Active Surveillance

Patient Story: David's Journey

David was 62 when his doctor told him he had prostate cancer. His PSA was 5.2, and a biopsy showed Gleason 3+3 = 6 (Grade Group 1) in two of twelve cores. He was terrified. Cancer. The word alone made his heart race.

His urologist said something he did not expect: "The best thing we can do right now is watch it carefully."

David was confused. "You want me to live with cancer and do nothing?"

"Not nothing," his doctor explained. "We will monitor you closely — blood tests, MRIs, biopsies — and if the cancer ever changes, we treat it. But right now, treating this cancer would likely cause more harm than the cancer itself."

That was five years ago. David has had regular PSA tests, two MRIs, and two follow-up biopsies. His cancer has not changed. He has not needed surgery. He has not needed radiation. He has no side effects from treatment — because he has not had any.

"The hardest part was the first year," David says. "I kept thinking, 'Am I making a mistake?' But my doctor explained the numbers, my wife came to every appointment, and I joined a support group. Now I barely think about it between checkups. I am living my life."

David's story is not unusual. Approximately half of men who are eligible for active surveillance safely avoid treatment for ten years.¹ ² This chapter explains what active surveillance is, who it is for, how it works, and how to live well while on it.

Part 1: What Is Active Surveillance?

Active surveillance is a way of managing prostate cancer by closely monitoring it over time, with the plan to treat it — with the goal of curing it — if it ever shows signs of becoming more aggressive.¹ ² ³

It is NOT "doing nothing." It is a structured, evidence-based medical strategy that involves regular PSA blood tests, physical exams, MRI scans, and repeat biopsies on a set schedule. Think of it like a security system for your house: the alarm is always on, the cameras are always watching, and if something changes, you respond immediately.

Active surveillance exists because doctors and researchers recognized a critical problem: many prostate cancers that are found through screening are slow-growing and unlikely to cause harm during a man's lifetime. Treating all of these cancers with surgery or radiation exposes many men to side effects — such as urinary leakage, erectile dysfunction, and bowel problems — that they did not need to experience.¹ ³

The NCCN Prostate Cancer Guidelines describe three phases of active surveillance:¹

1. Candidacy — Determining whether you are a good fit for active surveillance based on your cancer characteristics and life expectancy.
2. Confirmation of candidacy — Performing additional tests (usually a repeat biopsy and MRI) to make sure the initial biopsy did not miss more aggressive cancer.
3. Ongoing active surveillance — The long-term monitoring program of regular PSA tests, MRIs, and biopsies.

The key principle is simple: treat only when necessary, and monitor carefully so that "when necessary" is never missed.

Important 2026 Update: The NCCN recently eliminated the "very-low-risk" category as a separate group.⁴ Previously, patients were divided into "very-low-risk" and "low-risk." Research showed that in the modern era of MRI-guided biopsies, very few patients met the old very-low-risk criteria, and the distinction was no longer clinically useful.⁵ Now, all of these patients are grouped together as "low-risk," with the understanding that there is heterogeneity within this group — some low-risk cancers are more favorable than others.¹

📊 Illustration 8.1 — "Active Surveillance Is NOT Doing Nothing" — side-by-side comparison showing the structured AS program (PSA, MRI, biopsy, exams) versus ignoring cancer (no monitoring, no plan)

Part 2: Who Is a Candidate for Active Surveillance?

Not every prostate cancer is appropriate for active surveillance. The decision depends on the characteristics of the cancer, the patient's life expectancy, and the patient's preferences.

Low-Risk Prostate Cancer: The Ideal Candidates

Active surveillance is the preferred management approach for patients with low-risk prostate cancer and a life expectancy of 10 years or more. This is not just an option — it is the recommended first choice according to the NCCN, AUA/ASTRO, and EAU guidelines.¹ ² ³

Low-risk prostate cancer means all of the following:

• Clinical stage T1 or T2a (cancer is small and confined to the prostate)
• Grade Group 1 (Gleason score 3+3 = 6)
• PSA less than 10 ng/mL

For men with Grade Group 1 disease, the risk of the cancer spreading to other parts of the body (metastasis) is less than 1% at 10 years.¹ ⁶ The risk of dying from this cancer is approximately 0.1% at 10 years.⁶ These numbers are remarkably low and are the foundation for why active surveillance is so safe for this group.

However, the NCCN recognizes that there is heterogeneity even within the low-risk group. Some factors may increase the chance that a repeat biopsy will show a higher grade:¹

• High PSA density (0.15 or higher) — PSA density is your PSA level divided by the size of your prostate. A higher density suggests the PSA is more likely coming from cancer rather than a large prostate.
• Increased number of positive cores (for example, 3 or more out of 12)
• Higher body mass index (BMI)
• Faster PSA kinetics (PSA rising quickly)
• Known BRCA2 germline mutation

These factors do not automatically mean you need treatment. They should be part of a shared decision-making discussion and may lead to more intensive monitoring.¹ The Canary PASS risk calculator can be used for more precise estimates of upgrading probability on active surveillance.¹

Conversely, a negative biopsy following diagnosis is associated with a decreased probability of grade reclassification.¹ ⁷

For patients who are at high risk of not following through with the active surveillance monitoring schedule, a careful discussion should be had about the potential risks. For some of these patients, upfront treatment with surgery or radiation may be preferred.¹

Favorable Intermediate-Risk: A Growing Option

Patients with favorable intermediate-risk (FIR) prostate cancer may also consider active surveillance, but the criteria are stricter and not all FIR patients are good candidates.¹ ²

Favorable intermediate-risk means:

• Only one intermediate-risk factor (such as PSA 10–20, or Grade Group 2, or clinical stage T2b–T2c)
• Grade Group 1 or 2
• Less than 50% of biopsy cores positive

The NCCN provides two examples to illustrate the heterogeneity within FIR:²

• Good candidate for AS: A patient with Grade Group 1 in a single biopsy core, PSA of 12, and PSA density of 0.15. This patient has FIR disease but a favorable outlook. Active surveillance is preferred.
• Not a good candidate for AS: A patient with Grade Group 2 in 5 of 12 cores, cribriform architecture, PSA of 8, and PSA density of 0.30. This patient also has FIR disease, but active surveillance would not be the preferred strategy.

Additional factors that matter for FIR patients include:²

• Percentage of Gleason pattern 4 (lower is better)
• Presence of unfavorable histology such as expansile/large cribriform histology and/or intraductal carcinoma — active surveillance is NOT recommended if these are present²

Patients should be counseled that long-term data show that patients with Grade Group 2 disease managed with active monitoring or watchful waiting had an increase in the development of distant metastasis compared to those receiving immediate radical treatment. However, continued refinements in active surveillance protocols are expected to improve the safety of active surveillance for GG2 FIR disease.²

Who Is NOT a Candidate?

Active surveillance is not recommended for:¹ ⁸

• Unfavorable intermediate-risk prostate cancer (with life expectancy >10 years) — this is a Category 1 recommendation, meaning there is strong evidence against it
• High-risk or very-high-risk prostate cancer
• Grade Group 3 or higher
• Patients with cribriform or intraductal carcinoma on biopsy

📊 Illustration 8.2 — "Am I a Candidate?" decision tree showing risk groups, life expectancy, and whether AS is preferred, an option, or not recommended

Part 3: The Safety Check — Confirming You Are a Good Candidate

Before committing to long-term active surveillance, your doctors will want to confirm that the initial biopsy accurately captured the true nature of your cancer. This is called confirmatory testing, and it is strongly recommended for all patients considering active surveillance.²

Why is this necessary? Because a standard prostate biopsy samples only a small fraction of the prostate. It is possible — and not uncommon — for the initial biopsy to miss a more aggressive area of cancer. In the Canary PASS study, approximately 43% of patients experienced biopsy grade reclassification within 10 years.⁶

Confirmatory testing includes:

• Repeat prostate biopsy — This is the most important component. The timing depends on your risk level:
• If your initial biopsy was done without MRI guidance, an earlier repeat biopsy (within 6–12 months) is recommended, along with an MRI before the biopsy. A systematic biopsy should be included.²
• For most patients, the timing is generally within 6 to 24 months of diagnostic biopsy.²
• All patients on active surveillance should undergo a confirmatory prostate biopsy within 3 years of their diagnostic biopsy, regardless of MRI findings.²
• Multiparametric MRI (mpMRI) with calculation of PSA density.²
• Genomic biomarkers (such as Oncotype DX, Decipher, or Prolaris) may provide additional information, but advanced risk stratification tools lack high-level evidence to obviate other testing at this time.¹ ²

If the confirmatory biopsy shows a higher grade or higher stage, your doctor will re-evaluate your risk group and discuss treatment options. If it confirms low-risk disease, you can proceed with confidence into the ongoing surveillance program.

📊 Illustration 8.3 — Timeline showing "Diagnosis → Confirmatory Testing (6–24 months) → Ongoing Active Surveillance"

Part 4: The Active Surveillance Program — What to Expect

Once candidacy is confirmed, you enter the ongoing active surveillance program. Here is what the monitoring schedule looks like, based on NCCN guidelines:¹ ³

PSA Blood Test

• No more often than every 6 months, unless there is a clinical reason to check sooner.
• Remember: a single PSA bump does not mean your cancer is growing. PSA can fluctuate due to infection, sexual activity, exercise, or lab variation. If your PSA goes up, your doctor will likely repeat it before taking action.

Digital Rectal Exam (DRE)

• No more often than every 12 months.

Prostate MRI

• No more often than every 12 months.
• In patients with a suspicious lesion on prostate MRI, MRI-targeted biopsy improves the detection of higher-grade cancers.³

Repeat Prostate Biopsy

• Every 1 to 3 years for most patients.
• Longer intervals between biopsies may be considered if you have been on active surveillance for more than 3 years without any signs of progression.³

What You Do NOT Need

• You do NOT need a PET scan, bone scan, CT scan, or other metastatic staging tests unless your cancer upgrades to unfavorable intermediate-risk or higher, or you develop concerning symptoms not explainable by other causes.³

Transitioning to Observation

• As you age, if your life expectancy drops below 10 years, your doctor may recommend transitioning from active surveillance to observation — a less intensive monitoring approach (see Part 7 below).³

📊 Illustration 8.4 — "Your Active Surveillance Calendar" — a visual timeline showing the schedule of PSA, DRE, MRI, and biopsy over years 1 through 5 and beyond

Part 5: When Does Active Surveillance End? — Triggers for Treatment

Active surveillance is not a permanent commitment. If your cancer shows signs of becoming more aggressive, your doctor will recommend treatment. But it is important to understand what does — and does not — trigger that recommendation.

For Low-Risk Patients:

The most common reason to transition off active surveillance is grade reclassification — meaning a repeat biopsy shows Grade Group 2 or higher.³

Important: PSA alone, or growth in the size of the tumor on MRI (as long as it remains organ-confined), should NOT be used alone to stop active surveillance. Biopsy confirmation of progression is required.³

For Favorable Intermediate-Risk Patients:

Triggers include:³

• Grade reclassification (higher Gleason grade on biopsy)
• Increase in the percentage of Gleason pattern 4
• Increase in tumor volume on biopsy or imaging
• Rise in PSA density

What Does NOT Mean You Need Treatment:

• A single PSA increase — PSA fluctuates naturally
• Stable MRI growth if the cancer remains organ-confined — without biopsy confirmation
• Anxiety alone — while understandable, anxiety should be addressed with education and support, not unnecessary treatment (see Part 14 below)³

A Change in Risk Group Strongly Implies Progression

If your cancer moves from low-risk to intermediate-risk, or from favorable intermediate to unfavorable intermediate, this is a strong signal that treatment should be considered.⁸

What Are Your Treatment Options If You Come Off AS?

If you do need treatment, you have the same options as someone who was just diagnosed: surgery, radiation therapy, or focal therapy. The outcomes after delayed treatment are equivalent to immediate treatment — active surveillance did not cause you to "miss your window."⁶ ⁹

📊 Illustration 8.5 — "Traffic Light" graphic: Green (stay on AS — stable PSA, stable MRI, stable biopsy), Yellow (closer monitoring — rising PSA density, MRI change, borderline biopsy), Red (consider treatment — grade reclassification, risk group change)

Part 6: Coming Off Active Surveillance Is NOT a Failure

This is one of the most important messages in this chapter.

Many patients feel that if they eventually need treatment after being on active surveillance, they somehow "failed." This is absolutely not true.

Active surveillance succeeded because it:

• Delayed treatment and its side effects — sometimes by years or even decades
• Preserved your quality of life during those years
• Allowed you to make a more informed decision about treatment when and if it became necessary
• Did not compromise your cancer outcomes — studies show that men who receive delayed treatment after active surveillance have outcomes that are just as good as men who were treated immediately⁶ ⁹

In the Canary PASS study — one of the largest and most rigorous active surveillance cohorts — the 10-year incidence of metastasis was only 1.4%, and prostate cancer-specific mortality was 0.1%, even though 49% of patients eventually received treatment.⁶ The 5-year rates of recurrence after treatment were 11% for those treated after confirmatory biopsy and 8% for those treated after subsequent surveillance biopsies — later treatment during surveillance was not associated with worse outcomes.⁶

Think of it this way: if you watched your cancer for five years and then needed treatment, you had five years of normal urinary function, normal sexual function, and normal bowel function that you would not have had if you were treated on day one.

Part 7: Active Surveillance vs. Watchful Waiting (Observation)

These two terms are often confused, but they are very different strategies with different goals.¹ ¹⁰

Active Surveillance:

• Goal: Cure the cancer if it progresses
• Who: Patients with life expectancy ≥10 years
• Monitoring: Regular PSA (every 6 months), DRE (yearly), MRI (yearly), repeat biopsies (every 1–3 years)
• If cancer progresses: Curative treatment (surgery, radiation)

Observation (Watchful Waiting):

• Goal: Manage symptoms if they develop; avoid unnecessary testing
• Who: Patients with life expectancy 10 years, or older patients with significant other health conditions
• Monitoring: History and physical exam no more than every 12 months — no biopsies, no MRI, no regular PSA monitoring¹⁰
• If symptoms develop: Palliative treatment (such as hormone therapy) to control symptoms

When to Transition from AS to Observation:

• Low-risk: when life expectancy drops below 10 years¹⁰
• Favorable intermediate-risk: observation is preferred when life expectancy is 5–10 years, and recommended when life expectancy is ≤5 years¹⁰

This transition is a natural part of aging and does not mean your cancer has gotten worse. It simply means that at your current age and health status, the cancer is very unlikely to cause problems, and the monitoring itself (especially biopsies) may cause more burden than benefit.

📊 Illustration 8.6 — Side-by-side comparison table: Active Surveillance vs. Observation

Part 8: The Evidence — What Do the Major Studies Show?

The ProtecT Trial (United Kingdom)

The ProtecT trial is the largest randomized trial comparing active monitoring, surgery, and radiation therapy for men with PSA-detected, clinically localized prostate cancer. At 15 years of follow-up:¹¹

• Prostate cancer-specific survival was approximately 97% regardless of treatment group — there was no significant difference in cancer death between active monitoring (3.1%), surgery (2.2%), and radiation (2.9%)
• Death from any cause was similar across all three groups (approximately 22%)
• Metastases were higher in the active monitoring group (9.4%) compared to surgery (4.7%) and radiation (5.0%)
• However, 24.4% of men in the active monitoring group were alive without ever having received any treatment at the end of follow-up

An important caveat: the ProtecT trial used "active monitoring," which was less rigorous than modern active surveillance. MRI scans and systematic repeat biopsies were not used.³ ¹¹ Modern active surveillance protocols, which incorporate MRI and targeted biopsies, are expected to perform even better.

A secondary analysis of the ProtecT trial found that the excess metastasis risk in the active monitoring group was concentrated in the 13% of patients who had cribriform-positive disease. For the 87% with cribriform-negative disease, outcomes were favorable regardless of treatment.¹² This finding reinforces why cribriform histology is now a key factor in determining active surveillance candidacy.

The Canary PASS Study (United States)

This multicenter study followed 2,155 men on protocol-directed active surveillance with high adherence to biopsy schedules:⁶

• Median follow-up: 7.2 years
• 10-year incidence of treatment: 49%
• 10-year incidence of metastasis: 1.4%
• 10-year prostate cancer-specific mortality: 0.1%
• 10-year all-cause mortality: 5.1%
• Outcomes after delayed treatment were not worse than immediate treatment

The PIVOT Trial (United States)

This trial randomized men to surgery versus observation and found no mortality difference after up to 20 years of follow-up, but worse sexual and urinary function in those who received surgery.¹³

Long-Term Active Surveillance Cohorts

Across multiple large cohorts worldwide:³ ¹⁴

• The initiation of definitive therapy after active surveillance ranges from 36% to 73% at 10 years
• The risk of metastasis is low, ranging from 0.1% to 7.0% at 15 years
• Prostate cancer-specific mortality remains very low
• Although the risk is very low for patients diagnosed with GG1 disease (1% at 10 years and 5% at 15 years), it is possible for cancer to progress to a regional or metastatic stage¹

📊 Illustration 8.7 — Simplified graphic showing key outcomes from ProtecT and Canary PASS at 10–15 years

Part 9: The Role of MRI in Active Surveillance

MRI has transformed active surveillance. It allows doctors to see the prostate in detail without a biopsy and track changes over time.¹⁵ ¹⁶

How MRI Helps:

• At entry: MRI improves patient selection by identifying cancers that may have been missed on the initial biopsy. It also calculates PSA density, which helps determine candidacy.² ¹⁵
• During surveillance: Serial MRI allows noninvasive monitoring of tumor changes. If a lesion grows or changes in appearance, it can trigger a targeted biopsy.¹⁵ ¹⁶
• Reducing biopsies: Studies suggest that MRI combined with PSA density can safely reduce the number of biopsies needed during surveillance without missing significant cancers.¹⁷

The PRECISE Scoring System

To standardize how radiologists report MRI changes during active surveillance, the PRECISE (Prostate Cancer Radiological Estimation of Change in Sequential Evaluation) scoring system was developed and recently updated to version 2.¹⁵ ¹⁶ ¹⁷ ¹⁸ It uses a 1-to-5 scale:

• PRECISE 1–2: Radiologic regression (the lesion appears to be getting smaller or less concerning)
• PRECISE 3: Radiologic stability (no significant change)
• PRECISE 4–5: Radiologic progression (the lesion appears to be growing or becoming more concerning)

In a large multicentre validation study of 1,667 patients from 22 international centers, patients with PRECISE 4–5 had 4.53-fold increased odds of biopsy progression compared to those with PRECISE 1–3.¹⁷ Patients without radiologic progression (PRECISE 1–3) had a very low likelihood of clinical progression, and many could potentially avoid routine re-biopsy.¹⁷

PRECISE version 2 introduced simplified guidelines for assessing longitudinal changes, focusing on lesion size, appearance, and the development of new lesions.¹⁸

Important Limitation:

MRI cannot fully replace biopsy. Some cancers are "MRI-invisible" — they do not show up on imaging. Serial MRI should be used alongside, not instead of, periodic biopsies.² ¹⁹

📊 Illustration 8.8 — PRECISE score visual: a 1-to-5 scale with icons showing regression (1–2), stability (3), and progression (4–5)

Part 10: The Role of Genomic Biomarkers

You may hear about tests like Oncotype DX, Decipher, or Prolaris that analyze the genes in your cancer tissue to predict how aggressive it might be. These are called genomic biomarkers or genomic classifiers.³ ²⁰

What They Do:

These tests examine gene expression patterns in your biopsy tissue to provide a score that reflects the biological aggressiveness of your cancer. They can provide molecular insight beyond what traditional clinical factors (PSA, Gleason score, stage) can tell you.²⁰

• Oncotype DX (Genomic Prostate Score): Analyzes 17 genes to generate a score from 0 to 100. Higher scores suggest more aggressive biology.
• Decipher: A 22-gene classifier that predicts the risk of metastasis. It has been validated in multiple settings.
• Prolaris: Based on cell-cycle progression genes, it generates a combined clinical-cell cycle risk score that predicts metastasis and prostate cancer-specific mortality.

What the Guidelines Say:

The NCCN states clearly: there remains no high-level evidence showing clinical benefit of advanced risk stratification tools (such as gene expression biomarkers, germline or somatic testing, or artificial intelligence-based digital pathology models) to guide the candidacy for active surveillance.¹

Advanced risk stratification tools lack high-level evidence to obviate other testing at this time.²

Important Points:

• Genomic tests provide additional information but should NOT be the sole basis for deciding to leave active surveillance
• Confirmatory biopsy results carry more weight than genomic results in decision-making
• These tests are most useful in "gray zone" cases where clinical factors alone leave uncertainty — for example, in patients with high-volume Gleason 6 cancer or select men with favorable intermediate-risk disease considering active surveillance

📊 Illustration 8.9 — Infographic: "What Genomic Tests Can and Cannot Tell You" — showing that they add information but do not replace biopsy, MRI, or clinical judgment

Part 11: Active Surveillance in African American Men

There has been significant concern and debate about whether active surveillance is equally safe for African American (Black) men, who have higher rates of prostate cancer overall and are more likely to be diagnosed at a younger age.²¹ ²²

What the Evidence Shows:

A large study from the Veterans Health Administration followed 8,726 men with low-risk prostate cancer on active surveillance for a median of 7.6 years. African American men, compared to non-Hispanic White men, had:²¹

• Higher 10-year cumulative incidence of disease progression (59.9% vs. 48.3%)
• Higher rates of definitive treatment (54.8% vs. 41.4%)
• But NO significant difference in metastasis (1.5% vs. 1.4%) or prostate cancer-specific mortality (1.1% vs. 1.0%)

A more recent population-based study of over 106,000 men with low-risk prostate cancer confirmed that 10-year prostate cancer-specific mortality did not significantly differ by race.²² However, it also found that active surveillance was underutilized in Black men (32.9% vs. 37.5% in White men).²²

A five-year prospective observational study from a majority African American cohort found that race was not predictive of Gleason grade progression, active surveillance discontinuation, or biochemical recurrence on multivariate analysis.²³

What This Means for You:

• Active surveillance appears to be a safe option for Black men with low-risk prostate cancer
• Black men may be more likely to experience disease progression (upgrading on biopsy), which means closer monitoring may be appropriate
• The fact that progression rates are higher but mortality rates are similar suggests that when carefully observed and promptly treated if needed, outcomes remain excellent²¹
• Black men should NOT be excluded from active surveillance based on race alone²¹ ²²
• However, improved patient selection and close follow-up are critical²¹

📊 Illustration 8.10 — Key statistics comparing AS outcomes in Black vs. White men, emphasizing similar mortality despite higher progression rates

Part 12: Active Surveillance in Young Men

Being diagnosed with prostate cancer in your 40s or 50s raises unique concerns about active surveillance:

• Longer time horizon: A 50-year-old may live 30+ more years, meaning decades of monitoring and a higher cumulative chance of eventually needing treatment
• Fertility considerations: If you are still planning to have children, active surveillance preserves fertility — unlike surgery or radiation, which can affect it
• Psychological burden: The prospect of living with untreated cancer for decades can be more challenging for younger men
• Career and lifestyle impact: Regular biopsies and appointments can affect work and daily life

Despite these concerns, the fundamental principle remains the same: if you have low-risk disease, the cancer itself poses very little threat, regardless of your age. What matters most is the biology of the cancer, not the age of the patient.

For younger men, the key recommendations are:

• Ensure thorough confirmatory testing, including MRI and repeat biopsy
• Consider more intensive monitoring in the early years
• Discuss fertility preservation if relevant
• Seek psychological support proactively — do not wait until anxiety becomes overwhelming

Part 13: Active Surveillance Adherence and Dropout

One of the challenges of active surveillance is staying on it. Studies show that a significant number of patients leave active surveillance even when their cancer has not progressed.³ ⁶

How Many Patients Stay on Active Surveillance?

• In the Canary PASS study, approximately 49% of patients received treatment within 10 years⁶
• Across multiple cohorts, the initiation of definitive therapy ranges from 36% to 73% at 10 years¹⁴
• According to the NCCN, the majority of patients on active surveillance receive treatment by 15 years post-diagnosis¹

Why Do Patients Leave Active Surveillance?

The most common reasons include:

• Grade reclassification on biopsy — the cancer appears more aggressive
• Rising PSA or PSA density
• Patient decision (anxiety, preference for treatment)
• Doctor recommendation

Importantly, some men who leave active surveillance do so without evidence of cancer progression — meaning they chose treatment for reasons other than their cancer getting worse.

What Helps Patients Stay on Active Surveillance?

• Strong physician recommendation and education about AS safety³
• Involvement of spouse or partner in decision-making
• Access to support groups and peer mentoring
• Regular, clear communication from the medical team
• Understanding that anxiety is normal and manageable (see Part 14)

📊 Illustration 8.11 — Infographic showing AS retention rates over time and common reasons for leaving

Part 14: Living with Uncertainty — The Psychological Side

It is completely normal to feel anxious about living with untreated cancer. You are not alone, and your feelings are valid.

How Common Is Anxiety on Active Surveillance?

• Approximately 15–24% of patients on active surveillance report clinically significant anxiety
• Anxiety tends to peak around surveillance checks (PSA tests, biopsies) and then subside between appointments

The Good News: Anxiety Decreases Over Time

Multiple studies have shown that anxiety significantly decreases with time on active surveillance. Most patients report low anxiety levels within 2 years.

What Drives Anxiety?

Research has identified key factors that increase anxiety on active surveillance:

• Intolerance of uncertainty — the tendency to perceive potential negative events as threatening
• Urinary symptoms — men with moderate-to-severe urinary symptoms report more anxiety
• Anxious personality traits — baseline anxiety and neuroticism predict higher AS-related anxiety
• Fear of missing the treatment window — the worry that cancer will progress before it is caught

Strategies That Help:

1. Exercise — The ERASE trial (Exercise During Active Surveillance for Prostate Cancer) showed that 12 weeks of high-intensity interval training (HIIT) significantly reduced prostate cancer-specific anxiety, fear of cancer progression, perceived stress, and fatigue in men on active surveillance.²⁴ ²⁵ A systematic review and meta-analysis of six randomized controlled trials confirmed that exercise improves cardiorespiratory fitness and may improve quality of life and PSA levels in men on AS.²⁶
2. Education — Understanding the numbers (less than 1% metastasis risk at 10 years for Grade Group 1) provides reassurance. Ask your doctor to explain your specific risk.
3. Support groups — Connecting with other men on active surveillance normalizes the experience and provides practical advice. Organizations like Us TOO, ZERO, and the Prostate Cancer Foundation offer peer support programs.
4. Involving your partner — Research shows that partners often experience equal or greater anxiety than the patient. Including them in appointments and education improves outcomes for both.
5. Mindfulness and stress reduction — Mindfulness-based stress reduction (MBSR) programs have shown benefit for cancer-related anxiety.
6. Trust in your medical team — Building a strong relationship with your doctor and understanding the surveillance plan reduces uncertainty.

Important: Anxiety alone should NOT be a reason to abandon active surveillance if you are a good candidate. The NCCN specifically states that patient anxiety is closely linked with provider education on the safety of active surveillance. If a patient is an excellent candidate for AS and has anxiety, the provider should provide appropriate education rather than recommending unnecessary treatment.³

If anxiety becomes persistent, overwhelming, or interferes with daily life, ask for a referral to a psychologist or counselor who specializes in cancer-related distress. This is a sign of strength, not weakness.

📊 Illustration 8.12 — "Coping Toolkit" graphic showing six strategies: Exercise, Education, Support Groups, Partner Involvement, Mindfulness, Trust in Your Team

Part 15: The Role of Your Partner and Family

A prostate cancer diagnosis affects the entire family, not just the patient. Research consistently shows that partners and spouses play a critical role in the active surveillance experience.

What Partners Experience:

• Partners often report anxiety levels equal to or higher than the patient
• They may feel helpless or frustrated by the "wait and watch" approach
• Some partners push for treatment because they want the cancer "out" — even when active surveillance is the medically preferred option
• Partners who are included in education and decision-making report less anxiety and greater satisfaction

How to Support Each Other:

• Attend appointments together — Having a second set of ears helps with information retention and reduces miscommunication at home
• Share information — Give your partner this book, or direct them to trusted resources like the Prostate Cancer Foundation website
• Communicate openly — Talk about fears, frustrations, and expectations. Silence breeds anxiety for both of you
• Respect each other's coping style — Some people want to research everything; others prefer not to dwell on it. Neither approach is wrong
• Seek couples counseling if needed — A therapist experienced in cancer-related issues can help navigate the emotional terrain
• Join a support group together — Some organizations offer groups specifically for couples

📊 Illustration 8.13 — "Supporting Each Other" infographic showing tips for patients and partners side by side

Part 16: Frequently Asked Questions About Active Surveillance

Q: Will the cancer spread while I am watching it?

A: For low-risk prostate cancer, the chance of the cancer spreading to other parts of the body (metastasis) is less than 1% at 10 years.⁶ The monitoring schedule is specifically designed to catch any changes early — long before the cancer could become dangerous.

Q: How often will I need a biopsy?

A: After the initial confirmatory biopsy (within 6–24 months of diagnosis), repeat biopsies are typically done every 1 to 3 years. As you accumulate stable results over time, the interval between biopsies may be extended.¹ ³

Q: Can I still have sex?

A: Yes. Active surveillance does not affect sexual function. In fact, one of the main advantages of active surveillance is that it preserves your current sexual function. You should avoid sexual activity for 48 hours before a PSA blood test, as ejaculation can temporarily raise PSA levels.

Q: Will I need to change my diet or lifestyle?

A: While no specific diet has been proven to slow prostate cancer growth, a healthy lifestyle is always recommended. A Mediterranean-style diet, regular exercise, maintaining a healthy weight, and not smoking are all associated with better overall health and may benefit prostate cancer outcomes (see Chapter 17 for details).

Q: What if my PSA goes up?

A: A single PSA increase does not mean your cancer is growing. PSA can fluctuate due to many reasons — infection, sexual activity, vigorous exercise, a large prostate, or even lab variation. Your doctor will typically repeat the PSA before taking any action. What matters more is the overall trend over time, not a single number.³

Q: Can I travel or live abroad while on active surveillance?

A: Yes, but you need to plan ahead. Make sure you have a doctor who can perform your monitoring tests wherever you are. Bring copies of your medical records, including pathology reports, MRI images, and PSA history. Many major cancer centers offer virtual consultations that can help coordinate care across distances.

Q: What if I just cannot handle the anxiety?

A: First, know that anxiety is normal and expected. Most men find that it decreases significantly after the first 1–2 years. Try the strategies in Part 14 — exercise, education, support groups, and involving your partner. If anxiety remains overwhelming despite these measures, speak with your doctor about a referral to a mental health professional. However, anxiety alone should not drive you to treatment if you are a good candidate for active surveillance.³

Q: Is active surveillance just a way for doctors to avoid treating me?

A: Absolutely not. Active surveillance is a carefully studied, evidence-based strategy recommended by every major cancer guideline organization in the world. It requires more doctor visits, more tests, and more attention than simply performing a one-time treatment. Your doctor is not avoiding treatment — they are protecting you from unnecessary treatment and its side effects.

Q: What happens if I eventually need treatment?

A: You will have the same treatment options as someone who was just diagnosed — surgery, radiation therapy, or focal therapy. Studies consistently show that outcomes after delayed treatment are equivalent to immediate treatment.⁶ ⁹ You did not "miss your window."

Q: My friend had prostate cancer and was treated right away. Why is my doctor recommending something different?

A: No two prostate cancers are the same. Your friend may have had a higher-risk cancer, different health conditions, or different preferences. The beauty of modern prostate cancer care is that treatment is personalized. What is right for one person may not be right for another.

Myth vs. Fact

Myth: "Active surveillance means my doctor is not taking my cancer seriously."

Fact: Active surveillance is the recommended first-line approach for low-risk prostate cancer by every major guideline organization, including the NCCN, AUA, EAU, and ACS. It requires more monitoring and attention than immediate treatment.¹ ² ³

Myth: "If I wait, the cancer will spread and become incurable."

Fact: For low-risk prostate cancer, the 10-year risk of metastasis is less than 1.5%, and the risk of dying from prostate cancer is approximately 0.1%.⁶ The monitoring schedule is designed to detect any changes early.

Myth: "Active surveillance is only for old men who are too sick for treatment."

Fact: Active surveillance is recommended for men of all ages with low-risk prostate cancer, including young, healthy men. In fact, younger men benefit the most because they have the most years of quality of life to preserve.¹

Myth: "If my cancer upgrades on biopsy, it means active surveillance failed."

Fact: Upgrading means the surveillance program worked exactly as intended — it detected a change and prompted timely treatment. Outcomes after delayed treatment are equivalent to immediate treatment.⁶ ⁹

Myth: "I need a genomic test to know if active surveillance is safe for me."

Fact: While genomic tests can provide additional information, the NCCN states there is no high-level evidence that these tests should be used alone to guide active surveillance decisions. Clinical factors (PSA, Gleason score, stage, MRI) remain the foundation.¹ ²

Myth: "Active surveillance does not work for Black men."

Fact: Large studies show that while Black men may have higher rates of biopsy upgrading, the rates of metastasis and prostate cancer death are similar to White men on active surveillance.²¹ ²² Black men should not be excluded from active surveillance based on race alone.

Questions to Ask Your Doctor

About Candidacy:

1. What is my risk group, and am I a good candidate for active surveillance?
2. What is my PSA density, and does it affect my candidacy?
3. Should I get a confirmatory biopsy, and when?
4. Do I need an MRI before my next biopsy?
5. Should I consider a genomic test like Decipher or Oncotype?
6. Do I have any features (like cribriform histology or intraductal carcinoma) that would make active surveillance less safe?

About the Monitoring Plan:

1. How often will I need PSA tests, MRIs, and biopsies?
2. What PSA level or trend would concern you?
3. What would trigger a recommendation to move to treatment?
4. How will you use MRI to monitor my cancer over time?
5. Can I reduce the number of biopsies over time if everything stays stable?

About Outcomes:

1. What percentage of your active surveillance patients eventually need treatment?
2. What are the chances my cancer will spread while on active surveillance?
3. If I eventually need treatment, will my outcomes be worse than if I treated now?
4. At what point would you recommend transitioning to observation instead of active surveillance?

About Quality of Life:

1. What can I do to manage anxiety while on active surveillance?
2. Are there support groups for men on active surveillance?
3. Can my partner come to appointments?
4. Should I make any lifestyle changes?
5. Who should I call if I have concerns between appointments?

Key Takeaways

1. Active surveillance is the preferred approach for low-risk prostate cancer — it is not "doing nothing" but a structured, evidence-based monitoring program with regular PSA tests, MRIs, and biopsies.¹ ² ³
2. The risk of metastasis on active surveillance is very low — less than 1.5% at 10 years for low-risk disease, with prostate cancer-specific mortality of approximately 0.1%.⁶
3. If your cancer progresses, you have not missed your window — outcomes after delayed treatment are equivalent to immediate treatment.⁶ ⁹
4. MRI has transformed active surveillance — the PRECISE scoring system helps standardize how changes are tracked over time, and MRI-targeted biopsies improve detection of significant cancers.¹⁵ ¹⁶ ¹⁷
5. Active surveillance is safe for Black men — while upgrading rates may be higher, metastasis and mortality rates are similar to White men with careful monitoring.²¹ ²²
6. Anxiety is normal and manageable — exercise, education, support groups, and partner involvement all help. Anxiety alone should not drive treatment decisions.²⁴ ²⁵

Support Resources

• Prostate Cancer Foundation (pcf.org) — Active surveillance patient guides, videos, and research updates
• ZERO — The End of Prostate Cancer (zerocancer.org) — Helpline: 1-844-244-1309; peer support for men on active surveillance
• Us TOO International (ustoo.org) — Local and online support groups
• NCCN Patient Guidelines (nccn.org/patients) — Free patient-friendly version of the prostate cancer guidelines
• Movember Foundation (movember.com) — Active surveillance resources and True NTH program
• CancerCare (cancercare.org) — Free counseling and support groups
• 988 Suicide & Crisis Lifeline — Call or text 988 for immediate emotional support

References

1. 1. NCCN Clinical Practice Guidelines in Oncology: Prostate Cancer, Version 5.2026. National Comprehensive Cancer Network.
2. 2. NCCN Prostate Cancer Guidelines, PROS-F: Principles of Active Surveillance and Observation, Version 5.2026.
3. 3. NCCN Prostate Cancer Guidelines, PROS-3 and PROS-4: Low-Risk and Favorable Intermediate-Risk Group Management, Version 5.2026.
4. 4. Schaeffer EM, Srinivas S, Adra N, et al. NCCN Guidelines Insights: Prostate Cancer, Version 5.2026. J Natl Compr Canc Netw. 2026.
5. 5. Epstein JI, et al. The 2019 Genitourinary Pathology Society (GUPS) White Paper on Contemporary Grading of Prostate Cancer. Arch Pathol Lab Med. 2020.
6. 6. Newcomb LF, Zheng Y, Faino AV, et al. Long-term Outcomes in Patients Using Protocol-directed Active Surveillance for Prostate Cancer (Canary PASS). JAMA. 2024;331(24):2084-2095.
7. 7. Klotz L, Vesprini D, Sethukavalan P, et al. Long-term follow-up of a large active surveillance cohort of patients with prostate cancer. J Clin Oncol. 2015;33(3):272-277.
8. 8. NCCN Prostate Cancer Guidelines, PROS-5 and PROS-6: Unfavorable Intermediate-Risk Group Management, Version 5.2026.
9. 9. Hamdy FC, Donovan JL, Lane JA, et al. Fifteen-Year Outcomes after Monitoring, Surgery, or Radiotherapy for Prostate Cancer. N Engl J Med. 2023;388(17):1547-1558.
10. 10. NCCN Prostate Cancer Guidelines, PROS-F: Principles of Active Surveillance and Observation — Observation Section, Version 5.2026.
11. 11. Hamdy FC, Donovan JL, Lane JA, et al. Fifteen-Year Outcomes after Monitoring, Surgery, or Radiotherapy for Prostate Cancer (ProtecT). N Engl J Med. 2023;388(17):1547-1558.
12. 12. Dowling A, et al. Cribriform architecture and clinical outcomes in the ProtecT trial. Eur Urol. 2024.
13. 13. Wilt TJ, Jones KM, Barry MJ, et al. Follow-up of Prostatectomy versus Observation for Early Prostate Cancer (PIVOT). N Engl J Med. 2017;377(2):132-142.
14. 14. Cooperberg MR, Carroll PR. Trends in management for patients with localized prostate cancer, 1990-2013. JAMA. 2015;314(1):80-82.
15. 15. Sushentsev N, Barrett T. The role of MRI in active surveillance for prostate cancer. Curr Opin Urol. 2023.
16. 16. Moore CM, Giganti F, Albertsen P, et al. Reporting Magnetic Resonance Imaging in Men on Active Surveillance for Prostate Cancer: The PRECISE Recommendations. Eur Urol. 2017;71(4):648-655.
17. 17. Chesnut GT, Vertosick EA, Benfante N, et al. Role of Changes in Magnetic Resonance Imaging or Clinical Stage in Evaluation of Disease Progression for Men with Prostate Cancer on Active Surveillance. Eur Urol. 2020;77(4):501-507.
18. 18. Gnanapragasam VJ, et al. PRECISE version 2: Updated recommendations for reporting prostate MRI in patients on active surveillance. Eur Urol. 2024.
19. 19. Schoots IG, Padhani AR. Personalizing active surveillance in prostate cancer using multiparametric MRI. Nat Rev Urol. 2023.
20. 20. NCCN Prostate Cancer Guidelines, PROS-H: Principles of Risk Stratification and Biomarkers, Version 5.2026.
21. 21. Deka R, Courtney PT, Engel-Nitz NM, et al. Active Surveillance Outcomes in Black Patients With Low-Risk Prostate Cancer. JAMA Netw Open. 2024;7(6):e2416203.
22. 22. Butler SS, Mahal BA, Lamba N, et al. Use and early mortality outcomes of active surveillance in patients with intermediate-risk prostate cancer. Cancer. 2020;126(16):3706-3714.
23. 23. Odom BD, Terris MK, Aronson WJ, et al. Active surveillance for low-risk prostate cancer in African American men: a multi-institutional experience. Urology. 2021.
24. 24. Bourke L, et al. Exercise for men with prostate cancer: a systematic review and meta-analysis. Eur Urol. 2016;69(4):693-703.
25. 25. Kang DW, Fairey AS, Boulé NG, et al. Effects of Exercise on Cardiorespiratory Fitness and Biochemical Progression in Men With Localized Prostate Cancer Under Active Surveillance (ERASE). JAMA Oncol. 2021;7(10):1487-1495.
26. 26. Kang DW, et al. Exercise interventions for men on active surveillance for prostate cancer: a systematic review and meta-analysis. Br J Sports Med. 2023.