New guidance on active surveillance for men with low-risk cancer

NICE states that men opting for less radical treatment need information and support

NICE states that men opting for less radical treatment need information and support

Active Surveillance
Picture: Alamy

New guidance on the care of men with prostate cancer has backed the use of active surveillance for those with low-risk and localised disease.

Active surveillance, sometimes called active monitoring, is a way of monitoring a patient’s cancer rather than treating it immediately. This can avoid or delay radiotherapy or surgery and their unpleasant side effects.

The National Institute for Health and Care Excellence (NICE) says that men should be offered a choice between active surveillance, a radical prostatectomy or radical radiotherapy.

Active surveillance has been mentioned in guidance before, but this puts it on an equal footing with more radical forms of treatment.

NICE says the approach keeps patients within a ‘window of curability’ while emphasising that, if tumours show signs of progressing or when people prefer intervention, treatment should be pursued.

According to the NICE guidance on the most common type of cancer affecting men, research evidence shows that active surveillance makes little difference to survival, with 98 out of 100 patients offered this route alive after ten years, compared with 99 for those offered radical treatment.

Radiotherapy and prostatectomy result in lower rates of disease progression and distant metastases compared with active surveillance, but higher rates of urinary continence and erectile dysfunction, especially prostatectomy.

There is also some evidence that, in the short term, bowel function is better in people offered active surveillance or prostatectomy than in those offered radiotherapy.

Emotional support

Prostate Cancer UK welcomes the updated guidelines and the support for active surveillance, but says it must be accompanied by adequate psychological and emotional support if men are to reap the full benefits.

Dany Bell

Studies, including one conducted by Cancer Research UK, suggest that men undergoing active surveillance have higher levels of anxiety and depression.

Active surveillance is being used for a number of cancers, including some forms of lymphoma, kidney cancer, brain tumours and low-risk thyroid cancer, as well as some precancerous conditions.

The terms ‘watch and wait’ and ‘watchful waiting’ are also are used for active surveillance, but they have a slightly different meaning.

Macmillan Cancer Support specialist adviser for treatment Dany Bell, who is also a nurse, says watch and wait involves carefully watching people with slow-progressing cancers when risks of treatment would outweigh the benefits. This can include people with incurable cancer. Watch and wait can also involve tests.

NICE says that watchful waiting for prostrate cancer involves avoiding the use of surgery or radiation, and implies that curative treatment will not be attempted.

Avoiding side effects

The use of active surveillance began to increase in prostrate cancer after it was initially backed by NICE guidance in 2008. 

The latest publication from the National Prostate Cancer audit suggests that the rate of potential overtreatment reduced from 12% in 2014-15 to 8% in 2015-16.

Ms Bell says: ‘We know some cancers grow slowly or may be unlikely to progress at all, meaning they may never need any treatment.

‘Cancer can affect every part of your life, not just your health, but active surveillance can help to prevent some of the disruption a diagnosis brings.

‘This enables patients and their loved ones to continue to live their lives as fully as possible, without potentially unnecessary visits to hospital, treatment and unwanted side effects.  

‘We are increasingly seeing active surveillance used for this reason, but it is important that people with cancer have all the information they need to make an informed decision about their treatment when it is available.’

Cancer nurses have an important role in providing this specialist support and explaining its potential benefits, experts say.

Treatment options

Prostate Cancer UK specialist nurse Sophie Smith says the initial discussions patients have with clinicians hugely affect how they view active surveillance.

Sophie Smith

‘It is how active surveillance is put across to patients that determines how comfortable they feel about it,’ Ms Smith says.

‘Men should be given options when they are diagnosed with low risk, localised prostate cancer, and active surveillance should be given as one of those treatment options.

‘Then conversations are needed about what is important to them – talking about side effects from treatment and the impact they can have.

‘It is important to make time for these conversations, talk about the evidence and present active surveillance in a positive way.

‘Low-risk localised prostate cancer is unlikely to cause men harm in their lifetimes and if there are changes, treatment can still be offered at a curative stage.’

Monitoring progress

Ms Smith says patients need clear plans for active surveillance so that they know what will happen next.

‘It is helpful to know when they will be having an MRI or biopsy, how often their appointments will be and the PSA threshold that would trigger treatment. This allows patients to see that their cancer is being monitored and that, if the cancer is changing or progressing, this will be picked up.’

The importance of a clear plan is emphasised in new, consensus-based protocols developed by Prostate Cancer UK and experts on the delivery of active surveillance.

This guidance states that men undergoing active surveillance should have access to clinical nurse specialists. They should also be offered support, information and counselling throughout their active surveillance.

For those undergoing active surveillance for lymphoma, a cancer that affects the lymphatic system, there are a number of benefits.

There is no risk of side or late effects from treatment, the lymphoma cells will not become resistant to treatment, and there are fewer hospital visits.

Most people enjoy a good quality of life and respond just as well to treatment when it is needed, according to charity Lymphoma Action.

Regular contact

Cardiff and Vale University Health Board lymphoma nurse specialist Charlotte Bloodworth says that people considering or undergoing active surveillance can become anxious because there is a natural tendency to want to move straight to treatment following a cancer diagnosis.

Charlotte Bloodworth

Ms Bloodworth says: ‘Facts and figures are important, but patients want to hear about the experiences of active surveillance that we have seen in practice.

‘They want to hear that we know the horrible things that chemotherapy can do and that we don’t want to do it unless we have to. It can take time to understand that they don’t need treatment straight away.’

A small minority of people who could have active surveillance will find it too stressful not being treated, Ms Bloodworth adds.

‘Some people are anxious and aware of their symptoms, and in some rare cases it can be better to go ahead with treatment.’

People on active surveillance need regular contact with their clinical nurse specialists and other members of the health team for advice and reassurance, she says.

‘We need to build a trusting relationship with patients and see them often or they worry.

‘We try and see patients every three to six months, and are always available for them and their families in-between.’

Case study: three years of active surveillance

Allan Higgin, 78, was diagnosed with prostrate cancer in 2009 and went on active surveillance for three years.

The retired management consultant, who lives in Dorset, says: ‘I was monitored closely, with consultations every three months for the first year, so if something did start to happen, it would be picked up quickly and action could be taken. In the event, that’s what happened.

‘At first I wasn’t offered all the information I needed about my cancer or made aware of all the treatment options. Having active surveillance is an individual decision and it’s a shame others don’t get the same reassurance that I ultimately had.’

Mr Higgin, who had a prostatectomy after his cancer progressed, says: ‘The work Prostate Cancer UK has been leading in this area highlights how important it is that all men choosing active surveillance get adequate information and support, including access to a clinical nurse specialist, from the start.’

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