Living With Cancer on Active Surveillance: Practical and Emotional Support
This article forms part of Dr Deanne Soares’ urologic cancer education series, providing evidence-based guidance on treatment, recovery and life after urological cancer surgery.
For people on active surveillance, the hardest part of cancer care is often not the diagnosis or the treatment — it is the waiting.
Living with a known cancer that is being monitored rather than immediately treated can feel psychologically demanding, even when the medical rationale is sound. Many patients describe a sense of uncertainty that sits quietly in the background of daily life, surfacing around test results, follow-up appointments, or unexpected symptoms.
This article focuses on the practical and emotional realities of living on active surveillance, and on how patients, families, GPs and specialists can support this phase of care effectively.
Patient summary
Key points to know:
Active surveillance is safe for selected cancers, but emotionally demanding
Anxiety between tests is common and expected
Practical routines help reduce mental load
Support from GPs, family and specialists matters
Surveillance is a phase, not a permanent label
Why surveillance feels harder than people expect
From the outside, active surveillance can look like the “easy option”. There is no operation to recover from, no radiation schedule, and no immediate side effects.
From the inside, it can feel very different.
Patients often describe:
persistent background anxiety
heightened awareness of bodily sensations
fear around test results
difficulty explaining their situation to others
The paradox is that while the cancer is low risk, the mental load can feel high.
Understanding that this response is normal is an important first step.
The rhythm of surveillance: learning the cycle
Most people on surveillance notice that their anxiety follows a predictable pattern.
Common phases include:
relative calm after a reassuring result
rising tension as the next test approaches
heightened anxiety while waiting for results
emotional release — positive or negative — once results are known
Recognising this cycle allows patients to prepare for it, rather than being caught off guard each time.
Practical strategies that help
Creating structure
Surveillance works best when it is predictable.
Helpful strategies include:
knowing the schedule of tests in advance
understanding what changes would prompt action
keeping a simple record of results over time
scheduling follow-up appointments early
Structure reduces the sense of loss of control.
Managing information intake
Many patients oscillate between excessive research and complete avoidance.
Both extremes can increase anxiety.
A more sustainable approach is to:
identify trusted information sources
avoid repeated searching between tests
discuss concerns at scheduled reviews rather than in isolation
Not every question needs an immediate answer.
Normalising bodily awareness
People on surveillance often become hyper-aware of normal bodily sensations.
Minor aches, urinary changes or fatigue may be interpreted as signs of progression.
Learning to distinguish between:
expected day-to-day variation, and
symptoms that genuinely warrant review
can significantly reduce distress. GPs play a key role in this reassurance.
Emotional support: what actually helps
Talking about uncertainty
One of the most difficult aspects of surveillance is explaining it to others.
Patients may hear comments such as:
“Why aren’t they doing anything?”
“I’d want it out straight away.”
These responses, while well-intentioned, can increase doubt.
Open discussion with clinicians about why surveillance is appropriate helps patients feel anchored in the decision, even when external opinions vary.
Partners and families
Partners and families often carry their own anxiety.
They may:
worry silently
feel unsure when to raise concerns
struggle with the idea of waiting
Involving partners in discussions where possible can align understanding and reduce tension at home.
When anxiety becomes overwhelming
For some patients, surveillance anxiety becomes intrusive.
Signs that additional support may help include:
persistent sleep disturbance
avoidance of follow-up
inability to enjoy daily activities
escalating health anxiety between tests
Seeking support does not mean surveillance is failing. It means the psychological load needs addressing alongside the medical plan.
The role of the GP during surveillance
GPs are often the most consistent point of contact during active surveillance.
Their role includes:
reinforcing that surveillance is active care
contextualising minor symptoms
managing general health and comorbidities
supporting mental wellbeing
identifying when re-referral is appropriate
For many patients, reassurance from a trusted GP is as important as specialist input.
When it’s okay to reconsider the plan
Active surveillance is not a contract.
Some patients choose treatment even without objective progression because:
anxiety remains high despite support
priorities change
life circumstances shift
Revisiting the decision does not mean surveillance was wrong. It means the balance between cancer risk and quality of life has changed.
That reassessment is part of good care.
Surgical judgement and continuity of care
Surveillance is most effective when overseen by clinicians experienced in both operative and non-operative cancer management, who are comfortable adjusting recommendations over time rather than adhering rigidly to a single pathway.
Continuity matters.
Patients feel safer when they know their care is guided by familiarity with their history, not just their latest test result.
A note on individual experience
This information is intended to support people living with cancer on active surveillance, but experiences vary. Emotional responses are shaped by personality, support networks, previous health experiences and life context.
Support should be tailored accordingly.
Conclusion
Living with cancer on active surveillance requires more than medical monitoring. It requires emotional resilience, practical strategies and consistent support.
For many patients, surveillance allows years of preserved quality of life without compromising future treatment options. The challenge is not the safety of the approach, but the weight of uncertainty that comes with it.
Good cancer care recognises that managing uncertainty is as important as managing disease.
About the author:
Dr Deanne Soares is a Melbourne-based urologist with a subspecialist focus in robotic prostate, kidney and bladder cancer surgery.
