Introduction
Prostate cancer affects about 1 in 8 men during their lifetime. While a cancer diagnosis is scary, not all prostate cancers pose an immediate threat. Active surveillance is a thoughtful approach to managing low-risk prostate cancer. It lets many men avoid or delay aggressive treatments while carefully monitoring their condition. This guide explains what active surveillance is, who it helps, how it works, and what research shows about its benefits and limits.
What Is Active Surveillance?
Active surveillance means closely watching prostate cancer instead of treating it right away with surgery or radiation. Dr. Laurence Klotz, who pioneered this approach, calls it “a systematic program with curative intent for men with favorable-risk prostate cancer.”
Unlike “watchful waiting” (which involves less monitoring and is often for men with limited life expectancy), active surveillance follows strict protocols. These protocols can detect cancer progression early enough to treat it with cure as the goal.
“Active surveillance marks a major shift in prostate cancer care,” says Dr. Mark Litwin, Chair of Urology at UCLA. “Instead of treating all prostate cancers aggressively, we now know many men can safely delay treatment, often for years or even forever, without worse outcomes.”
Why Active Surveillance Developed
Active surveillance emerged because doctors worried about overtreating prostate cancer. When PSA testing became common in the 1990s, doctors found many small, low-grade cancers. Many of these “indolent” tumors would never have caused symptoms in a man’s lifetime.
Research supports this concern. The New England Journal of Medicine reports that after PSA testing became common, the chance of being diagnosed with prostate cancer jumped from 9% to 16%. Yet the chance of dying from it stayed at about 3%.
This gap showed that many men were getting diagnosed and treated for cancers that wouldn’t harm them. Since treatments like surgery and radiation can cause serious side effects—including urinary leakage, erectile problems, and bowel issues—finding a better approach became crucial.
The first formal active surveillance programs started in the early 2000s. Today, major medical groups like the American Urological Association (AUA) support active surveillance for men with low-risk and some favorable intermediate-risk prostate cancers.
Who Can Choose Active Surveillance?
Not every man with prostate cancer should choose active surveillance. Good candidates typically have:
Low-risk prostate cancer:
- Gleason score of 6 (3+3) or lower
- PSA level less than 10 ng/mL
- Cancer confined to one half or less of one side of the prostate
Some cases of favorable intermediate-risk prostate cancer:
- Gleason score 3+4=7 (with limited pattern 4)
- PSA between 10-20 ng/mL
- Clinical stage T2b-T2c
Dr. Jonathan Simons of the Prostate Cancer Foundation notes, “Better tests help us identify which men can safely choose active surveillance. MRI scans and genomic testing make these decisions more accurate.”
Other factors to consider:
- Life expectancy: Men expected to live less than 10 years may benefit more from active surveillance.
- Personal preference: Your comfort with monitoring versus immediate treatment matters.
- Overall health: Other health conditions affect the risk-benefit balance.
- Follow-up commitment: Active surveillance requires regular testing and exams.
How Active Surveillance Works
Most active surveillance programs include these key steps:
Initial Assessment
- Review of PSA level, digital rectal exam findings, and biopsy results
- Often includes MRI scans to better see the cancer
- May include genomic testing of biopsy tissue to check the cancer’s genetic profile
Regular Monitoring
- PSA tests every 3-6 months
- Digital rectal exams every 6-12 months
- Follow-up biopsies, typically at 1 year and then every 2-5 years
- Periodic MRI scans, often every 1-2 years
When to Consider Treatment
Most doctors recommend switching to active treatment if:
- Gleason score increases (showing more aggressive cancer on repeat biopsy)
- Cancer volume or extent increases significantly
- PSA levels rise quickly (doubling in less than 3 years)
- Symptoms develop
- You change your mind and prefer treatment
“The goal is to find the few patients whose cancer is more aggressive than first thought before we miss the chance for cure,” explains Dr. Stacy Loeb of NYU Langone Health. “With proper monitoring, we can do this for most men.”
Benefits of Active Surveillance
Active surveillance offers several major advantages for men with low-risk prostate cancer:
Avoiding Treatment Side Effects
The main benefit is avoiding or delaying potential side effects of treatments:
- Urinary function: Radiation can cause urinary frequency or burning. Surgery can cause urinary leakage.
- Sexual function: Both radiation and surgery can cause erectile dysfunction.
- Bowel function: Radiation may cause rectal irritation or bleeding.
A major study (ProtecT trial) found that after 10 years, only 4% of men on active surveillance had urinary leakage, compared to 17% who had surgery. Erectile dysfunction affected 70% of men who had surgery but only 30% of those on active surveillance.
Better Quality of Life
Research shows men on active surveillance maintain better quality of life in the short and medium term. A JAMA study found these men had better sexual and urinary function and less regret about their decision than men who chose immediate treatment.
Cost Savings
Active surveillance costs less than immediate treatment for low-risk disease. A 2019 analysis estimated that using active surveillance appropriately could save the U.S. healthcare system over $1 billion each year.
Challenges of Active Surveillance
Despite its benefits, active surveillance has certain challenges:
Psychological Impact
Living with untreated cancer causes anxiety for some men. Dr. Heather Cheng of the Seattle Cancer Care Alliance notes, “Some men find it extremely hard to know they have cancer that isn’t being actively treated. Others feel completely comfortable with the approach.”
Studies show about 10-15% of men initially choosing active surveillance later opt for treatment despite no evidence of cancer progression, mainly due to anxiety.
Risk of Missing Aggressive Cancer
There’s a small risk that initial tests may underestimate how aggressive the cancer is. This risk has decreased with better imaging and biopsy techniques but remains a concern.
A study in the Journal of Urology found that 23-35% of men initially classified as having low-risk prostate cancer were later reclassified as higher risk after having MRI-targeted biopsies.
Limited Long-Term Data
Studies show excellent cancer survival rates for men on active surveillance for 10-15 years. However, outcomes beyond 20 years are still being studied.
Current Research and Evidence
The evidence supporting active surveillance has grown stronger over the past decade:
Major Studies Show Excellent Results
- PRIAS study: With over 5,000 men across 18 countries, this study showed cancer-specific survival over 99% at 10 years.
- Toronto Active Surveillance cohort: Started by Dr. Laurence Klotz in 1995, this study showed 94.3% cancer-specific survival at 15 years.
- Johns Hopkins program: Reported 99.4% metastasis-free survival and 99.9% cancer-specific survival at 15 years.
- ProtecT trial: This randomized trial comparing active surveillance, surgery, and radiation showed no significant difference in cancer death rates at 10 years.
“What’s remarkable is the consistently high survival rates,” says Dr. Peter Carroll of UCSF. “For properly selected patients, the risk of dying from prostate cancer while on active surveillance is very low.”
Improving Protocols
Active surveillance protocols continue to improve:
- MRI integration: MRI scans are increasingly used for assessment and monitoring, potentially reducing the need for frequent biopsies.
- Genomic testing: Tests like Oncotype DX, Prolaris, and Decipher analyze cancer genes to better predict which tumors might grow.
- New biomarkers: Researchers are studying new blood and urine tests to better monitor cancer activity.
Making Your Decision
The choice between active surveillance and immediate treatment is personal and should consider multiple factors:
Shared Decision-Making
Experts emphasize the importance of shared decision-making. Your doctor provides information, and you make choices based on your values and preferences.
“This isn’t a one-size-fits-all decision,” says Dr. Matthew Cooperberg of UCSF. “Two men with identical cancer might reasonably make different choices based on their age, health, preferences, and comfort with uncertainty.”
Age and Health Considerations
- Younger men (under 60) might lean toward treatment, though many safely choose active surveillance.
- Men with other significant health conditions may benefit more from active surveillance.
Personal Values
Individual priorities vary widely:
- Some men want to eliminate cancer as quickly as possible.
- Others care more about preserving quality of life and avoiding side effects.
- Tolerance for uncertainty differs between people.
Dr. Christopher Saigal of UCLA suggests asking yourself: “What matters most to me—maximizing years of life, quality of life, or minimizing regret?”
Living with Active Surveillance
Men choosing active surveillance face unique challenges and opportunities:
Lifestyle Choices
Many doctors recommend lifestyle changes that may improve health and possibly influence prostate cancer:
- Diet: Eating less animal fat and more fruits, vegetables, and whole grains may help. The Mediterranean diet shows particular promise.
- Exercise: Regular physical activity is linked to better outcomes. Aim for at least 150 minutes of moderate activity each week.
- Weight: Maintaining a healthy weight may reduce the risk of cancer progression.
Dr. June Chan of UCSF notes, “While we don’t have definitive proof that lifestyle changes alter prostate cancer, the evidence is strong enough to recommend these changes for general health.”
Finding Support
Men on active surveillance benefit from various resources:
- Support groups: Organizations like Us TOO offer groups specifically for men on active surveillance.
- Information: The Prostate Cancer Foundation, American Cancer Society, and National Cancer Institute provide detailed information.
- Digital tools: Several smartphone apps help track PSA levels, appointments, and symptoms.
Talking with Your Doctor
Open communication with your healthcare team is essential. Consider asking:
- How often will I need follow-up tests?
- What signs might show my cancer is growing?
- How quickly would we need to act if progression is detected?
- What treatment options would be available if needed?
The Future of Active Surveillance
Active surveillance continues to evolve as research advances:
Better Patient Selection
New technologies aim to better identify which men can safely choose active surveillance:
- Advanced imaging: New MRI and PET scanning methods improve visualization of significant cancer.
- Artificial intelligence: AI helps interpret imaging and pathology data more accurately.
- Molecular markers: Tests that analyze genetic characteristics of cancer cells help predict which cancers will remain slow-growing.
Less Burdensome Monitoring
Research focuses on making active surveillance easier:
- Less invasive tests: Blood and urine tests that could replace some biopsies are under development.
- Personalized follow-up: Tailoring monitoring to individual risk profiles.
Expanding Eligibility
As confidence grows, researchers are carefully exploring active surveillance for broader groups:
- Men with selected intermediate-risk features
- Younger men (under 50) with low-risk disease
- Men with particular genetic mutations or family histories
Frequently Asked Questions
Is active surveillance the same as “watchful waiting”?
No. Both approaches monitor rather than immediately treat prostate cancer, but they differ in goals and methods. Active surveillance includes regular testing to find cancer progression early enough to still cure the disease. Watchful waiting involves less monitoring and is often chosen when life expectancy is limited or avoiding side effects is the priority.
What percentage of men on active surveillance eventually need treatment?
About 30-50% of men who choose active surveillance proceed to treatment within 10 years. This is usually due to signs of cancer progression, though some men choose treatment despite stable disease because of anxiety.
Can I ever be “done” with active surveillance?
There’s no definitive endpoint to active surveillance other than switching to treatment or, for older men, shifting to watchful waiting. However, the longer you remain on active surveillance without signs of progression, the less likely your cancer will cause problems.
Does insurance cover active surveillance?
Most health insurance plans, including Medicare, cover active surveillance costs, including PSA tests, office visits, MRIs, and biopsies. Coverage details vary, and some newer genomic tests may not be fully covered by all plans.
What if my cancer progresses while on active surveillance?
If monitoring shows signs of cancer progression, your doctor will discuss treatment options with you. Studies show that men who switch from active surveillance to treatment due to progression still have excellent outcomes, similar to those who chose immediate treatment.
Can I join clinical trials while on active surveillance?
Yes. Many clinical trials exist specifically for men on active surveillance, studying everything from dietary changes to new monitoring technologies. Participating helps advance medical knowledge and may provide access to cutting-edge approaches.
How do I handle the anxiety of living with untreated cancer?
Many men find anxiety is highest right after diagnosis and decreases over time as stable test results provide reassurance. Helpful strategies include learning about your specific risk level, joining support groups, practicing stress-reduction techniques, and maintaining open communication with your healthcare team.
Conclusion
Active surveillance represents a major advance in prostate cancer care. It offers many men the chance to avoid or delay treatment while maintaining excellent survival rates. The approach recognizes that not all prostate cancers pose an immediate threat and that quality of life matters in cancer care.
As Dr. Otis Brawley, former Chief Medical Officer of the American Cancer Society, puts it, “Active surveillance isn’t doing nothing about prostate cancer—it’s doing the right thing for the right patient at the right time.”
For men with low-risk prostate cancer, active surveillance offers a middle path between aggressive treatment and ignoring the cancer. With proper selection, careful follow-up, and open communication with healthcare providers, active surveillance effectively balances cancer control with quality of life.
As research continues to improve protocols, active surveillance will likely remain central to prostate cancer care, exemplifying precision medicine and patient-centered care.