Active surveillance for prostate cancer: who it suits and how it works

The NHS says prostate cancer does not always need treatment, and that if the cancer has not spread the care team may suggest monitoring it to see whether it is growing. If a small cancer is not causing symptoms it may be monitored at first because prostate cancer often grows slowly and may never cause problems, and because treatments can cause side effects that may be serious and long-lasting. If the cancer grows or begins to cause symptoms, the team will discuss treatment options.

The NHS describes two kinds of monitoring. Watchful waiting means regular check-ups and blood tests at the GP surgery. Active surveillance means regular tests and scans in hospital. NICE guidance is about active surveillance, which is intended to keep the option of cure open while avoiding treatment that may not be needed.

NICE guideline NG131 uses the Cambridge Prognostic Group (CPG) system to place newly diagnosed localised or locally advanced cancer in one of five risk tiers, based on Gleason score or grade group, PSA level and stage. CPG 1 is Gleason score 6 (grade group 1) with PSA below 10 microgram/litre and stage T1 to T2.

NICE sets out a protocol that may be used for people who have chosen active surveillance. If there is concern about clinical or PSA changes at any time, reassessment with multiparametric MRI or a repeat biopsy is advised. NICE also says to offer multiparametric MRI to people on active surveillance who have not previously had one, and, if the MRI results do not agree with biopsy findings, to offer a new MRI-influenced biopsy.

NICE says that if a person wishes to move from active surveillance to radical treatment at any stage, a shared decision should be made based on their preferences, other health conditions and life expectancy. It says radical treatment should be offered to people with localised prostate cancer who had chosen surveillance and now have evidence of disease progression. Treatment options described by the NHS include surgery to remove the prostate (radical prostatectomy), radiotherapy and hormone therapy, with chemotherapy when the cancer has spread.

The NHS describes possible effects of surgery as passing urine without meaning to, erection problems, orgasm problems and loss of the ability to father children by sex. NICE advises that before radical treatment people and their partners are told that treatment will alter sexual experience and may cause loss of sexual function, and that potential loss of ejaculation and fertility should be explained, with sperm storage offered.

The NHS says that you will have regular check-ups and may have tests and scans, and that you can speak to your specialist team about any concerns without waiting for your next check-up. Choosing monitoring means accepting some uncertainty in exchange for avoiding possibly unnecessary side effects. It is reasonable to ask your team which findings would lead to a change of plan, such as a rising PSA or a change on MRI or biopsy.

The NHS says a clinical nurse specialist or palliative care team can help you and your loved ones get any other support you need, and that you do not need to wait for your next check-up if you have concerns.

NICE describes recommendations, not guarantees. Individual decisions depend on biopsy results, MRI findings, PSA trends, age and other health conditions, which a specialist team considers together. The sources used here do not quote figures on how many men on surveillance eventually need treatment, so none are given. If you are offered a choice between treatments, it is reasonable to ask for the evidence for each option, to see a nurse specialist, and to ask whether a second opinion would be possible.

On the NHS, active surveillance is run by a urology or oncology team with PSA tests sometimes done at the GP surgery under shared-care arrangements. Private urologists can offer MRI, biopsy and follow-up. Whichever route you use, ask for the written schedule of tests, who will review the results, who you contact between appointments, and how your records will be shared if you move between private and NHS care.