation (led by Ally Perlina)
- Further discussion of the inclusion of hypotheses and insights from public data sets for prostate cancer guidance (led by Saed Sayad)
- Meeting Transcript (Temporarily Restricted)
