Why Men Struggle With Active Surveillance and How to Help Them - 066
Your doctor just told you that you have prostate cancer. Then they tell you the best plan is to monitor it. This is the reality for thousands of men diagnosed with low-risk prostate cancer who enter what's called "active surveillance (AS)."
It’s a path supported by science.
But the emotional reality is far more complicated. Living with even low-risk cancer, while deliberately choosing not to treat it, goes against every instinct we have about fighting disease.
The psychological burden is enormous, yet most healthcare systems focus almost entirely on the medical protocols while largely ignoring the mental health challenges that come with this approach.
Men are left to navigate feelings of helplessness, anxiety about the future, and the constant weight of knowing cancer is growing inside them, however slowly.
This gap between medical best practice and psychological support creates unnecessary suffering. We can do better for men facing this difficult but increasingly common treatment path.
Why active surveillance
The goal of AS is to monitor for progression while preventing or delaying therapy with inherent side effects.
Another component of AS is curative intent. If the patient progresses and needs treatment, appropriate protocols should catch the progression early enough for treatment to result in a cure.
Real-world adherence to AS monitoring is inconsistent, primarily because repeat biopsies are hard to tolerate. Clinic culture, geography, clinician philosophy, and communication layer on top of that.
Safety of active surveillance
Multiple long-term studies show that active surveillance carries a very low risk of dying from prostate cancer. At Toronto/Sunnybrook, 15-year prostate-cancer–specific survival was ~94.3% (prostate cancer-specific mortality ~5.7%). At Johns Hopkins, among carefully selected men, the combined 15-year risk of metastasis or prostate-cancer death was ~0.1%.
These numbers show why major societies like the National Comprehensive Cancer Network (NCCN) and the American Urological Association (AUA) recommend AS as the preferred option for very-low and low-risk disease.
A quick overview of active surveillance
Who's a Good Candidate?
It is usually offered to men whose prostate cancer is low-risk and unlikely to spread quickly.
Risk Group:
Very-low or low-risk prostate cancer
Some carefully chosen men with favorable intermediate-risk disease
Cancer Stage: Tumor is only inside the prostate (T1c–T2a)
Gleason Score / Grade Group:
Grade Group 1 (3+3=6) — most common for AS
Some men with Grade Group 2 (3+4=7) with a small amount of pattern 4 may also qualify
Tumor volume: few cores, low % core involvement
PSA Levels: Typically below 10 ng/mL
PSA Density (PSAD): Best if below 0.15 (sometimes acceptable up to 0.20 in select men)
Biopsy Results: Only a small amount of cancer is found in a few biopsy samples
Genomic Testing (Tissue-Based): For some men, especially those with Grade Group 2 cancer or other borderline features, doctors may use specialized tests on the original biopsy tissue. These tests (such as Decipher, Prolaris, or Oncotype DX GPS) analyze the activity of specific genes within the cancer cells to better predict the tumor's aggressiveness. A favorable genomic score can provide greater confidence in choosing AS.
Liquid Biomarkers (Blood or Urine Tests): Before an initial or repeat biopsy, certain blood or urine tests can help clarify the risk of having aggressive cancer. Tests like the 4Kscore Test, Prostate Health Index (PHI), or SelectMDx can augment risk stratification and may reduce unnecessary biopsies when used appropriately.
Life Expectancy: Generally recommended for men with a life expectancy of 10 years or more.
How Active Surveillance Works
"Surveillance" means careful monitoring
PSA Blood Test: Every 3–6 months
Digital Rectal Exam (DRE): Once a year
Prostate MRI:
Often done before or at diagnosis
May be repeated every 1–3 years or if PSA changes
Biopsies:
Confirmatory biopsy within 1–2 years after diagnosis
Later biopsies every 2–5 years, or sooner if MRI/PSA suggest change
Intervals are adjusted to risk and changes in PSA/MRI
Rising PSA is a trigger for MRI/biopsy, not necessarily treatment
When to Switch to Treatment
Most men stay on AS for years, but treatment is recommended if the cancer shows signs of becoming more aggressive.
Grade Progression: Biopsy shows a higher grade cancer (e.g., moving from Grade Group 1 to 2 or higher)
Tumor Growth: More cancer found on biopsy or MRI
PSA Changes: Rapid rise in PSA → prompts MRI or biopsy, not treatment by itself
Personal Choice: Some men decide to switch to treatment because of anxiety or preference
The reality is that adherence rates are low
Professional organizations have created AS guidelines that have some variability between them. And there are many things for both clinicians and patients to consider when implementing an AS protocol.
These variations and multiple decision points make this a rather complicated process to follow, even with adequate guidance by an experienced clinician. Studies show that in non-academic (real-world) settings, the frequency of adherence to AS professional guidelines is low.
UCLA researchers examined the records of men diagnosed with prostate cancer from 2004 to 2007 and found that only 4.5% of 3656 men on AS were monitored according to professional guidelines.
In another study, of 5192 men on AS over 5 years, 11.1% met Sunnybrook/PRIAS surveillance standards, and only 5% met Johns Hopkins surveillance standards. Repeat biopsies were the weak link.
Another real-world study monitored 546 men diagnosed with prostate cancer from 1995 to 2022. These men were enrolled in AS and had at least one biopsy after diagnosis. When followed over three decades, only 11.1% were adherent to AS guidelines.
When researchers dug into the details of this last study, they found some surprising and not-so-surprising things:
Repeat prostate biopsies were the sticking point (no pun intended) and the main reason for nonadherence.
Most men kept up with annual PSA monitoring but balked at undergoing biopsies as frequently as the guidelines suggest.
For most men, nonadherence did not result in poor outcomes. For most men who didn't follow biopsy guidelines and had stable PSA levels over a median follow-up of 9.3 years, deaths caused directly by prostate cancer were a reassuringly low 1.6%, consistent with outcomes in landmark AS trials.
Black men were significantly less likely to adhere to AS protocols compared to white men, consistent with known racial disparities in healthcare.
Men with higher tumor stages (cT2) or men with more comorbidities were more likely to follow the guidelines.
Researchers summarized these findings by saying,
"Our findings highlight a fundamental truth about AS: while guidelines provide an important framework, they don't always align with the realities of clinical practice—or with what patients are willing to tolerate. This is where we, as a community, need to bridge the gap between trial-based protocols and real-world practice. Perhaps the future lies in more personalized monitoring strategies—ones that respect both the science and the individual patient experience."
The clinician's role
Patient characteristics alone aren't the only determinants of initiating and maintaining AS. There is a high variability in AS practices across different geographic regions, healthcare systems, and even among urologists in the same practice.
According to one study, the clinic where an eligible man seeks urological care is a primary predictor of whether his prostate cancer management plan includes active surveillance.
Matt Cooperberg, M.D., of the University of California, San Francisco, discussed the findings of a study on active surveillance at the American Urological Association's (AUA) 2022 annual meeting.
He said that AS use ranges from ~7% to ~80% depending on the practice and 0–100% depending on the clinician. Who you see truly matters.
He also said that in his UCSF program, "about 95% of men diagnosed with low-risk prostate cancer are put on active surveillance."
This wide variation indicates that local practice culture, clinician philosophy, and institutional priorities are key drivers of the type of care patients receive, often outweighing standardized national guidelines.
Why clinicians adapt the guidelines
Clinicians don't view professional guidelines as rigid rules but rather as templates to base decisions upon, given the unique context of each patient.
Urologists often exercise significant discretion, tailoring the frequency and type of monitoring based on their professional judgment, their personal comfort level with uncertainty, and their assessment of a patient's individual risk profile.
These fears can create significant obstacles that push physicians toward doing more frequent testing and following strict monitoring guidelines, or even recommending that patients switch from active surveillance to active treatment.
Organizational influences on individual practice patterns
Where a clinician practices highly influences their decision-making, including whether to follow AS professional guidelines. Urologists who work in highly structured and hierarchical settings such as academic medical centers are more likely to follow AS national guidelines.
Whereas, urologists who practice in less structured settings, such as small community-based practices, may rely more on individual preferences. All of these factors lead to greater variability in the care of men who are eligible for active surveillance.
Not surprisingly, the physician's influence can also be a strong reason why patients decline AS.
Problems with acceptance and adherence to AS involve doctors, patients, and the healthcare system in which they practice.
Knowing the AS professional guidelines isn't enough to standardize care in AS.
Change requires the adoption of AS protocols at the institutional level, along with quality improvement initiatives, financial incentives, and performance feedback at the practice level.
Why some men drop out of AS despite stable disease
A fascinating study out of the United Kingdom looked at why some men who had been on AS for prostate cancer dropped out to undergo active treatment despite no signs of disease progression.
Researchers interviewed 14 men from diverse socio-cultural backgrounds in the London area who fulfilled this criterion. I found this paper particularly interesting because it included quotes from these men regarding the reasons why they chose to drop out of AS and pursue active treatment.
I took the quotes, without alterations, directly from the paper so you'd understand how these men felt.
Keep in mind that these were men in a universal healthcare system, the United Kingdom's National Health Service (NHS), which includes some private healthcare options. Regardless, I think many prostate cancer patients will find their reasons relatable.
Regarding the participants in the trial:
Had been diagnosed and managed at the same clinic and by the same clinical team.
Mean age was 64 years.
Mean time on AS was 39 months.
Mean PSA was 5 ng/mL (2 to 8 ng/mL).
29% were of Asian, African, and Afro-Caribbean ethnicity.
A common theme in the interviews was the impact of negative experiences during diagnostic procedures, highlighted as among the most challenging aspects of their entire experience.
What men say makes active surveillance hard
Long waits at diagnosis often continued during surveillance; scheduling gaps and slow communications increased their stress.
"…At diagnosis my scan took three weeks and my biopsy results took four weeks. I almost missed my appointment because the letter arrived the morning of the appointment by which point I was climbing the walls…It was just the same once I'd started on active surveillance—I couldn't deal with it…
Shared decision-making felt limited.
"…It was confusing. I read that there were new guidelines on active surveillance and the doctor told me they weren't relevant to me as I was part of an active surveillance trial. I just wanted to discuss the implications of the guidelines, was it better or worse than the care I was getting…"
Patients wanted real dialogue about evolving evidence. Human connection often provides more reassurance than handouts or links.
"…Whilst there was plenty to read on the internet, it's finding people that have been through it that I found most helpful. … Often you can read and read but, at the end of the day, talking to someone, is the most important part…"
Several men indicated that they had not been offered psychological support while on AS, though they felt it would have helped them cope or adjust to their diagnosis.
"…I just needed someone to off-load on. I couldn't get through on the phone…when I did, my nurse asked me what I was fussing over. I heard about the hospital psychological support services during my radiotherapy… Too little, too late!..."
Many men felt that their clinical team lacked enthusiasm for AS.
"…I asked the doctor for some references to the latest active surveillance research. He said there wasn't anything useful, he sounded so bored by the question. I did my own research; there was lots that interested me. I'm an engineer; I like to know how these things work. In my line of work if an engineer isn't engaged and interested in what he's doing mistakes happen, I couldn't risk it, it's my life…"
Men perceived more structured, visible support after switching to treatment than during AS.
"…I chose radiotherapy, from that moment I was introduced to my Nurse specialist and a support worker, I also met a specialist radiographer who was going to see me every week during my treatment. They sent me to a seminar…where I met more of the team and lots of other patients…that was to prepare me for treatment. I couldn't have felt more love and support. I didn't feel nervous about the treatment at all. If they had done the same for surveillance I might not have had treatment…"
Many men described the significant influence their partners had on their decision-making as the most challenging element to balance while remaining on AS.
"…My wife wanted me to have treatment, she never wavered. To be honest, she wore me down. I went for surgery because she wanted it, not because I did. If I'd been on my own I'd still be monitored…"
Researchers' conclusions
A negative experience during the initial diagnosis can adversely affect both uptake and long-term adherence to AS.
Clinical teams need to find ways to expedite the results of diagnostic testing and subsequent surveillance procedures to reduce the psychological stress associated with waiting for test results.
Specialists and GPs (primary care providers) need to coordinate ways to check on patients' mental well-being during the diagnostic phase and minimize the psychological burden associated with adhering to AS protocols.
More than two-thirds of participants indicated that the clinical team failed to respond to men's changing needs as a reason for opting out of AS. To help patients stick with their treatment plan, healthcare teams need to adjust how they make decisions together with patients as the patients' needs change over time during active surveillance.
Researchers suggest mimicking the best parts of chronic care models, such as those for treating diabetes: Easy access to a multidisciplinary team to improve the quality of life for men on AS. One that provides ongoing education for self-care, stress reduction, community support, and the timely delivery of information.
Based on the interviews, researchers recommend providing peer support for men on AS. Some clinics, both academic and non-academic, offer this.
Reasons for leaving AS for active treatment despite no disease progression
Negative experiences at diagnosis.
Delays and inflexibility at follow-up appointments.
Inaccessibility of the healthcare team.
Lack of information and support.
Not being able to connect with peers.
Being excluded from shared decision-making.
Perceptions of being considered a low-priority patient.
The psychological burden of AS
The study based in London brought to light some of the psychological stressors prostate cancer patients face.
Besides the cumbersome aspects of monitoring, deciding to remain on AS is highly influenced by a man's psychological state. Research shows that men who undergo AS have higher rates of anxiety and depression.
Another paper discusses the factors that draw patients toward or away from AS. It focused on the psychological aspects of how men decide on active treatment or active surveillance.
It found that men will make decisions influenced by their prior experiences with cancer, their willingness to accept risk, and how they perceive their disease, which is highly influenced by others.
In almost all studies that examine the issues influencing a man's decision-making in prostate cancer, a prominent driver is cancer control and eradication.
A man's concern over cancer control is a driver toward surgery and a barrier to acceptance of AS. They want "physical removal of the cancer."
Researchers noted that this desire for action and control creates an internal conflict with the passive monitoring of AS.
For many, definitive treatment is perceived as a way to resolve this conflict, eliminating uncertainty and restoring a sense of control, despite the known risks of treatment-related side effects.
Proper education in shared decision-making is key
A meaningful way to help men make balanced decisions is to properly educate them about the overall safety of active surveillance as proven by multiple robust clinical trials.
Another way is to give men accurate and honest estimates of risks associated with aggressive treatment, such as radical prostatectomy and radiation. Include a discussion of their risks for urinary, sexual, and bowel symptoms.
Then it is up to each individual to decide how much concern they have regarding those possible side effects.
Factors associated with adherence
This same paper discussed factors associated with adherence and nonadherence to AS, and some findings were surprising.
It's less "general anxiety" and more about decisional confidence and uncertainty. If confidence erodes, men are more likely to exit AS without progression.
Factors associated with nonadherence to AS:
Uncontrolled anxiety may drive them towards definitive treatment.
Men who are undecided about treatment early on experience more psychological stress than those who are confident about their choice.
Ways to buffer anxiety and support AS adherence include:
Discussing the safety of AS.
Discussing ways for men to maintain "control" during AS, such as making choices related to maintaining a healthy diet and lifestyle.
The role of support systems is essential, especially in the context of family, as healthy family involvement seems more beneficial than peer support groups.
Men's experiences with peer support groups during active surveillance varied significantly. Some found these groups genuinely helpful, while others felt they weren't valuable or even made things worse.
Several men in this study reported feeling criticized or judged by other group members who had chosen more aggressive treatments like surgery or radiation.
Cancer progression versus social and psychological triggers
Whether certain patients stick with active surveillance doesn't just depend on how their cancer progresses medically. Psychological and social aspects play a huge role, too.
Men who feel confident about their decision, have good strategies for managing their own care, and receive strong support from their families tend to do better staying on active surveillance.
On the flip side, men who struggle with ongoing doubts about their treatment choice, encounter unhelpful support groups, or can't resolve their uncertainty are more likely to switch to active treatment even when it's not medically necessary.
What actually helps men stay on AS?
Make surveillance tolerable, predictable, and personalized.
MRI-guided, risk-adapted follow-up: Use MRI to triage who truly needs a repeat biopsy now vs later, aligning testing intensity to risk. Growing evidence supports MRI-first strategies and protocols are evolving.
Fast results + clear ownership: Tell patients exactly who calls with results and when. Delays magnify anxiety.
Shared decision-making that evolves: Revisit the plan as needs change; decisional confidence is dynamic, not one-and-done.
Peer support: Offer vetted communities early. Men repeatedly report that talking to someone on AS is more reassuring than reading another PDF.
Address disparities head-on: Track adherence by race & ethnicity at the clinic level and proactively reach out when surveillance milestones are missed.
PSA levels and biopsy results alone cannot measure the success of active surveillance. It hinges on our ability to support these men who are dealing with uncertainty while trusting us to help them.
The path forward requires a comprehensive model of care. One that integrates psychological support, prioritizes the patient's experience, and treats decisional confidence as a clinical outcome. Only then can this medically sound strategy become a truly sustainable and humane one.
Questions to ask your clinician
What is our confirmatory plan? (timing, MRI vs systematic + targeted biopsy)
If my PSA goes up, what exactly happens next? (MRI + biopsy triggers)
Who calls me with results, and by when? (set a 7–day expectation)
How often will MRI replace biopsy for me if my PSA and imaging stay stable?
Can you recommend an AS peer support group? (local vs ASPI vs AnCan)
What's my personalized risk profile? (include PSA density and, if used, a genomic score)
Can you review my UCSF-CAPRA risk score with me and explain what it means?
Can you review my MSKCC risk score with me and explain what it means?
If your clinician can’t satisfy your expectations, always opt for a second, and even a third opinion if necessary, preferably at a prostate cancer center of excellence.
I hope you enjoyed this post.
Until the next one, I wish you good health.
And much love,
Keith
I really enjoyed reading your comprehensive article, Keith. My husband is on AS and we can definitely relate to many points you have addressed. I have a technical question to you as I consider you an expert based on your personal journey. My question is about PSA post biopsy. Our urologist has recommended to do a PSA at a 6 months mark post biopsy. My husband is tempted to do it at 3 months mark to have a baseline and then again 3 months after. What are your thoughts? I know there’s a lot of inflammation post biopsy and perhaps 3 months isn’t enough for healing. Thanks in advance. Healthy wishes to you. Oksana
This post hit a lot of buttons for me. I was Gleason 7 (3+4) in only 2 cores out of 12, with relatively low percentages in each. My urologist told me that there was "absolutely no rush" to make a decision on treatment, and I could take a 6-month vacation if I wanted. He gave me the "100 Questions" book to read, and I joined every Facebook group I could find, watching countless YouTube videos and reading articles from PCF and PCRI. I had a discussion with a radiation oncologist about doing radiation (combination of HDR and standard). But in my head - which was increasingly full of anxiety and dread - I thought the best answer was to just remove it all, especially if the tumor was small and completely contained in the gland (although there was some nerve involvement). I do not regret that decision for surgery (on 9/25/24) one bit.
The thing that helped me emotionally - more than anything else - was the camaraderie of the guys on the Facebook groups, especially the ones that were specifically aimed at gay/bi men and trans women. This quote from your post spoke volumes to me: "...Whilst there was plenty to read on the internet, it's finding people that have been through it that I found most helpful. … Often you can read and read but, at the end of the day, talking to someone, is the most important part…" Many of the guys in these groups have become lifelong friends because we share a unique path.
Thanks for all you do, Dr. Keith. I'm incredibly grateful that you've chosen to share your experience and expertise with all of us.