Our work on active surveillance

Active surveillance has been shown to have the same 10 year survival benefits as surgery or radiotherapy for men with low risk localised prostate cancer, whilst offering the opportunity to delay or avoid these treatments and their potential side effects.

We want all eligible men across the UK to be offered active surveillance to the highest standards, including psychological and emotional support so they can confidently choose this approach and benefit from it for as long as possible.

To achieve this, with the help of our supporters, we have pushed for the latest evidence to be reflected in the NICE (National Institute for Health and Care Excellence) Guideline for prostate cancer diagnosis and management. We have also worked with health professionals, researchers, and people affected by prostate cancer to develop a suite of materials to be used by health professionals, alongside the NICE guidelines to make sure active surveillance is delivered to best practice.

What is active surveillance?

Active surveillance, or active monitoring, is a way of monitoring prostate cancer that hasn’t spread outside the prostate (localised prostate cancer), rather than treating it straight away.

Men who decide to go on active surveillance will have regular tests to check on the cancer. They won’t have any treatment unless these tests show that the cancer may be growing, or the man decides he wants treatment.

Find out more about active surveillance.

A bit of background

In September 2016 the ProtecT Trial found that men with low risk localised prostate cancer had the same survival outcomes whether they had active surveillance or radical treatment. Since the trial started, we have seen huge improvements in the way prostate cancer is diagnosed. Which means we can now identify, with even greater accuracy, men who need immediate treatment and men who are suitable for active surveillance.

These developments highlighted that thousands of men could potentially benefit from going on active surveillance. We wanted to make sure that all these men were given the right information and support to make an informed decision about choosing active surveillance.

Getting the full picture

To understand current practice in active surveillance across the UK, and the information and support needs of men, we carried out a number of pieces of research. These included a systematic literature search of national and international guidelines; a Freedom of Information Act request to UK urology departments regarding their current practice of active surveillance; and surveys and interviews with men with localised prostate cancer to understand their experiences of active surveillance.

Our main findings were:

Although the use of active surveillance is increasing, uptake, local guidelines, patient information and support varies across the UK
Despite the potential benefits, choosing active surveillance over treatment isn’t always an easy decision as it goes against the instinct of wanting to treat and ‘get rid of the cancer’ immediately
Language used during the initial consultation can determine whether men feel comfortable choosing active surveillance.
Regular, open communication with a trusted health professional, and a personalised treatment plan, are crucial to ensuring men feel reassured on active surveillance, and can help them avoid treatment unless it’s needed.

Taking action

We shared our work and evidence with the NICE committee, whose updated recommendations now give active surveillance equal status alongside surgery and radiotherapy for men with low risk, localised prostate cancer. The NICE guidelines now state that active surveillance should be offered as a primary option for these men.

We also worked with experts to develop a suite of materials to be used alongside the NICE guidelines to make sure active surveillance is delivered to best practice. These include:

a clinical consensus with protocols for the delivery of active surveillance, now published in the BJU International.
an eLearning module for health professionals
updated patient information on active surveillance
a virtual peer support group for men on active surveillance.

Our recommendations for emotional and psychological support say that men who are suitable for active surveillance should:

be given specialist information and support to help them decide whether to go on active surveillance or have treatment
have access to a clinical nurse specialist
be offered and have access to support and counselling during their time on active surveillance
receive an active surveillance plan that is tailored to them.

What does this mean for the future?

We will continue to encourage clinicians to use our resources alongside NICE’s updated guidance to make sure active surveillance is delivered to the highest standard in every part of the UK.

We also encourage men with localised disease to speak to our Specialist Nurses if the need more information about active surveillance or have any concerns, and to join our active surveillance online group to share their experiences with other men.