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What to know about prostate cancer: Interview with Prostate Cancer UK

Policy and Health Influencing Manager at Prostate Cancer UK, Joseph Woollcott, spoke to PPP's Rachel Millar about the current picture of prostate cancer diagnostics and care in the UK, and the work of Prostate Cancer UK to improve care and save lives.

Prostate Cancer is a cancer in the prostate gland. Men, transgender women and non-binary people who were assigned male at birth as well as some intersex people can have a prostate gland. It is usually the size and shape of a walnut and grows bigger as you get older. It is situated underneath the bladder and is responsible for helping to make semen – the fluid that carries sperm.

Prostate cancer can develop when cells in the prostate start to grow in an uncontrolled way. One in eight men will get prostate cancer at some point in their lives. For Black men that risk increases to one in four, and men with a family history of prostate cancer are two to four times more likely to be diagnosed. Family history and ethnicity also overlap and may increase prostate cancer risk. It is one of the most common cancers in the UK and a recent study in The Lancet has predicted that globally, by 2040, there will be 2.9 million cases diagnosed annually. This year, there has been a surge in awareness in response to King Charles’ cancer diagnosis.

As part of the 2024 Cancer Care Programme, Public Policy Projects (PPP) is hosting a round table examining variations in prostate cancer care around the UK. As part of our research, we spoke to Joseph Woollcott from Prostate Cancer UK about some of the challenges around prostate cancer, as well as what Prostate Cancer UK wants to see happen in prostate care in the NHS.

Joseph Wollcott, Policy and Health Influencing Manager, Prostate Cancer UK

Can you give us some statistics on prostate cancer in the UK to give us some context?

Prostate cancer is the most common cancer in men in the UK; every year, 52,000 men are diagnosed – that’s 144 a day. There are just under 500,000 men living with prostate cancer right now and 12,000 men a year die from the disease. If diagnosed early, in stage one or two, it is eminently treatable and survivable, but that treatability reduces dramatically the later you diagnose it.

Can you tell us a bit about some of the challenges particular to prostate cancer?

One of the challenges is that prostate cancer is asymptomatic in its early stages, and in diagnosing prostate cancer, it requires a biopsy, which risks harm. This used to be done transrectally and had higher risks of infection, however, this has now changed with MRI scans being a key stage on the diagnostic pathway and trans-perineal biopsy. We believe the guidelines on diagnosis are still outdated and the reduced diagnostic risk needs to be reflected.

Some prostate cancer grows too slowly to cause any problems or affect how long a person lives. Because of this, many men with prostate cancer will never need any treatment. But other prostate cancer grows quickly and is more likely to spread. This is more likely to cause problems and needs treatment to stop it spreading. As diagnosis has a risk and treatments tend to have life-limiting side effects, diagnosing a man who is in his 80s may not be a good use of his time, energy and resources. This variability makes it difficult to set policies that encapsulate the range of experiences and risks.

Who is most at risk?

While risk increases with age, there are other indisputable risk factors; Black men, those with family history of prostate cancer and people with certain genetic variants. These people are at risk of getting a more aggressive prostate cancer at a younger age. If you are from an area of deprivation, you are more likely to have worse outcomes from prostate cancer and looking at the demographics of deprivation in this country, there are high numbers of Black people in deprived areas, so these risk factors are effectively stacking up.

This means we have to prioritise who we talk to about their prostate cancer risk and what we think the best guidance is in terms of healthcare and promoting overall population health. Furthermore, there is variation across the country which broadly follows the trend that the closer you live to London, the more likely you are to be diagnosed early. That isn’t uniformly true but is broadly shown in the data.

The reason for this disparity is likely to be multifactorial; we have a wildly unbalanced UK economy that favours the South East, as well as differences in clinician expertise and experience level across the country. Whatever the reason, we know, there are men in North West England and Scotland that statistically will be diagnosed a lot later than someone in London. So unfortunately, regional variation can make a big difference.

What is the diagnostic pathway and how is treatment decided?

There is no national screening programme for prostate cancer in the UK. Instead, there is an ‘informed choice programme’ called the Prostate Cancer Risk Management Programme. Under the policies of this programme, any man over 50 can ask their GP for a PSA blood test. The PSA test is a check of a man’s prostate specific antigen (PSA). If a man has raised levels of this antigen, they are referred for further tests as this suggests that they could have prostate cancer.

However, it’s a controversial test as it can be unreliable and can give false positives and false negatives; a person might have a high PSA because they have been cycling, have recently had sex, or might have prostate cancer. There are also rarer cases where somebody might have low PSA and yet, have prostate cancer. For diagnosis, a man typically has an MRI if the PSA is raised and, depending on the MRI results, a biopsy is done. Localised prostate cancer (non-metastatic) is divided into five risk groups according to the Cambridge Prognostic Group (CPG1-5). The risk group is determined by a synthesis of several factors:

  • Grade Group or Gleason score (this is determined by a pathologist looking at the tumour cells from the biopsy)
  • Prostate-specific antigen (PSA) level
  • Tumour stage (this is determined by the size of the tumour)

Each of these factors is given a score and the combination determines the CPG. More details on the scores required for each are here.

The CPG score helps inform the treatment choice with a diagnosis of CPG1 probably requiring active surveillance, whereas CGP3, CGP4 or CGP5 will probably require treatment, some of which are life changing.

What are the treatments available?

One thing that is positive in prostate cancer is that there are a large number of treatments available and there is good, robust data alongside these treatments. The broad categories of treatments are:

  • Active surveillance
  • Radical prostatectomy (removal of the prostate gland, this may impact an individual’s sex life, fertility and may cause incontinence)
  • Radical radiotherapy (similar side effects to RP)
  • Hormone therapy (often suppressing male sex hormones, these have side effects such as hot flushes, insomnia, and other nasty side effects)
  • Novel hormonal agents (these are newer treatments and act to suppress reception of hormones so the body is unaware of the hormonal presence and this slows the growth of the tumour)
  • Precision medicines (these are treatments that are aligned to a tumour’s genome to be most effective)

There are some severe side effects to treatments and therefore it is important to get the treatment right and not over or under treat people. ‘Treatment regret’ can be a part of prostate cancer. If a man has a low-grade cancer, of CPG1 or CPG2, then we, at Prostate Cancer UK, believe that active surveillance may be the best course of action. This goes against instincts; you’ve got cancer, you want it cut out. However, a person in their 60s, for instance, could be monitored regularly and if living with a tumour that is not growing quickly, can be in good health. If that person underwent a radical prostatectomy, they may live for the same amount of time but be left with the side effects of a prostatectomy, unable to get an erection or having to wear incontinence pants. So, living with the side effects of treatment comes with this evaluation of the risks when deciding the best course of action for patients according to their needs, prognosis and resources available.

My dad has prostate cancer and so I am at higher risk which means I soon will need to decide whether I want to ask for a PSA test and how I respond to my results. It comes down to how we make decisions for our own health, which is an interesting case study in healthcare, I think, as it teases out those questions.

What is Prostate Cancer UK campaigning for?

We have a strategy which states we exist to address the needs of men with prostate cancer to save and improve their lives and at its heart are four pillars. These are to;

  • Reach and activate more men to make an informed choice about their risk of prostate cancer.
  • Reduce health inequalities and become relevant to the communities most impacted, starting with Black men.
  • Accelerate earlier diagnosis and the delivery of better, more precise treatments.
  • Transform the experience and support for men with prostate cancer to live and die well.

We are striving for these in various ways. In terms of our policy priorities, as I mentioned, we want the Prostate Cancer Risk Management Programme to be updated to be more in line with the reduced risk associated with diagnosis and we are calling for proactive engagement for those at increased risk. We are about to publish a clinical consensus on PSA which has been developed over the last couple of years with clinicians and compiles the evidence for the diagnosis of prostate cancer. We are publishing this in conjunction with an analysis of where the harms are in the prostate cancer pathway. On the back of this evidence base, we believe, the prostate cancer risk management programme should be updated so that GPs can be proactive in engaging men at high risk. This is not currently in the guidelines and we think it should be.

Black men, those with a family history, men with a BRCA gene variant and men from areas of high deprivation should be made aware of the risks and given the option of making an informed choice about the PSA blood test. This is in line with our first two strategic pillars. There are concerns about overdiagnosis and causing harm by diagnosing cancers that won’t do the individuals any harm, but we have done a lot of work on this and believe the balance of evidence has tipped for men who are at highest risk. Changing guidelines is hard as there are a lot of moving parts, but we are hopeful.

We are also starting a multicenter, multiyear, multimillion pound clinical trial this year called TRANSFORM. This trial will provide definitive evidence about the best way to screen for prostate cancer.

Finally, we want a rebalancing of attention to ensure that while early diagnosis is a priority, those living with and dying of prostate cancer, are not forgotten. One thing that isn’t talked about enough is the end of the pathway. If prostate cancer has metastasized it’s probably spread to your bones. This can be incredibly painful, and we need to ensure that men with late-stage care are able to live and die well. For instance, we know that some cohorts of men are given hormonal agents with chemotherapy but that the benefits of the chemotherapy may not be worth the side effects. Similarly, we can see that the rates of novel hormonal agent prescriptions are still lower than we would expect for the number of men with the disease – how can we improve rates to give the best treatments available to everyone who is eligible? It’s working with healthcare professionals and getting guidelines translated into practice that we are looking at. As part of this final pillar, we also provide support sessions and peer support groups.

Finally, we also welcome new and emerging treatments and innovations. We saw the first precision medicine come online in 2022 and there are now more in development, we look forward to more targeted approach to treatments so that men have the most effective treatments while avoiding unnecessary treatments and their side effects. Radioligand therapy which is another exciting therapy. It didn’t get recommended in its recent NICE appraisal, but I think the direction of travel is such that it will come online in the next few years and it’s a novel way to deliver an effective treatment whilst minimising the side effects.

Do you think the government and NHS are doing enough to fight prostate cancer?

The government announced funding for the TRANSFORM trial and has provided money for risk awareness activity.

It is difficult to talk about the government and NHS as a single block. There are clinicians that work tirelessly for their patients, while the government has announced funding for the TRANSFORM trial and has put money behind raising risk awareness. And yet, as we speak, doctors’ strikes are about to happen again, and the biggest problems we hear are people that are not able to talk to their nurse when they want to or there’s a delay because the MRI machine is broken. So, is the government doing enough? Yes and no. We would like more doctors, more nurses, more MRI machines, better MRI machines, better hospital estates and I think this is true for anyone working in health campaigning.

Any final words?

Watch this space in terms of early diagnosis – it’s going to be the thing we are talking about all through the summer and up to the general election. Black men, men with a family history and men from deprived communities need a better way of being diagnosed and we think the evidence is there to support it. Post COVID, the NHS funded 5 pilots for early diagnosis of prostate cancer, such as ‘This Van Can’ in Manchester. We want to know the evidence from those pilots and take the best from them and scale them across the NHS so that men at highest risk can be diagnosed while their prostate cancer is still treatable and curable.

If you are interested in attending the virtual roundtable, Reducing variation in prostate cancer care, please contact:

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