🏅Your Path to Certification
Earn your way up three evidence-based tiers. Each builds on the last. Finish all three and receive your Certified Prepared Patient · Prostate Cancer Survivor badge and printable certificate, recognized across the FFH Network.
Aware · Identity: Self-Advocate
You know your body, your risk group, and your survivorship phase. Layer 1 — Survivorship Literacy.
- Complete Modules 1–4 (Survivorship Literacy)
- Pass the "What Survivorship Is" quiz (≥80%)
- Identify your stage, Gleason / Grade Group, PSA at diagnosis, PSA nadir, current PSA, treatment received (surgery / RT / active surveillance / ADT / oral hormonal agents), testosterone if on ADT, BRCA / multi-gene panel result, and surveillance schedule (PSA cadence + DXA / lipid / A1c if on ADT + cardio-oncology if applicable)
- Build your written Treatment Summary / Survivorship Care Plan + monthly continence + sexual-function + PHQ-9 / GAD-7 trackers with the FFH "Notice and Name" framework
Active · Identity: Care Team Member
You partner with your team and navigate the system. Layer 2 — Care & System Literacy.
- Complete Modules 5–7 (Make Every Visit Count · When to Call vs ED · Comorbidity Awareness)
- Demonstrate teach-back on your treatment plan (PSA cadence, ADT side-effect plan if applicable), the modifiable lifestyle stack (weight / aerobic + resistance / Mediterranean / alcohol), and your "when to call vs 911" decision rule for the late-effect + recurrence-signal map
- Complete one "great visit" prep + debrief
- Build your When-to-Call plan + Care Team card; cardio-oncology referral if extended ADT or pre-existing CV disease; sexual-medicine + pelvic-floor PT contacts saved
- Successfully resolve one prior auth (oral hormonal agent, denosumab/bisphosphonate, PDE5 inhibitor), copay-help application, or survivorship-clinic-navigator engagement
Certified Prepared Patient · Identity: Ambassador
You teach, mentor, address disparities, and shape research & policy. Layer 3 — Advocacy & Ambassadorship.
- Complete Modules 8–10 (Family & Care Team · Talk to Partner / Sons / Employer + Mentor · Mastery & Graduation)
- Mentor 1 newly-finished-treatment survivor via ZERO Prostate Cancer / Us TOO / PCF / Malecare / Imerman Angels OR present at a survivorship-clinic / primary-care education session
- Sign the Prepared Patient Pledge
- Complete the BRCA / HOXB13 / hereditary-risk family conversation if applicable (cascade testing for sons, brothers, daughters); age-appropriate prostate-screening conversation with sons (especially AA or family-history); advance care planning if relevant
- Submit one advocacy action (story, feedback letter, AA mortality-disparity piece, clinical-trial-access advocacy, Survivorship Care Plan policy comment)
📋Master Pre / Post Assessment
Where You Stand — Confidence Before & After
Seven dimensions of being a Prepared Patient. Answer once at the start of your journey and again at the end. Your goal is to see real growth across understanding, self-management, communication, and optimal utilization — knowing when to call your team, when to use Day Hospital, and when to go to the ER. Your answers stay on this device unless you choose to share with your clinician.
📈 Your Pre→Post Growth
📞Know Who to Call — Before the ER
Survivorship runs as a long arc — acute (treatment + first months), extended (the first few years, when PSA monitoring and ADT effects are ramping), and permanent (years to decades, when cadence settles but late-effect and recurrence vigilance continue). Active surveillance is its own arc. Most days are routine. Some days bring symptom-tracking or refill calls. The high-leverage signals — late effects (severe ADT side effects, urinary retention, hematuria, cardiotoxicity, mood crash) and recurrence signals (rising PSA, axial bone pain, cord-compression symptoms) — deserve recognition cold. Knowing the right number to call — your survivorship clinic, your oncology / urology team, ZERO / Us TOO / PCF helplines, or 911 — saves time, dignity, and life. Save these numbers in your phone today. The numbers below are placeholders — your institution will fill in the right ones for you.
🚨 Crushing chest pain, stroke signs, cord compression, suicidal crisis — 911 / 988
Crushing chest pain or new severe shortness of breath = 911 — possible cardiotoxicity event, MI, or PE (ADT amplifies CV risk in vulnerable men). Stroke signs (sudden facial droop, arm weakness, slurred speech, severe headache) = 911. Cord-compression symptoms (back pain with leg weakness / numbness / bowel-bladder loss — concerning for spinal metastasis) = 911 — emergency. Suicidal ideation or active self-harm crisis = call 988 Suicide and Crisis Lifeline (free, 24/7) and/or 911. Acute urinary retention (cannot pass urine, painful distended bladder) = ED.
🧭 New persistent bone pain, urinary retention/hematuria, cardio symptoms, mood crash — same-day call
For new persistent bone pain (especially axial spine / hip / ribs — concerning for metastasis; pain at rest / night / progressive matters), worsening urinary symptoms (urinary retention beyond baseline, gross hematuria, severe new incontinence change), exertional fatigue / SOB / chest pain (cardiotoxicity, especially on extended ADT), persistent depression / anxiety / fear-of-recurrence affecting function (PHQ-9 ≥10 or GAD-7 ≥10), severe ADT side effects affecting function (severe hot flashes, severe fatigue, severe mood, severe muscle / cognitive changes), or new bowel symptoms post-RT (rectal bleeding, severe urgency), call your [Survivorship Clinic Triage Line: (555) 123-4567]. Most issues are addressable in clinic.
💬 Routine questions, refills, scheduling, peer + mental-health support
Use [MyChart portal] first — most messages answered within 1 business day. For oral hormonal agents / denosumab / bisphosphonate refills or copay help, call [Specialty Pharmacy: (555) 222-9050]. For peer mentoring, hereditary-risk questions, and local resources, call the ZERO Prostate Cancer helpline 1-844-244-1309 or Imerman Angels 1-877-274-5529 for 1:1 mentor matching — free, real humans, weekdays. For mental-health crisis: 988 Suicide and Crisis Lifeline.
🚑 Call 911 right away for any of these
Crushing chest pain · severe shortness of breath · stroke signs (face droop, arm weakness, slurred speech, severe headache) · cord-compression symptoms (back pain with leg weakness / numbness / bowel-bladder loss) · active suicidal crisis (call 988) · severe new neuro deficit / seizure · acute urinary retention (cannot pass urine, painful distended bladder — ED) · fall with head injury or possible fracture (especially in ADT-treated bone-loss patients) · fever with rigors / low BP / suspected sepsis — 911.
📚Condition Literacy & the 10 Prepared Patient Competencies
A Prepared Patient builds three kinds of health literacy — and grows into three identities. Each competency works through the FFH three pillars: Learn It · Live It · Share It.
Advocate for Self
You speak up for your own care, plan, pain, and goals.
Care Team Member
You partner with your team — not above, not below.
Ambassador
You teach, mentor, and shape research, policy & access.
🧬 Condition Literacy Learn It · Tier 1 Aware
"I know my body and my disease." The foundation. Without this, nothing else holds.
What Survivorship Is
The IOM defines survivorship as the period from diagnosis through the rest of life. ASCO splits the post-treatment arc into three phases: acute, extended, permanent. Active surveillance for low-risk disease is its own arc — structured monitoring, not "no treatment." "Treatment is over; the journey isn't."
Know My Numbers + Treatment Summary
Stage at diagnosis, Gleason / Grade Group, PSA at diagnosis, PSA nadir, current PSA + cadence, treatment received (active surveillance, surgery + nerve-sparing status, RT type + field + Gy, ADT drug + duration, oral hormonal agents), testosterone if on ADT, BRCA / HOXB13 / multi-gene panel result. The IOM Survivorship Care Plan core. Bring it to every visit.
Lifestyle Force Field — Weight, Exercise, Diet, Alcohol, Sleep
Real survival-extension evidence. Weight management toward BMI <25 (associated with lower mortality). Exercise: aerobic ≥150 min/wk + 2–3× resistance (ACSM Roundtable). Resistance training is especially protective in ADT users (muscle + bone). Mediterranean / DASH-style diet (HPFS associated with lower prostate-cancer-specific mortality). Alcohol moderation. Smoking cessation. Avoid high-dose vit E + selenium (SELECT trial: no benefit).
ADT & Other Therapies — Plain Language
ADT (androgen deprivation therapy): LHRH agonists (leuprolide), LHRH antagonists (degarelix, relugolix), surgical orchiectomy. Side effects: hot flashes, bone loss, metabolic syndrome, mood, fatigue, muscle / cognitive, sexual. Bone protocol: DXA + Ca + vit D + bisphosphonate (zoledronic acid) or denosumab. Metabolic monitoring annual. Oral hormonal agents for advanced: abiraterone, enzalutamide, apalutamide, darolutamide. Active surveillance: serial PSA + biopsies — structured monitoring, not "no treatment."
🤝 Care & System Literacy Live It · Tier 2 Active
"I'm part of the team. I navigate the system." Where most preventable ED visits, late-effect crises, and frustration happen — and where this course pays off the most. Optimal utilization lives here.
Make Every Visit Count — SHARE Approach + Teach-Back
AHRQ SHARE Approach (Seek, Help, Assess, Reach, Evaluate). Teach-back at every visit. 3-question max written priority list. Treatment Summary + med list + second pair of ears. Survivorship visits cover PSA, ADT side effects (if applicable), continence, sexual health, mental health — preparation multiplies value.
When to Call vs Go to ED — Late Effects + Recurrence Signals
Crushing chest pain / severe SOB / stroke signs / cord-compression symptoms / acute urinary retention / suicidal crisis (988) = 911 / ED. New persistent axial bone pain (worse at rest / night) / hematuria / worsening urinary symptoms / severe ADT side effects affecting function / new bowel symptoms post-RT / PHQ-9 ≥10 = same-day call. Most issues are addressable in clinic.
Comorbidity Awareness — Cardiovascular, Bone, Metabolic, Mental Health, Sexual, Cognitive
Prostate Cancer Survivor-specific Module 7. The survivorship comorbidity ecosystem. Cardiovascular disease as #1 cause of death in long-term survivors — bigger than prostate cancer itself. ADT amplifies metabolic syndrome (weight, lipids, A1c, BP) and CV risk → cardio-oncology integration. Bone loss from ADT → DXA + Ca + vit D + bisphosphonate or denosumab. Depression / anxiety elevated, especially on ADT — cross-references Depression + Anxiety courses. Sexual health and relationship impacts. Cognitive effects on ADT. Cluster CROSS-REFERENCED (HTN/T2D/CKD often co-occur), not embedded.
📣 Advocacy & Ambassadorship Share It · Tier 3 Certified
"I speak up. I lift others. I shape the future." This is what turns a Prepared Patient into a force multiplier for the whole community.
Family, Caregiver, and the Care Team — Long-Arc Partnership + the Survivorship Care Plan
The partner helps with PSA-cadence support, ADT side-effect education, late-effect recognition (mood, cognitive change, fatigue), intimacy / continence / sexual-health conversations. Team: urology / urologic oncology + medical oncology (advanced disease) + radiation oncology + PCP (transitioning over years) + cardio-oncology (if extended ADT or pre-existing CV disease) + sexual-medicine specialist + pelvic-floor / urinary-continence PT + behavioral health + genetic counseling (if BRCA / HOXB13 indication) + ZERO / Us TOO / PCF / Malecare / Imerman peer support.
Sharing — Talk to Partner, Sons, Employer; Sexual Health / Continence; BRCA; Mentor
Partner: intimacy, sexual function (PDE5 plan, vacuum erection device, penile injection or implant decision), urinary continence, body image — name them explicitly. Sons (and brothers, fathers, nephews): family history → ~2× lifetime risk; age-appropriate screening discussions (typically 40–50, earlier and more aggressive for AA or family-history). BRCA / HOXB13 / hereditary-risk conversation is a powerful Ambassador move. Employer: ADA covers cognitive accommodations + schedule flex + urinary-continence accommodations. Mentor via ZERO / Us TOO / PCF / Malecare / Imerman.
Mastery & Graduation — PSA Cadence, Lifestyle Stack, Transition to Permanent Survivorship
PSA monitoring cadence held steady. Lifestyle stack (weight / aerobic + resistance / Mediterranean / alcohol / sleep / smoking cessation) habituated. Surveillance schedule on rails (PSA, DXA / lipid / A1c if on ADT, cardio-oncology echo if applicable). Mental-health rhythm (PHQ-9 / GAD-7) maintained. BRCA / HOXB13 hereditary cascade testing complete if applicable. Sons informed about screening if relevant. ZERO / Us TOO / PCF peer mentoring active. Earn Certified Prepared Patient · Prostate Cancer Survivor.
👥My Care Team
Your team is bigger than just the doctor — and the care partner is part of it. Click any card to edit, or click the + tile to add a new team member. Saved on this device. The Force Field Emergency Card below auto-syncs from this list. Starter roster pre-populated for prostate cancer survivorship — your institution can edit any row. The Force Field Emergency Card auto-syncs from this list.
📖Glossary — words you'll hear
Plain-English definitions for terms doctors and labs use. Tap to expand.
Survivorship (IOM definition)
Risk group + Gleason / Grade Group
PSA (prostate-specific antigen)
ADT (androgen deprivation therapy)
Oral hormonal agents (abiraterone, enzalutamide, apalutamide, darolutamide)
Active surveillance
Erectile dysfunction (post-treatment)
Urinary incontinence (post-prostatectomy)
BRCA1 / BRCA2 / HOXB13 (hereditary prostate cancer)
Survivorship Care Plan (SCP)
DXA + bone-protection protocol on ADT
ACSM Roundtable (Exercise & Cancer)
Mediterranean diet (HPFS evidence)
PHQ-9 / GAD-7
PSMA PET imaging
🧪Lab Test Tutor — what your numbers mean
Lab Test Tutor — what your numbers mean
Don't just see a number — know what it means and what to ask. Your "normal" may be different from a friend's. Ask your team to write your personal baseline in the column on the right.
| Test | What it measures | Typical adult range | What to ask if it's off | My baseline |
|---|---|---|---|---|
| Treatment Summary (lifetime) | Stage at diagnosis · Gleason / Grade Group · PSA at diagnosis · PSA nadir · current PSA + cadence · treatment received (active surveillance, surgery + nerve-sparing status, RT type + field + dose Gy, ADT drug + duration, oral hormonal agents) · BRCA / HOXB13 / multi-gene panel result. The IOM Survivorship Care Plan core. Carry it to every visit. | Personalized lifetime data set | Can I have my written Survivorship Care Plan / Treatment Summary? | [fill in] |
| PSA monitoring | The surveillance backbone. Post-prostatectomy: q3–6mo first 1–2 yrs then q6–12mo; biochemical recurrence = PSA >0.2 ng/mL on two readings. Post-RT: q3–6mo; Phoenix definition (nadir + 2 ng/mL) = biochemical recurrence. Active surveillance: q3–6mo + DRE + serial biopsies. On ADT: PSA + testosterone q3–6mo. | Cadence varies by treatment | When is my next PSA? What is my trend? | [fill in] |
| DRE (digital rectal exam) | Periodic exam by urology / oncology, especially if treatment is in place but prostate tissue remains (post-RT, active surveillance). Guidance varies; ask your team. | Periodic per team | Is DRE on schedule for my treatment type? | [fill in] |
| DXA bone density (if on ADT) | Baseline + every 1–2 years on ADT — ADT accelerates bone loss. Score: T-score >-1 normal · -1 to -2.5 osteopenia · ≤-2.5 osteoporosis. Treat with Ca + vit D + bisphosphonate (zoledronic acid q6–12mo) or denosumab q6mo if osteoporosis. | T-score >-1 desirable; treat osteoporosis | When is my next DXA? Should I be on Ca / vitamin D / bisphosphonate or denosumab? | [fill in] |
| Lipid panel + A1c (if on ADT) | ADT causes metabolic syndrome (weight gain, lipid changes, A1c rise). Annual lipid panel + A1c is standard for survivors on ADT. Statin per ASCVD risk. | LDL <100 (or per ASCVD risk) · A1c <5.7% | Is my lipid panel + A1c on schedule? Should I be on a statin? | [fill in] |
| Testosterone (if on ADT) | On ADT, testosterone should fall to castrate levels (<50 ng/dL). Confirms biochemical effect. Periodic check, especially if PSA rises (consider possible incomplete suppression). | <50 ng/dL on ADT (castrate level) | Is my testosterone at castrate level on ADT? | [fill in] |
| Echo / cardiac monitoring (cardio-oncology) | Indicated for survivors on extended ADT or with pre-existing CV disease. Echo / GLS as indicated. Long-term prostate cancer survivors often die of CV disease > prostate cancer itself — surveillance matters. | LVEF ≥50%; GLS within normal | Do I need cardio-oncology echo given my treatment + risk factors? At what cadence? | [fill in] |
| PHQ-9 / GAD-7 (mental health) | PHQ-9 for depression, GAD-7 for anxiety. Survivors — especially on ADT — should self-check monthly. Score ≥10 warrants a clinical conversation. Cross-references Prepared Patient · Depression and Prepared Patient · Anxiety courses. | 0–4 minimal · 5–9 mild · 10–14 moderate · 15+ severe | Should I screen with PHQ-9 / GAD-7 today? If ≥10, what's the plan? | [fill in] |
| Continence + sexual function self-monitoring | Symptom journal: pads/day if incontinent, urgency, leakage triggers; erectile function (e.g., IIEF-5 or simple journal); pelvic-floor / Kegel adherence. The data make sexual-medicine + pelvic-floor PT conversations concrete. | Trend tracking; track improvements | Should I be using a structured symptom journal? IIEF-5? | [fill in] |
| NO routine bone scan / PSMA PET | Imaging in asymptomatic survivors is reserved for rising PSA or new symptoms — not routine. PSMA PET is the modern modality, more sensitive than old bone scan / CT for low-volume recurrence. Available, coverage improving. | Symptom / PSA-driven only | Is imaging needed today, or can we wait for a clear signal? | [fill in] |
| BRCA / HOXB13 / multi-gene panel (if not done) | Recommended for AA men, advanced disease, family-history patterns (multiple breast / ovarian / pancreatic / prostate cancers), dx under 60, others. BRCA2 in particular is associated with more aggressive disease. HOXB13 is more common in AA men. Cascade testing in family members (sons, brothers, daughters) saves lives. | Negative / VUS / positive (BRCA1/2, HOXB13, ATM, etc.) | Was I tested? Are there family members who should have cascade testing? | [fill in] |
| BP at home + clinic | ADT and oral hormonal agents (especially abiraterone with prednisone) can affect blood pressure. Home BP cuff + clinic readings; treat per ACC/AHA targets. | <130/80 (or per individual target) | Is my BP at goal? Any meds problematic with my hormonal therapy? | [fill in] |
➕Add-On Modules & Earnable Badges
Stackable modules that match your situation. Complete one to earn an extra badge on your certificate. Your institution can add their own.
📈 PSA Tracking Routine
Simple log or app — date, PSA value, treatment status. Plot over time. Cadence varies by treatment (post-RP q3–6mo first 1–2 yrs; post-RT similar; active surveillance q3–6mo with biopsies; on ADT q3–6mo with testosterone). Bring to every visit.
💪 Pelvic-Floor / Kegel Routine for Continence
First-line for post-prostatectomy urinary incontinence. Pelvic-floor PT supervised + daily Kegel routine. Most men improve substantially over 6–12 months. Apps + biofeedback help. For persistent incontinence: male sling or artificial urinary sphincter discussion.
💞 Sexual-Medicine Plan
Erectile dysfunction is very common after surgery and after RT. Plan: PDE5 inhibitors (sildenafil, tadalafil) first-line; vacuum erection device; intracavernosal injections; penile prosthesis for selected cases. Penile rehabilitation programs aim to preserve erectile-tissue health post-surgery. Couples therapy as appropriate.
🦴 DXA-Driven Bone Health Protocol (on ADT)
Baseline DXA + every 1–2 years on ADT. Adequate calcium (~1200 mg/day) + vitamin D (target per labs). Bisphosphonate (zoledronic acid IV q6–12mo) or denosumab q6mo if osteoporosis or rapid loss. Resistance training preserves bone.
❤️ Cardio-Oncology Echo Cadence (extended ADT)
If extended ADT or pre-existing CV disease: echo + GLS surveillance per cardio-oncology. Statins per ASCVD risk. Aerobic + resistance exercise is protective. Long-term prostate cancer survivors often die of CV disease > prostate cancer itself.
🧠 PHQ-9 + GAD-7 Monthly Self-Check
Brief monthly mood / anxiety self-check, especially on ADT (depression / anxiety prevalence elevated). Score ≥10 = clinical conversation. Cross-link Prepared Patient · Depression and · Anxiety courses (Sprint 6) for full treatment context.
🧬 BRCA / HOXB13 / Genetic Counseling Visit
If you fit a hereditary-risk pattern (AA men, advanced disease, family-history pattern, dx under 60, others) and have not been tested — genetic counseling now. BRCA2 in particular is associated with more aggressive disease. Cascade testing for sons / brothers / daughters saves lives.
📋 Survivorship Care Plan Request
Per the IOM 2005 standard, every survivor should have a written Survivorship Care Plan summarizing diagnosis, treatment, surveillance, late-effect map, long-term care recommendations. Ask your urology / oncology team if you don't have one.
📅 PSA Cadence + DXA Annual Schedule
PSA cadence per treatment type. DXA every 1–2 years on ADT. NO routine bone scan / PSMA PET in asymptomatic survivors. Symptom-based imaging or rising-PSA triggered.
🏋️ Resistance-Training Routine (Especially on ADT)
Resistance training is the antidote to ADT-related muscle and bone loss. Aim 2–3× per week. Start light (resistance bands at home or supervised gym). Combined with aerobic ≥150 min/week, this is your survival lever.
👨👦 Sons Screening Conversation
Sons of prostate cancer survivors have ~2× lifetime risk. Earlier and more aggressive in AA or family-history patterns. Conversation: shared-decision-making PSA screening discussion typically starting age 40–50 (40 for AA / family-history). Hereditary-risk testing if BRCA / HOXB13 positive in survivor.
🧪 In a Prostate Cancer Survivorship Clinical Trial?
Protocol literacy, side-effect tracking, when to call the study coordinator vs your usual oncology / urology team. Trials currently enrolling in: PSMA-targeted therapies, PARP inhibitors for BRCA-positive disease, intermittent ADT, lifestyle-intervention RCTs (INTERVAL-GAP, MEAL), active surveillance optimization.
📋 Advance Care Planning (if relevant)
For survivors with metastatic or castration-resistant disease, or complex comorbidities: POA, healthcare proxy, advance directive, POLST/MOLST, will, financial plan — done while capacity is clear and the conversation is calm.
+ Add Your Institution's Module
Drop in your own — survivorship clinic onboarding, active-surveillance protocol, cardio-oncology integration, sexual-medicine + pelvic-floor PT pathway, hereditary-risk genetic-counseling pathway, identity-aligned mentor program (especially AA-focused), anything.
🛡️Force Field Emergency Card
🛡️ Force Field Emergency Card FRIDGE · WALLET · EMT-READY
A one-page emergency record for any EMT, ER, new doctor, or transition visit. Print one for the fridge, one for your wallet. Updates anytime. This is the document you hand to a stranger when you can't speak for yourself.
🤝 My Care Team — call list for any clinician picking up my care
📘My Health Passport
📘 My Health Passport PATIENT-OWNED JOURNAL
This is your record — not your hospital's. Log every visit, capture every question for next time, and watch your own trends. Many of you get care at more than one hospital, on more than one record system. This Passport travels with you. Future versions will let you import data directly from your patient portals (the "Blue Button" vision).
🩺Working With a Prepared Patient
Your patient is going through a structured, evidence-based course for the post-treatment chapter of prostate cancer. Here's how to get the most out of every visit, support PSA-monitoring adherence, surface late effects early (especially ADT side effects and CV risk), partner with the caregiver, and address equity (AA mortality disparity is the #1 issue). Built on the AHRQ SHARE Approach, the IOM teach-back method, the IOM 2005 From Cancer Patient to Cancer Survivor framework, ASCO Survivorship Guidelines, ACS Prostate Cancer Survivorship Care Guidelines, NCCN Survivorship, AUA, ESC / ACC cardio-oncology, and WCRF/AICR lifestyle recommendations.
The SHARE Approach — your 5-step playbook
Use these steps in any order. Cycle back. Use teach-back at every transition. Source: AHRQ Pub. No. 25-0005 (Oct 2024).
💬Teach-Back & Risk Communication
The two highest-yield, lowest-cost SDM techniques. Use both at every visit.
🔁 Teach-Back (1–2 min)
- "Just so I know I explained it well — what would you tell your spouse about why we're starting ADT? About the bone-health protocol with calcium / vitamin D / DXA / denosumab? About when to call us for vs going to the ED?"
- Open-ended ("what" / "how"), not yes/no.
- If they get it wrong: "I must not have explained it well — let me try a different way." Then teach-back again.
- Use it for: ADT side-effect management, the modifiable lifestyle stack (especially resistance training on ADT), late-effect recognition (cardiotoxicity, bone loss, mood, fatigue, sexual / continence), PSA cadence, BRCA / HOXB13 cascade testing.
- Document teach-back in your note — it's a quality measure and a billable element of care.
🔢 Communicating Numbers
- Use absolute risk, not relative. "13 out of 100" beats "13%" beats "1 in 8" beats "low risk."
- Keep denominators & timeframes constant when comparing options.
- Show, don't tell: icon arrays, Wong-Baker FACES, written summary.
- For lab numbers: give the action threshold, not just the value. "Your PSA rose from 0.05 to 0.18 over a year post-prostatectomy — biochemical recurrence is >0.2 on two readings. We're close to that threshold — let's plan a next-step conversation, possibly PSMA PET imaging if it crosses."
⚠️Prostate Cancer Survivor-Specific Clinical Guardrails
Survivorship Care Plan & Treatment Summary
- Generate a written Survivorship Care Plan (SCP) per IOM 2005 / ASCO standard — every survivor should have one. Include Gleason / Grade Group, stage, PSA at diagnosis, PSA nadir, current PSA, treatment received (surgery + nerve-sparing status; RT type + field + dose Gy; ADT drug + duration; oral hormonal agents), BRCA / HOXB13 / multi-gene panel result, surveillance schedule, late-effect map.
- Transition planning: explicit plan for transitioning surveillance and comorbidity management to PCP over the extended phase. Many survivorship clinics now formalize this.
PSA Surveillance + Recurrence Definitions
- Post-prostatectomy: PSA q3–6mo first 1–2 yrs, then q6–12mo. Biochemical recurrence: PSA >0.2 ng/mL on two readings.
- Post-RT: PSA q3–6mo. Biochemical recurrence by Phoenix definition: nadir + 2 ng/mL.
- Active surveillance: PSA q3–6mo + DRE + serial biopsies + imaging per protocol; treat if disease progresses.
- On ADT: PSA + testosterone q3–6mo; testosterone should be at castrate level (<50 ng/dL).
- Imaging: bone scan / PSMA PET only on rising PSA or new symptoms — not routine.
ADT Management & Side-Effect Surveillance
- ADT options: LHRH agonists (leuprolide), LHRH antagonists (degarelix, relugolix), surgical orchiectomy. Oral hormonal agents for advanced disease: abiraterone (with prednisone), enzalutamide, apalutamide, darolutamide.
- Bone protocol: baseline DXA + every 1–2 years on ADT; calcium ~1200 mg/day + vitamin D; bisphosphonate (zoledronic acid IV q6–12mo) or denosumab (60 mg SC q6mo) for osteoporosis or rapid loss.
- Metabolic monitoring: annual lipid panel + A1c + BP on ADT; statin per ASCVD risk.
- Cardio-oncology: refer for extended ADT or pre-existing CV disease; echo / GLS as indicated. Long-term survivors often die of CV disease > prostate cancer itself.
- Mental health: PHQ-9 / GAD-7 monthly on ADT — depression and anxiety are elevated; behavioral-health linkage if ≥10. Cross-link Depression / Anxiety courses.
- Side-effect management: hot flashes (gabapentin, SNRI venlafaxine, CBT, acupuncture); fatigue (exercise — strongest evidence); muscle / bone (resistance training is the antidote); sexual changes (sexual-medicine plan).
Late-Effect Management (Surgery + RT)
- Erectile dysfunction (post-RP and post-RT): sexual-medicine plan — PDE5 inhibitors first-line; VED, intracavernosal injections, penile prosthesis. Penile rehabilitation programs aim to preserve erectile-tissue health post-surgery.
- Urinary incontinence (primarily post-RP): pelvic-floor / Kegel PT first-line; male sling or AUS for persistent incontinence.
- Bowel symptoms (post-RT): often delayed; manage with dietary, medical, occasionally procedural.
- Cord compression in suspected metastatic disease: back pain + leg weakness / numbness / bowel-bladder loss = emergency. Urgent imaging + steroids + decompression.
Hereditary Risk & Equity
- Genetic counseling: AA men, advanced disease, family-history pattern, dx under 60, others. BRCA2 in particular is associated with more aggressive disease. HOXB13 more common in AA men.
- Equity: AA men have ~2× prostate-cancer-specific mortality, 1.7× incidence, earlier age at diagnosis, less trial access. Identify and address access barriers explicitly.
- Lifestyle stack: BMI <25, ≥150 min/week aerobic + 2–3× resistance (ACSM Roundtable; resistance especially ADT-protective), Mediterranean / DASH-style diet (HPFS lower mortality), alcohol moderation, smoking cessation, sleep 7–9 hr. Avoid high-dose vit E + selenium (SELECT trial: no benefit).
🌍Cultural Competence & Trust
Prostate cancer survivorship disparities are stark and addressable. African American men: ~2× prostate-cancer-specific mortality; 1.7× incidence; earlier age at diagnosis; higher Gleason at presentation; longer time from diagnosis to treatment; underrepresentation in clinical trials; lower access to genetic counseling and PSMA PET imaging. Hispanic men: rising mortality; later-stage at diagnosis; language and access barriers; cultural conversations about screening + sexual health under-addressed. AAPI men: different patterns; rising in some communities. Rural men: distance to oncology / urology / radiation / cardio-oncology — sometimes 100+ miles. Sons of survivors: ~2× lifetime risk; AA sons face the highest disparity. SGM patients: data thin; many face additional access barriers. Repair starts in your office.
- Refer to genetic counseling per NCCN criteria — especially for AA men, advanced disease, and family-history patterns. Cascade testing for sons / brothers / daughters saves lives in the next generation.
- Refer to clinical trials regardless of who is in front of you. Underrepresentation in prostate cancer trials is a clinical-pathway problem, not a patient problem. AA men are particularly under-enrolled.
- Refer to cardio-oncology + sexual medicine + pelvic-floor PT early — these specialists are undersized in many systems but high-leverage. Identify the regional partners.
- Use qualified medical interpreters — never family, never minor children except in true emergencies. Survivorship-care-plan, hereditary-risk, and intimacy / sexual-health conversations must be done in the patient's primary language.
- Invite the care partner in. With patient consent — decisions about ADT side-effect management, late-effect recognition, and intimacy / continence are family conversations in many cultures.
- Name the disparity when it's relevant. "I know AA / Hispanic / rural / SGM survivors face access challenges in our system. We try to push back against that here. Tell me if anything feels off."
🏥Customize for Your Institution
Clone this course and replace the highlighted blocks with your own information. Each editable field below is a placeholder — change it once and it propagates through the patient view.
📞 What Should Replace the When-to-Call Block
- 24/7 oncology / urology on-call number
- Survivorship Clinic outpatient hours & address
- Specialty pharmacy line (oral hormonal agents, denosumab/bisphosphonate, PDE5 inhibitors)
- Cardio-oncology direct line
- Sexual-medicine + pelvic-floor PT contacts
- Behavioral health rapid-access line + 988 Suicide and Crisis Lifeline
- ZERO Prostate Cancer / Us TOO / PCF / Malecare / Imerman Angels local resources
- Patient portal login URL with caregiver proxy
👤 Who Is Your Survivorship Care Navigator?
- Name, role, photo, calendly/booking link.
- What teach-back / device check-ins they own (PSA cadence, ADT side-effect monitoring, DXA-driven bone health protocol, monthly PHQ-9 / GAD-7).
- How patients and care partners reach them between visits.
- How they handle prior-auth navigation (oral hormonal agents, denosumab, PDE5 inhibitors, PSMA PET imaging), copay help, BRCA / HOXB13 / multi-gene panel coordination.
📚 Add Your Own Modules
- Your clinical trial protocols (PSMA-targeted therapies, PARP inhibitors for BRCA-positive disease, intermittent ADT, lifestyle-intervention RCTs like INTERVAL-GAP / MEAL, active-surveillance optimization).
- Oncology dietitian onboarding letter — Mediterranean / DASH-style framing, weight-management resources, alcohol-moderation, resistance-training language.
- Insurance & financial-aid pathways (ZERO Patient Assistance, CancerCare Co-Pay Assistance, Patient Advocate Foundation, NeedyMeds, manufacturer copay programs for oral hormonal agents).
- Local peer support partners (ZERO / Us TOO / PCF / Malecare / Imerman chapters, identity-aligned mentor pairs, AA-focused groups).
🎨 Re-skin in 2 Lines of CSS
--inst-primary: your brand color- Replace the FFH × ZERO Prostate Cancer × [Your Cancer Center] cobrand in the hero
- Drop in your logo PNG (white version) — same 48px height as FFH logo
📚 Evidence Base — what this course is built on
- AHRQ SHARE Approach — 5-step shared decision making framework. AHRQ Pub. 25-0005, Oct 2024. ahrq.gov/sdm
- AHRQ Health Literacy Universal Precautions Toolkit (3rd ed.) — teach-back, plain language, accessible materials. AHRQ Pub. 23-0075, March 2024.
- IOM 2005 — From Cancer Patient to Cancer Survivor: Lost in Transition — foundational survivorship framework, the Survivorship Care Plan as a lifetime artifact.
- ASCO Survivorship Guidelines — comprehensive guidance on post-treatment surveillance, late-effect management, lifestyle, and survivorship-care delivery.
- ACS / ASCO Prostate Cancer Survivorship Care Guideline — the joint ACS/ASCO guideline shaping U.S. prostate cancer survivorship practice.
- NCCN Survivorship Guidelines — late-effect monitoring, sexual function, urinary continence, ADT side effects, fatigue, sleep, mood, and lifestyle recommendations.
- AUA (American Urological Association) Guidelines — surgical, radiation, active-surveillance, and ADT management standards.
- WCRF / AICR — Diet, Nutrition, Physical Activity and Cancer — the evidence base for the modifiable lifestyle stack.
- ACSM Roundtable on Exercise and Cancer (2019/2024 update) — ≥150 min/week aerobic + 2–3× resistance per week; resistance training especially protective in ADT users.
- Health Professionals Follow-Up Study (HPFS) — Mediterranean-diet adherence associated with lower prostate-cancer-specific mortality; exercise extends survival.
- ESC / ACC Cardio-Oncology Guidelines — ADT-related cardiotoxicity surveillance and management.
- SELECT trial — high-dose vit E + selenium supplements provide no benefit (and possibly some harm) in prostate cancer prevention or survivorship.
- ZERO Prostate Cancer, Us TOO International, Prostate Cancer Foundation (PCF), AUA Patient Resources, Malecare, Imerman Angels — peer-mentor and community organizations referenced throughout this course.
- FFH Prepared Patient · Depression course & · Anxiety course (Sprint 6) — depression and anxiety prevalence elevated in survivors, especially on ADT; cross-referenced from this course's Module 7, NOT embedded.
- FFH Prepared Patient · Hypertension / Type-2 Diabetes / CKD courses — the unified cluster courses whose canonical Module 7 (MD5 7587a559b24ca8b9bab40b1756475d84) is CROSS-REFERENCED from this course's Module 7 for the metabolic-syndrome / cardiovascular overlap (ADT amplifies cluster risk; long-term survivors often die of CV disease > prostate cancer), NOT embedded or modified.
- Stanford Chronic Disease Self-Management Program (CDSMP) — peer-led, self-efficacy backbone of the Tier 3 advocacy work.
Course content is educational and not a substitute for medical advice from your own clinicians. Institutions cloning this course are responsible for accuracy of all customized blocks.