Localised prostate cancer, high and very high risk
Prepared with OnCo (onco.cc/prep/prostate-high-risk/). Orientation, not medical advice; your team knows your case.
My details
What I know, what is unclear, changes to discuss
Saved in this browserMy questions
16 on the sheet- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Gleason Grade Group 4 or 5, PSA above 20 ng/mL, PSMA PET staging, Germline and tumour HRR testing, Decipher genomic classifier), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
- 5.For my situation (high risk), which of the standard options do you recommend and why?
- 6.Am I a candidate for Leuprolide (leuprorelin) and GnRH agonists, Degarelix, Relugolix, and what side effects should I expect?
- 7.How do the results of HYPO-RT-PC apply to someone like me?
- 8.For my situation (very high risk and node-positive), which of the standard options do you recommend and why?
- 9.Am I a candidate for Abiraterone acetate, and what side effects should I expect?
- 10.How do the results of STAMPEDE and proPSMA apply to someone like me?
- 11.For my situation (after prostatectomy with adverse pathology), which of the standard options do you recommend and why?
- 12.Are there clinical trials I could join, for example of PSMA PET, ArteraAI Prostate, Decipher Prostate, Abiraterone acetate?
- 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 15.I read that “How long hormone therapy should last when abiraterone is added”. How does that affect my plan?
- 16.I read that “Whether PSMA PET-detected nodes should change treatment when the trials were staged conventionally”. How does that affect my plan?
The words I may hear
- Biochemical recurrence (BCR): PSA rising again after surgery or radiation, usually years before anything shows on a scan.
- Chromoplexy: Instead of collecting damage one mutation at a time, a prostate cancer genome can be scrambled in a single burst: several chromosomes break at once and are stitched back together in a chain, knocking out several cancer genes in one event.
- Extraprostatic extension and seminal vesicle invasion: Whether the cancer has grown out through the wall of the prostate (pT3a) or into the seminal vesicles behind it (pT3b).
- STAMPEDE's arms, and what each one answered: One British trial, running since 2005, has asked nine separate questions about prostate cancer treatment by adding new arms as the answers came in.
- Number needed to screen (and number needed to diagnose): How many men have to be offered the test for one man to be saved from dying of prostate cancer, and how many extra cancers have to be found along the way.
- PI-RADS (Prostate Imaging Reporting and Data System): The international scoring system radiologists use to say how likely a prostate MRI finding is to be a serious cancer, from 1 (very unlikely) to 5 (very likely).
- Polygenic risk score (PRS): A single number adding up hundreds of common, individually tiny genetic differences to say whether a man's inherited risk of prostate cancer is above or below average.
- Intermittent androgen deprivation (IAD): Taking planned breaks from hormone therapy once the PSA has settled, restarting when it rises again.
- Template mapping biopsy (transperineal template prostate mapping): A thorough biopsy done under general anaesthetic through the skin behind the scrotum, using a grid to sample the whole prostate systematically.
- Whole-mount pathology: Slicing the whole removed prostate into complete cross-sections on oversized slides, so each slide shows the entire gland in one piece rather than in fragments.
Tests and results to bring
Biomarker results to ask for: Gleason Grade Group 4 or 5, PSA above 20 ng/mL, PSMA PET staging, Germline and tumour HRR testing (BRCA2 in particular), Decipher genomic classifier.
Scans and tests linked to this cancer: Active surveillance, PSMA PET, Digital pathology & AI, RNA sequencing & expression profiling.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- High risk: External beam radiotherapy to prostate and pelvic nodes with 18 to 36 months of androgen deprivation, with or without brachytherapy boost; or radical prostatectomy with extended lymph node dissection. (IMRT / IGRT (modern external beam), Androgen deprivation & AR pathway inhibitors, Leuprolide (leuprorelin) and GnRH agonists, Degarelix, Relugolix, Brachytherapy, Robotic & minimally invasive surgery, HYPO-RT-PC)
- Very high risk and node-positive: Radiotherapy plus androgen deprivation with two years of abiraterone (STAMPEDE); PSMA PET staging before treatment. (Abiraterone acetate, STAMPEDE, PSMA PET, proPSMA)
- After prostatectomy with adverse pathology: Adjuvant or early salvage radiotherapy guided by PSA, with hormone therapy for higher-risk features. (IMRT / IGRT (modern external beam), Androgen deprivation & AR pathway inhibitors, PSA (prostate-specific antigen), Biochemical recurrence (BCR))
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.