Expert Interview: “Quality of Life During Active Surveillance”
Interview Partner: Prof. Dr. med. Axel Merseburger, Director of the Department of Urology, UKSH Campus Lübeck
1. What are the most common misconceptions about Active Surveillance?
The biggest misconception is equating “surveillance” with “doing nothing.” Active surveillance is not the absence of treatment; it is a structured program with scheduled follow-up appointments, including regular PSA testing, physical examinations, MRI scans, and repeat biopsies according to a defined timetable. Patients who adhere to this program are often monitored more closely than many men who undergo surgery.
A second misconception is that “cancer must be removed immediately.” While this is true for many types of cancer, it does not necessarily apply to low-risk prostate cancer. These tumors generally grow very slowly, and some will never cause symptoms during a patient’s lifetime. For this reason, current guidelines explicitly recommend active surveillance in appropriate cases.1,2
A third misconception is that the decision is permanent. It is not. Active surveillance is a temporary management strategy that can be revised at any time in a planned manner, without compromising the chances of cure.
2. How do patients experience the decision between active surveillance and treatment?
Experiences vary greatly, and that is the key point. Some men find surveillance to be a major relief because they maintain their continence, sexual function, and everyday quality of life. Others experience the idea of “leaving cancer in the body” as a constant burden. Anxiety often increases before each follow-up appointment, and some patients describe it as a recurring examination or test situation.
Importantly, both reactions are entirely valid. Data from the large British ProtecT study show that overall quality of life and psychological well-being do not differ substantially between men undergoing surveillance and those receiving treatment over many years. However, physical side effects are significantly more common and longer lasting after surgery or radiation therapy than previously assumed.3
For clinical practice, this means we must take the psychological aspects just as seriously as the PSA value. If a patient experiences persistent distress during surveillance, it may not be the right strategy for him, and choosing treatment can also be a medically reasonable decision.
3. Can diagnostic testing help patients feel more confident in making this decision?
Yes, significant progress has been made in recent years. The most important advance is the multiparametric MRI of the prostate combined with targeted biopsy. This approach has substantially reduced the number of missed aggressive tumors and now forms the foundation of every surveillance decision. In addition, PSA trends over time provide more meaningful information than a single PSA value.1,2
There are also molecular tests that assess the biological aggressiveness of a tumor using biopsy tissue, as well as blood- and urine-based biomarkers. These can provide additional information in borderline cases, for example when findings from physical examination, PSA testing, MRI, and pathology do not present a consistent picture.
However, it is important to be realistic. These tests are not routine tools. Current guidelines recommend them only when the results are likely to influence treatment planning, and long-term data demonstrating an impact on survival are still lacking. They do not replace physician-patient discussions, but they can help make those conversations more informed.1,2
4. Do patients on Active Surveillance still have the same treatment options later on?
In principle, yes, and this is perhaps the most important message for patients. Choosing surveillance does not close any doors. Surgery, radiation therapy, and, in selected cases, focal therapies remain available if disease progression makes treatment necessary.
The 15-year results of the ProtecT study demonstrate this clearly. Prostate cancer-specific mortality was approximately 3% in all three groups, surveillance, surgery, and radiation therapy, with no statistically significant differences. Around 97% of men were still alive after 15 years. Approximately one-quarter of men in the surveillance group had never required treatment by the end of the observation period.4
That said, honesty is important. Metastases occurred somewhat more frequently in the surveillance group, around 9% compared with approximately 5% after surgery or radiation therapy. Therefore, one requirement remains essential: surveillance must be carried out consistently and thoroughly documented. Patients who do not attend follow-up appointments are not practicing active surveillance.4
5. How can physicians support their patients in making this decision?
First, by dedicating sufficient time, more than a single consultation. We need to explain that low risk truly means low risk and openly discuss the numbers: what may happen in favorable and unfavorable scenarios, and what the implications are for continence, sexual function, and daily life.
Second, involve the patient’s partner. Decisions are rarely made alone and family concerns often have a strong influence.
Third, make the surveillance program tangible and binding. A written surveillance plan with specific dates helps reduce uncertainty. Patients should know exactly when the next PSA test, MRI scan, and biopsy are scheduled.
Fourth, proactively offer psycho-oncological support rather than waiting for patients to ask for it. The emotional burden of a cancer diagnosis is real, even when the prognosis is highly favorable. In Lübeck, we have had very positive experiences making this support visible and accessible from the very beginning.
Most importantly, the decision is reversible. Every patient should leave the consultation with that understanding.
6. What do you recommend to men who are still postponing prostate cancer screening?
Do not wait until symptoms develop, because by then it may already be too late for the most favorable outcomes. Prostate cancer in its early and highly treatable stages generally causes no symptoms. Statistically, men who seek medical attention only after pain or symptoms appear are diagnosed later.
My second point is directed at men who avoid screening because they fear the consequences. Today, that fear is often unfounded. An early detection examination initially consists of a discussion, a physical examination, and a blood test. Even if something is found, it does not automatically lead to surgery. In fact, for men with low-risk findings, active surveillance is often the recommended approach.
Specifically, men should consider discussing prostate cancer screening from age 45 onward. Those with a family history, such as a father or brother affected by prostate cancer, should begin earlier, around age 40. The EAU guidelines 2026 recommend early testing with PSA starting at the age of 50. For men with a family history of PCa and for men of African descent, the corresponding age for testing is 45 years and for men carrying BRCA2 mutations, the corresponding age is 40 years2. And a single PSA value is not a diagnosis. It is simply the starting point for an assessment that should be carried out together with an experienced urologist.
Disclosure: Prof. Merseburger serves as a consultant to Eurobio Scientific Service GmbH
References:
1. Leitlinienprogramm-Onkologie. S3-Leitlinie Prostatakarzinom, Langversion 8.1. 2025. AWMF 043-022OL.
2. EAU Guidelines. EAU Annual Congress London 2026.
3. Donovan JL, et al; ProtecT Study Group. Patient-Reported Outcomes 12 Years after Localized Prostate Cancer Treatment. NEJM Evidence. 2023;2(4):EVIDoa2300018.
4. Hamdy FC, Donovan JL, Lane JA, et al. Fifteen-year outcomes after monitoring, surgery, or radiotherapy for prostate cancer. N Engl J Med. 2023;388:1547-1558. doi:10.1056/NEJMoa2214122.
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