Prostate cancer

InsightsIssue 14 | Summer/Autumn 2019

A game Prostate changer cancer for men and me How the stars and grassroots of football tackled BILL prostate cancer TURNBULL

The problem of recurrence How new research is hoping to stop cancer coming back 2 12 14 13 CONTENTS p14 8 6 4 him copewithchemo and howfootballhelped sharing hisdiagnosis response topublicly talks abouttheincredible presenter andjournalist The formerBBCBreakfast me: BillTurnbull Prostate cancerand All thelatestfrom us update Prostate CancerUK for sexualhealth activity andsupport men improve physical New resources tohelp several years” been missingfor “It’s thethingthat’s stop ithappening researchers are tryingto to comebackandhow it isforprostate cancer We lookintohowcommon problem ofrecurrence it wasn’t over”:The “I hadafeelingthat the country raise awareness across game havehelpedto Partnerships inthebeautiful game changerformen How footballhasbeena developments The latestresearch Prostate cancernews Insights |Summer/Autumn 2019

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INBOX Dear Insights Tell us what you think about the magazine and our stories online at I telephoned my surgery prostatecanceruk.org/news. We want to hear what you’ve got to say. and requested a PSA check with my GP. He flatly refused me the test even though my father had died from prostate Dear Insights Even though the PSA cancer. He went on to Thank you for your excellent and state that the tests were helpful article on active surveillance in test is not that reliable, not reliable and that I did Insights issue 13. I have been on active it is the only thing we not need one, there was surveillance since being diagnosed with no further discussion. prostate cancer aged 74. After seven have at this time. Why do I thought that the NHS years, my PSA level has risen and a men not have screening was there to help us consultant has recommended starting not to put us down and hormone therapy immediately. after a certain age like embarrass people, I now My wife and I are full-time carers and I feel that I am unable to am concerned that the side effects could women do for breast speak with my GP for possibly affect my ability to continue and cervical cancer? fear of further rebuff. doing so. I requested a three-month stay, Brian Grimshaw Liam Bunce so that I could evaluate what options are open for me, but the lack of information Dear Mr Grimshaw, If you’re over 50 and on what other treatments would be talked it through with available to me is a concern. Thanks At the moment there is no test that can your GP then you have for all you are doing and for all the be used as a screening tool for prostate the right to a PSA test. If encouragements that appear in Insights. cancer. The PSA test as you say is you’ve been refused and Keith the best we have, but it is not reliable you’re not sure whether to enough because it can give false positive make a complaint, get in Dear Keith, and false negative results, which would touch with our Specialist do more harm than good. Although Nurses. They can help We are pleased you found our article there’s no screening programme you understand your risk on active surveillance helpful. We are available, men over 50 have the right to of prostate cancer so you sorry to hear your PSA is rising after have a PSA test if they’ve talked through can decide what to do. seven years and understand your the advantages and disadvantages with concerns about starting treatment. their GP or practice nurse. Men at a higher risk of prostate cancer (men with It’s difficult to predict what side effects a family history or black men) can ask someone may experience and to what for the test before the age of 50. degree. You may find it helpful to talk to one of our Specialist Nurses about what GET IN TOUCH! your options might be (see page 22 for contact details). They offer confidential You can contact us via support and information, and can help social media or email on make sense of things at a difficult and the addresses below, stressful time. or write to us at: Insights magazine You may also find it useful to chat to Prostate Cancer UK other men who have been through a Fourth Floor, similar experience either through our The Counting House Online Community forum (see page 23) 53 Tooley Street or our One-to-one support service. London SE1 2QN

Like us on Facebook: Follow us on Twitter: Email the Insights team: Prostate Cancer UK @ProstateUK [email protected]

Insights | Summer/Autumn 2019 3 PROSTATE CANCER NEWS Study reveals lack of support for sexual side effects of prostate cancer treatment Over 80 per cent of with prostate cancer were offered access to “As a result, too many men struggle with poor were asked questions specialist services. The men are being abandoned sexual function following relating to quality of life study also found that men without any support for a diagnosis of prostate and wellbeing. under 55 were more likely sexual problems – with cancer 1.5–3.5 years to be offered support than older men in particular earlier, yet fewer than This study provides the older men, but even in this missing out. This simply half of these men are most conclusive evidence age group 22 per cent isn’t good enough. With offered any support to to date of the scale of were not offered any. long term implications cope with it, according problems with sexual including depression and to new research. function and the lack of “For some men, it can be relationship breakdowns, services to help men deal months before any erection this is a side effect that The study, called Life with it. In fact, 81 per cent problems are experienced must not be swept under After Prostate Cancer of men responding to following their treatment, the carpet, no matter Diagnosis, was funded by the survey reported their especially if they’ve how old the man is, the Movember Foundation overall sexual function as received radiotherapy. or what treatment he in partnership with poor or very poor. By this stage follow-up has received.” Prostate Cancer UK. In appointments may have the largest survey of its No support at all was reduced,” says Heather See page 12 for more kind, over 35,000 men offered to most men, Blake, our Director of about our work to help who had been diagnosed and only 15 per cent Support and Influencing. men get the right support. New guidelines prompt doctors to offer active surveillance for low risk cancers The National Institute for “From our discussions with be used alongside the Health and Care Excellence men we have discovered NICE guidelines to make (NICE) has updated their that the language used sure active surveillance is guidelines for prostate and information provided delivered to best effect. cancer in England and by clinicians about Wales, including recognition their individual cancer QUICK REFERENCE GUIDE that active surveillance risk has a huge impact Best practice in active surveillance for prostate cancer: offers men with low risk on their treatment A consensus guideline for health professionals localised prostate cancer decision. Regular, open Contents: Introduction 1 3) Decision-making 2 Our guidelines for health professionals 2 4) Follow-up and support 2 1) Who should be offered 5) When to stop active surveillance 3 the same survival benefit as communication with a active surveillance? 2 Expert Reference Group 4 2) Who shouldn’t be offered References used in the review 5 radiotherapy and surgery. trusted health professional active surveillance? 2 Introduction They include guidance for health professionals on: • who should be offered active surveillance We have developed guidelines on best practice in • who shouldn’t be offered active surveillance active surveillance in prostate cancer. These are • decision-making and a personalised based on: • follow-up and support • a review of all the available research • when to stop active surveillance. • an audit of current practice in the UK and other “This could potentially countries Our guidelines have been developed for health • research into how men with prostate cancer professionals in centres using pre-biopsy multi- treatment plan are also parametric magnetic resonance imaging (mpMRI) feel about active surveillance. scans to help diagnose prostate cancer. They have been agreed by our Expert Reference Group and published in the British Journal of provide thousands of men Urology International. The full paper is: Merriel et al. If you have prostate cancer crucial to ensuring men ‘Best practice in active surveillance for men These guidelines outline what we believe with prostate cancer: a Prostate Cancer UK is best practice in active surveillance, consensus statement’. BJU International. 2019. however, your hospital may do things with the opportunity to delay slightly differently. If you have prostate feel reassured and can cancer and are thinking of going on active surveillance you can read more about what it involves, the advantages and disadvantages and what to expect on our website at or avoid radical treatment prostatecanceruk.org/active-surveillance maintain a good quality For general information about prostate cancer, visit prostatecanceruk.org/information and its associated side of life during their time effects,” says Heather on active surveillance.” Blake, our Director of These best practice Support and Influencing, To help health professionals approaches are published who also warned of the give men the support they in the BJU International need for tailored support need, we have worked journal and have been for men considering with experts to develop summarised in videos and active surveillance. a suite of materials to an e-learning module.

4 Insights | Summer/Autumn 2019 Enzalutamide has similar benefit to chemo when taken with hormone therapy A new clinical trial shows The new results show It revealed that men taking expect that to remain that taking the drug that enzalutamide, which enzalutamide were more standard UK practice.” enzalutamide extends is already licenced and likely to be alive after three survival for men newly available on the NHS for years than men who had “There are some diagnosed with advanced men who are resistant to taken other anti-androgen men diagnosed with prostate cancer compared hormone therapy, could treatments. advanced prostate to taking hormone be an additional treatment cancer who cannot therapy alone. option to take alongside Dr Matthew Hobbs, have chemotherapies hormone therapy. Deputy Director of like docetaxel, and we Currently in the UK, men Research at Prostate want to see another diagnosed with advanced In the study, 1,125 men Cancer UK said that the treatment option made prostate cancer are with hormone-sensitive trial was positive but available to them so that given hormone therapy metastatic prostate added: “It does not show they can benefit from the together with docetaxel cancer were randomly that this is any more additional months of life chemotherapy. A second assigned to receive either effective than the UK’s that having abiraterone or therapy, abiraterone, also enzalutamide or another current standard practice enzalutamide can provide. similarly improves survival anti-androgen treatment of giving docetaxel We will be working with in these men, however it’s alongside the standard chemotherapy upfront in appraisal bodies and the still being appraised for of care (hormone therapy combination with hormone manufacturers to find a this use on the NHS. with or without docetaxel). injections. We therefore way to make this happen.” FROM THE LAB Focal therapy put to the test Current treatments To make sure that the results of a study like this are Professor Hash Ahmed like surgery and reliable, hundreds of men need to take part. So before radiotherapy for time and money is invested in a large clinical trial, the early-stage prostate researchers need to be sure that men will want to cancer often cause join the trial. To test this, they will use their Research a wide range of side Innovation Award to run a pilot study called effects. That’s why there CHRONOS with 60 men. is a lot of interest in what’s known as focal At the end of the trial, the researchers should be able therapy, which could to compare focal therapy, whole gland therapy, and help to reduce the focal therapy plus medication to see which has the best impact of treatment chance of controlling the cancer while minimising for some men. side effects. Focal therapy means treating just the area with cancer, “CHRONOS is the next step to making focal therapy while leaving the rest of the prostate undamaged. a reality. If we can confirm focal therapy is an effective However, these treatments are only available in treatment for cancer that also minimises side-effects, specialist centres or as part of clinical trials. Before they the potential impact to men will be immense,” says can be a standard treatment across the UK, we need Professor Ahmed. to know whether they really work as well as traditional If the pilot study is a success, Professor Ahmed and treatments like surgery and radiotherapy. his team will try to get funding for a larger trial. This That’s why we’ve given a £500,000 Research Innovation would aim to confirm that focal therapy is an effective Award to Mr Taimur Shah and Professor Hash Ahmed treatment for prostate cancer, and causes fewer side at Imperial College London to run a small clinical trial effects than standard treatments. comparing focal therapy to surgery or radiotherapy.

If you’d like to comment on this or other news stories, go to prostatecanceruk.org/news and join the conversation

Insights | Summer/Autumn 2019 5 One man dies every 45 minutes of prostate cancer in the UK – that’s two men during every football match. It’s a statistic that’s shocked people across the UK and won the support of football fans everywhere.

We always aim to be wherever men are and reach One supporter recently wrote to Jeff saying, “I watch them on their terms. So what better way to speak to you and the team every Saturday and this makes my millions of men each weekend than through the power weekend a happy time. I must thank you and the team of football? We’ve become difficult to ignore in football, for making everyone aware of this disease. I’ve been especially with the growing popularity of our ‘Man of fighting it for five years. I’ve sent a donation to the Men’ pin badge. charity. I’d be very grateful if you could send me a pin badge to wear with pride.” Our badge has graced the lapel of almost every football manager and Sky Sports pundit in recent years We’ve partnered with the League Managers Association including Manchester City boss Pep Guardiola, England since 2013, working with many of their high-profile manager Gareth Southgate and Sky Sports presenter members to raise awareness of prostate cancer. The Jeff Stelling, as well as thousands of fans. We’ve grown likes of Alan Shearer, Sam Allardyce, Eddie Howe, Chris an army of supporters through our work in football, Hughton and Rafa Benitez have all backed our cause. raising millions of pounds along the way and making more men aware of prostate cancer and their risk. “I think what I’ve seen in the last 20 years is the power of sports like football, in terms of its influence and how “In my era, nobody spoke about it. But we do need it can raise awareness of different types of issues,” to talk. It’s amazing when people realise that I’ve got it, says Gary Neville. they will come up and talk about little doubts in their mind,” says former England goalkeeper “I see most managers up and down the country on Ray Clemence, who has advanced prostate cancer. a Saturday or Sunday afternoon, when I’m covering the games on Sky, wearing this ‘Man of Men’ badge. “I think there is genuine awareness now which five People in prominent positions in football can have years ago, there wasn’t at all. It’s amazing really. You such a powerful influence.” never see an interview without the manager having the badge on and all the lads are wearing it on Sky Sports.” Another partnership with the English Football League for six years led to raising £4 million with the support of 85 EFL clubs, 3,500 match day volunteers, and over Raising awareness 2,000 football fans who took part in our annual Our long-standing ambassador Jeff Stelling has Football to Amsterdam fundraising cycle ride. not only raised awareness of prostate cancer by wearing our pin badge with the rest of the panel on “Football to Amsterdam is always a highlight for me. Soccer Saturday, but he’s also on a mission to raise The camaraderie on the ride is fantastic,” says Charlton £1 million. The backing from football fans has been fan Tracy Leaburn, whose dad died from prostate astounding – over 1,000 supporters have joined Jeff cancer. “Everyone mucks in to help each other over the on his challenges and hundreds more will join him in finish line. It’s just a great weekend that really brings September as he takes on four marathons in four the football community together. I’m so proud that our days across the four home nations. team has grown from three riders to 40 riders in just four years.”

6 Insights | Summer/Autumn 2019 Our badge has graced the lapel of almost every football manager and Sky Sports pundit in recent years.

We’ve since joined forces with The Vanarama National League to continue our work supporting Saving lives Non-League Day every October. Last year, Vanarama The 2018/19 football season welcomed a host of new officially changed their name to MANarama for a opportunities as we partnered with Millwall, Nottingham six-week period raising a further £150,000 to Forest, Derby County, Northampton Town and Queens support more funding for research. Park Rangers. We teamed up with League One’s Southend United to become their official shirt sponsor for the season and it’s a partnership which has proved a life-saving success. Keith Smith, from Basildon, was prompted I think what I’ve seen in the last to visit his doctors after noticing the work the League One club and its former manager Chris Powell had 20 years is the power of sports been doing with us. like football, in terms of its “I was looking at Southend United’s website to see if there was any news on us signing a player, and I saw influence and how it an article on there with Southend regarding prostate can raise awareness cancer. I was looking through and reading what you should look out for, and I thought ‘that’s me, I’ve got of different issues. one of them symptoms.’ I looked it up further and Gary Neville eventually went to the doctor, and after a range of tests it was confirmed I had prostate cancer,” Keith recalls. “Basically, I knew very little about prostate cancer until a year ago. My dad had it, unfortunately, my uncle had it as well and I didn’t realise it was hereditary. Until I discovered I had prostate cancer, I never realised there were so many risks that I had. I should’ve really been checked out earlier, but I was so oblivious to it.” Together, fans, players, managers and pundits are helping to bring awareness of prostate cancer to millions of football fans every week, who outside of football might not have known anything about it. Our mission remains to show that no matter what team people support, we are united for one cause.

7 I had a feeling that it wasn’t over:

A diagnosis of prostate cancer can trigger a lot of questions for a man and his family, and this can be Cutting off escape routes amplified even more if the cancer has been spotted Although we might often talk about the cancer for the second time. But there is still so much that ‘coming back’, that doesn’t really describe what’s we don’t know about recurrence. Who are the men happening – the cancer never really went away in the this happens to? How many of them are there? first place. This is either because some cancer cells And how can we stop it? Dr Sophie Lutter tries to had already escaped the prostate undetected before find some answers and shares the research that a first treatment, like Martin’s surgery, or because the we’re funding to help improve the situation for men. treatment didn’t kill all the cancer cells first time round. Prostate cancer that’s caught while it’s still contained This is something that our researchers are working hard within the prostate is curable with surgery or radiotherapy. to address. Dr Richard Clarkson, at Cardiff University, But that doesn’t mean that it is always cured. has identified some very resilient cancer stem cells in the tumour that are resistant to, or somehow escape, The elephant in the room; an obvious stumbling block treatment. He thinks that these are the cells responsible in our ambition to save lives through early detection of for the spread of prostate cancer around the body, prostate cancer, and the haunting question that’s likely even after surgery or radiotherapy. to worry most men who’ve been treated for localised prostate cancer is… what if it comes back? Dr Clarkson’s team has developed a new drug that specifically targets these cancer stem cells and is That fear unfortunately became a reality for Martin Wells. currently testing it in prostate cancer samples in the lab. The self-employed trainer was diagnosed in December If successful, they believe that this drug could help to 2007, aged 54. “Initially, the doctors thought they’d prevent recurrence in men with high risk cancers. caught the cancer early, and that it was contained within my prostate. But somehow, even after I had the Meanwhile, Dr Susan Heavey from University College prostatectomy, I had a feeling that it wasn’t over,” he says. London is taking a slightly different approach. Dr Heavey has perfected a technique to keep prostate cancer “So, on one level it wasn’t really a surprise to find out samples alive in the lab for a couple of days. In this five months later that some of the cancer had escaped Movember-funded project, she will use these ‘direct before the surgery after all, and I’d need radiotherapy from patient’ samples to test new drugs and drug and over two years of hormone suppression to get combinations to shrink the cancer. Dr Heavey hopes my cancer back under control. that giving additional drugs immediately before and after “Statistically, I knew even that wasn’t the end of it.” surgery could reduce the risk of the cancer coming back.

The doctors thought they’d caught the cancer early, and that it was contained within my prostate. But somehow, even after I had surgery, I had a feeling that it wasn’t over. Martin Wells

8 Insights | Summer/Autumn 2019 The problemThe problemThe ofproblem of of recurrencerecurrencerecurrence

Dealing with it coming back As if it wasn’t complicated enough, recurrent prostate cancer also comes with its own dictionary of confusing language. For many men, the first sign that their cancer is back is a continuous rise in PSA levels, following a sharp decline after treatment. This is called biochemical recurrence, and it can occur without any symptoms and before the cancer can be detected on a scan. While there are plenty of treatment options for prostate cancer that has come back after a first treatment, the debate about whether or when to treat remains just as fierce as it is after a man is first diagnosed. PSA tests are getting more sensitive, which means that doctors can detect lower PSA levels and smaller changes. On the one hand, this means that recurrent cancer can be detected and treated earlier, maximising the chance of stopping it once and for all. On the other hand, these cancer cells may be extremely slow growing, and not need immediate further treatment, after radiotherapy in particular. In this case, as with diagnosis of low-risk localised disease, early detection may just contribute to additional anxiety, and perhaps unnecessary side effects from overtreatment. For some men, this debate comes too late. When the doctor can see evidence of the cancer on an MRI or bone scan, you may hear it called radiographic recurrence. At this point, there’s no question that it needs additional treatment. “Eight years after I finished hormone therapy, my PSA levels started to rise again. They continued to increase every three months and eventually my oncologist and I jointly agreed it was time for another scan. These confirmed that the cancer was back, and that it had spread to my hip and lung,” Martin recalls. “At my last appointment, I formally requested to see all my CT and bone scans. Even though I don’t really know what I’m really looking for, it helps me feel more in control to think that I can see the cancer now. It’s not in control of me. I can see it, and I can manage it.”

9 Known unknowns Prof. Ananya Choudhury There is surprisingly little data available about the number of men who experience recurrence after first line surgery or radiotherapy for prostate cancer, although a couple of recent clinical trials suggest that it’s likely to be around 10–15 per cent for men with low- to intermediate-risk disease. But we do know that the chances of a man’s first treatment being completely successful varies depending on the location of the cancer, the aggressiveness of the disease, and the stage at diagnosis. Collectively, these factors contribute to determining a man’s risk status. Unsurprisingly, it’s more likely that a man with high-risk Professor Claire Lewis and Dr Janet Brown at the prostate cancer will find that his cancer comes back University of Sheffield are also trying to improve after treatment than a man with lower risk disease. upfront treatment for high-risk localised cancers, but There are two important ways that we can tackle this. their approach will turn the cancer’s own protective The first is to get better at diagnosing the disease mechanisms against it. They think that the same accurately in the first place – that means working out immune response that helps wounds to heal may whether any cancer cells have escaped the prostate also help the cancer to recover from radiotherapy. even before you can see them. This is something The researchers have identified a specific type of that Professor Ananya Choudhury at the University of immune cell that is responsible and are working to Manchester is concentrating on. reprogramme these cells to produce anti-cancer She and her team are analysing patient data to see proteins instead. They will test this approach first in how treatment success is affected by how much mice and then, if successful, apply for further funding radiotherapy a man received, how it was delivered, to start a clinical trial in men with high-risk localised and his risk factors. They will use the results of this prostate cancer. analysis to create an algorithm that predicts which men are likely to have cancer that’s already escaped the prostate, and so will benefit from additional lymph node radiation. Reducing risk The other thing we can do is to get better at treating the cancer upfront to reduce the risk of recurrence, even in high risk men like Martin. Prof. Choudhury aims to do this in a second project that we’ve funded, with support from the Movember Foundation. The researchers have evidence that radiotherapy works less well in men whose tumours have very low oxygen levels. They are developing a test to identify these men by looking for a particular gene signature in the cancer. If we can identify these men before they start treatment, they can be given additional drugs to increase the oxygen levels in their tumour and improve how well the cancer responds to radiotherapy. The team are currently validating this predictive tool and aim to test it in clinical trials soon.

Help us fund more research like Prof. Choudhury’s to treat prostate cancer more effectively. Go to prostatecanceruk.org/ins-donate

10 Insights | Summer/Autumn 2019 “It’s exciting and hopefully within the next 12 months Looking to the future we’ll have a good steer as to whether we do have a The more critical question than how many men biomarker that is ready to be tested in a clinical trial. experience their cancer coming back, is how many of those men, like Martin, are diagnosed with advanced “None of this would exist without the generous disease after a previous treatment for localised prostate donations and the belief that Prostate Cancer UK cancer. Staggeringly, there is no data available to supporters have in the work that we do. And if we answer this question. One oncologist we spoke couldn’t do that work, I couldn’t offer that potential of to estimated that up to half of men with advanced hope to the patient sitting in my clinic.” prostate cancer have previously had treatment for localised cancer. However, there is research to suggest that three per cent of all men who are treated for localised disease still die from prostate cancer, but this is higher for If we couldn’t do that work, men with the most aggressive disease. I couldn’t offer that potential For Martin, it’s still very unclear what the future holds: “My oncologist won’t and can’t give me a definitive of hope to the patient sitting answer as to how long I’ll survive. I know it’s all statistical. Lots of things are vague. in my clinic. Prof. Ananya Choudhury “As far as I know the cancer will probably grow again in about two years and I’ve a five-year survival chance of If you’re worried about your cancer coming back after about 30 per cent. What I’m actively working on now is treatment, there’s some information about what you to be upbeat, positive and happy that I’m alive and well, can do and further treatment options in The Manual and not to let those frequent negative conversations that on page 16. You can also call and speak to our go on in my head get to me before the cancer does.” Specialist Nurses directly on 0800 074 8383. To stop this happening to men like Martin in the future we have to improve both diagnosis and treatment. We need to get a lot better at working out a man’s risk of recurrence and improving treatments for those who are at high risk. “We are looking at it from both angles and will hopefully shed some light in both those areas,” says Prof. Choudhury.

11 It’s the thing that’s been missing for several years.

Many men face side effects that affect their lives Following on from this small study, the researchers are long after prostate cancer treatment. This could be now scaling it up into a larger trial. For more information sexual problems such as trouble getting erections, and resources visit www.redi.help mental health issues such as depression and problems with incontinence. Talking about sex The TrueNTH programme is using research to tackle Sexual dysfunction is the most common side effect these critical areas of prostate cancer care. It aims to of prostate cancer treatment and most men feel improve the quality of life for men with prostate cancer they haven’t had sufficient support for dealing with and for them to feel knowledgeable and confident it. Researchers at Ulster University developed three about managing their condition. resources to help address this problem: an e-learning module for clinicians, a tool to help guide conversations TrueNTH is an international programme funded by during appointments and a website to provide support the Movember Foundation. In the UK, all of the projects and information for men. are delivered in partnership with us and two of these have recently developed new resources for men and The team saw that both men and health professionals health professionals to improve sexual wellbeing found it useful and liked that it could be used flexibly. and physical activity. One man said, “I actually found it quite encouraging to be told that erectile problems are a common issue Getting healthy for lots of men, not just me.” The TrueNTH Exercise and Diet study was the first in the UK to test whether a programme in pharmacies While a specialist nurse commented, “I found it could increase physical activity and improve the health really helpful, having not always had a lot of those of men with prostate cancer. This was based on conversations, just to bring it to the forefront.” evidence that men who increase their physical activity The website for men affected is by three to four hours per week reduced the risk of www.prostate.lifeguidewebsites.org cancer recurrence and symptoms after prostate cancer treatment. Each of the men received a personalised assessment and lifestyle prescription, and 88 men completed the six-month study. Most of the men taking part had poor physical fitness to begin with and were considered obese. More than a quarter of the men improved their levels of physical activity and most were happy to take part in the pharmacy programme, with one saying: “I’m just glad that I had the opportunity to do it because it has kick started me. I jumped at the chance because I thought I’ve either got to do this or just bin it and carry on with how I’m going. It’s the thing that’s been missing for several years – I haven’t looked after myself.”

For more support on these and other areas, contact our Specialist Nurses on 0800 074 8383

12 Insights | Summer/Autumn 2019 slowing and preventing £50m total hormone therapy resistance and trialling spent on more targeted, precision research medicine. They will lay crucial groundwork so We have funded eight new more men can survive research projects this year, prostate cancer, with which has taken our total fewer life-changing spend to £50 million since side effects. the charity began in 1996. The new projects are part of our Research Innovation Awards – a scheme dedicated to funding the most impactful and imaginative research the field has to offer. They focus on new ideas that tackle taming prostate cancer from a completely new angle. Seven of the eight projects are honing in on finding better treatments for prostate cancer, such as “It’s a real honour to be New Director appointed to such a share our philosophy: fantastic charity. 1 in 8 Men, we are Men, we are with you. of Research men in the UK will get In March, we welcomed prostate cancer in their with you The advert also features Dr David Montgomery lifetime, and I’m excited This summer we have men and families affected to lead our research to have the opportunity launched a major new by prostate cancer, programme into a new era to use my experience campaign to highlight the such as Ally below. He of growth. David trained both in medicine and the impact of prostate cancer. has advanced prostate as a surgeon and worked pharmaceutical industry cancer but is now taking in breast cancer research to help make a real Our advert focuses on part in one of our clinical before moving to the difference for these the incredible things that trials after his treatment pharmaceutical industry, men,” says David. men do in their lives and stopped working. so he brings a wealth of highlights what we lose Our main aim with this experience to the charity. when one dies every 45 minutes. We want to campaign is to inspire take the opportunity to people to join us and be a We rely heavily on the celebrate men and to part of solving the problem. Investing in support of our volunteers, so it is great to see that volunteers we can give them the best Prostate Cancer UK experience possible. has been awarded the Investing in Volunteers accreditation for the second time. This quality standard is only held by six national organisations and involves a rigorous assessment process with more than 300 people interviewed.

Insights | Summer/Autumn 2019 13

PROSTATE CANCER AND ME Bill Turnbull

When our ambassador, scary moment. It was for former BBC Breakfast me. Particularly because it presenter Bill Turnbull had already spread to my revealed he had bones and the long-term advanced prostate outlook wasn’t good at cancer in March last all. It was a big shock for year no one could have me and for my family, and foreseen the positive we had some pretty dark impact sharing his times. But luckily, I started diagnosis would have. treatment very quickly We caught up with him after my diagnosis. ahead of a major new Channel 4 documentary. You had nine rounds of chemotherapy. How are It’s been over a year you doing now? since you revealed your diagnosis, and a lot has Bill: The chemo wasn’t happened in that time. pretty, but was fairly effective. Since then I have Bill: When you’re felt a lot better as time diagnosed with prostate has gone on. My immune cancer it can be system has improved and a pretty my body is more back to ‘normal’. I did put on more than a stone in weight due to the steroids I had to take, but that’s all come off again now, thank heaven.

I’m currently on a more gentle treatment, just a hormone injection every twelve weeks, and another to strengthen the bones. I’ve gone meat and dairy free, and as a result feel pretty good at the moment. I’ve also started doing yoga again regularly – and meditating, which I find particularly useful.

14 Insights | Summer/Autumn 2019

Hearing from men who have been diagnosed as a result of me speaking out – I can’t tell you how much that means to me.

The continued You mentioned your Stephen had announced It’s a great consolation outpouring of support beloved Wycombe that he had been treated to me to know that while must also have helped. Wanderers football successfully for prostate my disease is advanced, club where you often cancer a little earlier, so many men have been Bill: I like to say I have been commentate on games. it made sense to talk to saved a lot of difficulty by buoyed by a thousand How important is sport him for the programme. getting an earlier diagnosis. points of love! From in getting the message And he very graciously friends and colleagues, out there? agreed to meet us. Like Tell us a little more my footballing family at me, he’s happy that his about what else we can Wycombe Wanderers, Bill: I would estimate experience has had such expect from the film. and from countless that at least half the men a positive effect. messages from people who attend games are Bill: We’re trying to paint just wishing me luck. middle-aged, and so The NHS had a huge a picture of what it’s potentially at risk. One surge in men speaking like to live with prostate Also hearing from men man in eight gets it, so to their doctors about cancer, to show how it who have been diagnosed we need to reiterate that prostate cancer last feels to ride the Big C and treated as a result of if you are over 50, black, year. Were you shocked rollercoaster. There’ll be me speaking out – I can’t or have a family history of by the impact the one or two surprises tell you how much that the disease you should so-called ‘Turnbull/Fry’ in it. If the final result is means to me, and gives speak to your doctor. It effect had? anything like the making me strength for the time may just save your life. of it, you’ll laugh and you that lies ahead. Bill: I was amazed to hear might cry, but most of all It’s also really useful how many people had I hope you’ll learn a lot. How important has to take some form of got themselves tested. keeping a positive mental exercise, even if it’s just attitude been for you? a walk around the block Bill shortly after his chemo treatment with football once a day. Bill: It’s hugely important managers Gareth Ainsworth and Chris Powell to stay positive – that’s You met Stephen Fry part of the treatment really. recently for a Channel 4 You can’t let this disease documentary you’ve get on top of you because been filming. How psychology has a lot to was that? do with it. One thing I’m not going to let it do is get Bill: We started making me down because then it the documentary after my wins. And I’m not going appearance on Celebrity to let it win. Bake Off, when I revealed my diagnosis. All of a sudden, after years of covering the news, I was the news, which felt a bit odd.

To find out more about your risk of prostate cancer visit prostatecanceruk.org/risk

Insights | Summer/Autumn 2019 15 THE MANUAL Your questions answered about if your prostate cancer comes back after treatment

Although many men Why has my cancer come back? with localised or locally advanced prostate cancer will have A common question we get is, “how can my treatment that aims prostate cancer come back if my prostate gland to cure the cancer, has gone or all my cancer was destroyed?” Although we there’s always talk about prostate cancer ‘coming back,’ in fact, if it a chance that does come back, it’s likely it will have been there all along. treatment might This could be if your first treatment didn’t get rid of all of not be successful the cancer cells in your prostate or there were tiny clusters and it might come of cells left behind in, or just outside, the prostate. back. This is known as recurrence and can be Over time, these may have grown large enough to be a worrying thought for picked up by tests or to cause symptoms. It’s also many men. possible that tests or scans you had when you were diagnosed might have missed small clusters of cancer Our Specialist Nurse, cells outside your prostate, for example in your lymph Ali, answers some of nodes or bones. In this case, your first treatment your questions about would not have been aimed at these cells. prostate cancer coming back after treatment.

Although we talk about prostate cancer ‘coming back,’ in fact, if it How will I know if my prostate cancer does come back, it’s likely it will comes back? have been there all along. Some men ask us if they should be looking out for any signs of their cancer returning. But actually, Can cancer that comes back be treated? the first sign that your cancer might be coming back is more likely to be a continuous rise in the level of prostate specific antigen (PSA) in your blood over a Yes, there are plenty of treatments for prostate number of tests, than any physical signs. Any rise in cancer that comes back (recurrent prostate your PSA should be picked up by the regular PSA tests cancer) and these are sometimes called second-line you will have after treatment (called ‘follow-up’), usually or salvage treatments. Many of them are the same as about every three months. You can write them down treatments for prostate cancer when it’s first diagnosed, each time, so you have a record to refer to. such as radiotherapy, brachytherapy, hormone therapy or high-intensity focused ultrasound (HIFU). The exact change in PSA level that suggests your The choice of second-line treatment will depend on cancer has come back depends on which treatment what you had first. For example, surgery isn’t often you had. And if you do have a rising PSA level, your available as a second-line treatment because first doctor may do other tests to check if, and where, treatments, such as radiotherapy, damage the your cancer has come back such as PET-CT, CT, prostate and surrounding tissues, making it MRI or bone scan. harder for a surgeon to remove the prostate.

16 Insights | Summer/Autumn 2019 There are two main types of treatments – those that aim to get rid of the cancer (curative treatments) and It can be very difficult to learn that your prostate those that aim to delay the cancer growing but won’t cancer has come back. All the thoughts and get rid of it. What you’re offered will depend on a feelings you had when you were first diagnosed can number of things, including where your cancer is, come back again and they may be even stronger your general health, your PSA level and what than before. Lots of men find it helpful to talk to treatment you’ve had already. someone about their feelings. This might be a friend or family member or someone who is trained to I already have side effects from my first listen, like a counsellor or your doctor or nurse. treatment. Will I get more if I have You can also call one of our Specialist Nurses more treatment? on 0800 074 8383. If you’re already experiencing side effects from Remember, for many men, prostate cancer is treatment, such as leaking urine or problems getting slow-growing even when it comes back after an erection, it can be natural to worry about what the treatment. Lots of men with recurrent prostate side effects might be if you have more treatment. cancer continue to live long and active lives. The risk of side effects is usually higher for a second-line treatment compared to a first treatment. This is because your first treatment may have already caused some damage to the tissue surrounding the prostate. Side effects may also be more severe with a second-line treatment. Ask your doctor or nurse to talk you through the possible side effects from the second-line treatments they offer you. If you do experience side effects, there are treatments and support available to help manage them.

If you do experience side effects, there are treatments and support available to help manage them.

For more information, read our booklet ‘If your prostate cancer comes back: A guide to treatment and support’

Insights | Summer/Autumn 2019 17 The magnificent marchers Come rain or shine, you turned out in droves

A huge thank you to everyone who marched with raise funds for vital research and to support men and us at our 10 local March for Men events in June. their families. It was the biggest year yet. Here are just a few of the photos and stories from More than 7,000 of you came together across the UK our walkers. You can find more on our website at in Belfast, Birmingham, Bristol, Cardiff, Glasgow, Leeds, prostatecanceruk.org/marchstories Liverpool, London, Manchester and Nottingham to

Brian and Specialist Nurse Meg finally meet in Bristol Glandel Thompson cuts the ribbon in Bristol, a year on after talking for hours on our helpline. from his own treatment for prostate cancer.

Ralph Ellis’s family walks to remember him, one year Mason was the first across the line in Liverpool last year after his Football to Amsterdam ride for us. and came back to march again in 2019.

If you couldn’t make one of our arranged events, don’t worry! See page 20 for details on how to organise your own.

18 Insights | Summer/Autumn 2019 In the SPOTLIGHT THANK “From the third day of Fraser Love being home I started my “I have been honoured with training. First, I walked YOU the chance to wear my to the nearest lamp to brother’s kilt for the walk, my house, the second so he will be there in spirit the next day and so on. to push me on through the At three weeks, I was at £9,500 toughest parts.” three miles and have just The Boot Inn in built up from there. Lapworth raised an Fraser Love’s brother died incredible amount from prostate cancer a “I class myself as so lucky. from their annual few years ago and his dad Lucky to have cancer? Christmas lunch. had also been diagnosed No. But I’m lucky that with the disease. me mentioning about In September 2018, Fraser my brother and dad to began to experience It was during this time the doctor in a passing rides symptoms and, after he that Fraser decided to statement has saved 4Matt Dainty is taking part happened to mention his do a 15-mile Kiltwalk for my life, and that’s what I Prostate Cancer UK to count myself lucky for. in four of our big cycling family history to the GP, he challenges in 2019 to raise was eventually diagnosed help fund research into the disease. Fraser had “I hope this money goes money for prostate cancer with the disease himself. researchers, like his surgery on 29 January towards a screening wife Hayley. “They are the words no one and has been slowly programme, as that ever wants to hear – ‘you training for the Kiltwalk can ultimately save have prostate cancer.’” throughout his recovery. men’s lives.”

“We’ll not admire Pat’s “To me, the badge is a golfers 88Rick Shiels hosted the garden again, complete DIY reminder, a comfort, and tasks under his meticulous a call to action.” first ever YouTube golf TOP guidance, or watch his day and brought together grandchildren’s faces as For the full poem, visit many well-known faces he flops to the floor and prostatecanceruk.org/ for an amazing event. DAD becomes a multitude topdad of animals, each with a different voice. “I wear [the badge] all the singers time now; it has become 40The Men United in Song as much of my routine as choir in Peterborough is putting a watch on my training singers of all abilities wrist, and I feel something to put on a charity concert. “Raising awareness important is missing if of prostate cancer is I don’t have it. a big deal and I’m keen to do whatever £13,000 I can to spread the After Phil True died from message to men prostate cancer before about the disease,” doing a planned 10K run says David, whose to raise money for research, father-in-law, Pat, his family completed it in was diagnosed with his memory. advanced prostate cancer in 2013 and died of the disease in July 2018.

Insights | Summer/Autumn 2019 19

GET INVOLVED Five things you can do to support us

Organise your own Free Wills Month March for Men October All year round This October, you can For more information or have your Will written to take part, please visit Couldn’t make it to one of Whatever you choose, or updated for free by a freewillsmonth.org.uk our March for Men events it’s your march, your way local solicitor. There is or call 0345 686 4309 this summer? Well, how – and we’re with you every no obligation to include from 9am on 1 October. about organising your step of the way. Register a gift to Prostate Cancer own? You could hike solo your walk and we’ll send UK, but we would be The number of up a mountain or walk you a free fundraising pack extremely grateful if you appointments are limited, around your local park including lots of tips, ideas considered remembering so we recommend you with the whole community and goodies to make your us in this way. book as early as you can. alongside you. march a success. Find out more at marchformen.org/yourmarch Donate your day All year round Got a special day coming Find out more at up? Whether it’s a birthday prostatecanceruk.org/dyd or your wedding day, you can support us while you celebrate by taking a collection or selling badges to your guests. It’s a great way to mark your occasion and we’ve lots of ideas, resources and support to help you. Golf championship Men United match days Autumn Various dates Could you be crowned Cathkin Braes, Shandon Join us at football grounds You’ll meet lots of one of our champion Park, Little Aston, Lymm around the country to like-minded people, enjoy golfers in 2019? Host a and Sandy Lodge. Former collect money from fans the match day buzz, and golf day to raise funds for European Open Champion for the most common get a ticket to watch the us and the winning player Andrew Murray will be cancer in men. match afterwards. will earn a place at one of offering a free golf clinic Find out more at prostatecanceruk.org/matchday three regional finals at the for every finalist on the world-class courses of day, too.

Find out more at prostatecanceruk.org/golf or call 020 3310 7041.

20 Insights | Summer/Autumn 2019 E V EN TS CALENDAR SEPT – DECEMBER 2019 SEPTEMBER OCTOBER NOVEMBER DECEMBER 5-8 Jeff Stelling’s 6 Cardiff Half Marathon 1–30 Movember 2, 4 Carols by March for Men Take part in one of the We want men and Candlelight Having already UK’s biggest and best women to sign up and Join us to celebrate the completed 25 walking road races on an iconic grow a Mo, commit start of the festive season marathons, Jeff takes on course around Wales’ to Move, or throw a at our annual sell-out a new challenge across capital city. Movember event to Carols by Candlelight four nations in four days. raise funds for men’s events in London and Walk with him as he 12 Non-League Day health and stop men Liverpool. Expect visits Glasgow, Belfast, We are the proud official dying too young. readings from celebrity Cardiff and London, charity partner of this guests, mince pies and and help him smash memorable day once 3 Men’s 10K Edinburgh plenty of festive cheer. his £1 million target. again. Visit your local Join thousands in this Sign up to find out Non-League Club, stunning 10K closed when tickets go on sale get behind them and roads run through the prostatecanceruk.org/ encourage them to heart of Scotland’s carols support Prostate beautiful capital city. Cancer UK this The route passes October. Edinburgh Castle, Arthur’s Seat and Holyrood Palace before finishing at the 15 Edinburgh Kiltwalk Murrayfield stadium. Join thousands of people as they don some tartan and tackle 13 Royal Parks a 5, 13 or 26 mile walk March the Month Half Marathon How many steps will you complete raising funds that receive This stunning central in one month? This September an incredible 40 per cent London Half Marathon, top up from the Sir Tom takes in some of the we’re challenging you to March the Hunter Foundation. capital’s world-famous Month by walking 11,000 steps landmarks on closed a day – the same amount of 28-29 Great roads, and four men who die each Scottish Run of London’s eight year of prostate Experience the electric Royal Parks. cancer – to get fit atmosphere, friendly and raise money welcome and excellent to help us beat race day experience, by prostate cancer. taking on a 10K or half marathon in Glasgow city centre.

Check out full details and sign up to all these events, plus many more, at prostatecanceruk.org/events

Insights | Summer/Autumn 2019 21 Our services

Specialist Nurses Information on Prostate cancer The blue men on this 0800 074 8383 prostate cancer support groups map represent the locations of support (Mon to Fri 9am-6pm, Meet and talk to other 0800 074 8383 groups who have Wed 10am-8pm) people affected by We provide free information asked to be listed on Our Specialist Nurses prostate cancer who on prostate cancer and our website. Find a have the time to listen and understand what you’re prostate disease. Order group near you at: going through. There are answer your questions or download copies from more than 120 independent prostatecanceruk.org/ on anything to do with the publications section groups across the UK. supportgroups prostate cancer and of our website or call our prostate disease. Specialist Nurses for help Please note that some choosing the publications Live chat groups run meetings in One-to-one you need. Our Specialist Nurses are more locations than the telephone support available online to answer one listed. your questions and help 0800 074 8383 you find the information Talk things over with you need. someone who’s been there. We can match you with All I heard the trained volunteers who’ve had a similar experience. doctor say was, ‘you’ve got Online community cancer’. Things Join the community online and talk to others who know only started what you’re going through. You can ask questions, falling into place post information and share after I spoke to a your ups and downs. community. Specialist Nurse prostatecanceruk.org at Prostate Fatigue support Cancer UK. 0800 074 8383 Service user If you have prostate cancer and you’re struggling with Regional services fatigue, our Fatigue support To find out what local service is designed to support and services are help you manage your available in your area go tiredness so you can do to prostatecanceruk.org/ the things you want to do. find-local-support

Find out more about our services at prostatecanceruk.org/get-support

22 Insights | Summer/Autumn 2019 Other useful organisations Our online

Bladder and Bowel UK Maggie’s Centres community www.bbuk.org.uk www.maggiescentres.org 0161 607 8219 0300 123 1801 Information and support Provide information and for anyone experiencing support to anyone affected bladder and bowel by cancer. Their website problems. holds a list of centres across the UK and has British Association an online support group. for Counselling and Every month, thousands of people use our Psychotherapy NHS Choices online community, posting messages in hundreds www.itsgoodtotalk.org.uk www.nhs.uk of active conversations. The community is for a 01455 883 300 Provides information to wide range of people who may have been Provides information about support you in making affected by cancer. counselling and details of health decisions, including It is a welcoming and supportive place where men and therapists in your area. an A-Z of treatments those close to them can openly seek and offer support, and conditions, and Cancer Black Care ask questions and share information. Many also share information on NHS health their personal stories and experiences of prostate cancer. cancerblackcare.org.uk services in your local area. 020 8961 4151 Being a part of our online community can provide Provides information and Penny Brohn UK great comfort: support to people from www.pennybrohn.org.uk black and minority ethnic 0303 3000 118 “On the forum I found a group of people communities who are Offers support using all connected by the disease whose affected by cancer. complementary therapies collective knowledge and understanding and self-help techniques helped me understand my situation. Cancer Research UK – working hand-in-hand I truly believe membership to this forum cancerresearchuk.org with medical treatment. should be recommended by medical 0808 800 4040 professionals at diagnosis.” Provides information Relate about living with cancer. www.relate.org.uk “It has been four months since 0300 100 1234 my husband received his difficult Complementary Relationship counselling diagnosis and I want you all on and Natural and sex therapy for the forum to know how much you Healthcare Council individuals and couples. have meant to us as we learn www.cnhc.org.uk about this disease.” 020 3668 0406 Sexual Advice Details of complementary Association The online forum is open for people to take a look therapy practitioners who www.sda.uk.net around and read through the conversations without meet national standards of Website and app with becoming a member. Forum questions, answers, competence and practice. advice and information advice, support and information are viewable about erectile dysfunction. whether you’re a member or not. Macmillan Cancer Support Tackle Prostate Cancer If you’d like to become a member and participate www.macmillan.org.uk www.tackleprostate.org more, all you need to register is an email address 0808 808 0000 0800 035 5302 and a username. (Mon-Fri, 9am-8pm) Also known as the Provides practical, financial National Federation of As part of this community, you can talk about and emotional support for Prostate Cancer Support whatever you want, from diagnosis to dealing with people with cancer, their Groups, it works closely treatment. Simply browse the conversations to join family and friends. with us to provide local one, or start your own if you’d prefer. support to patients and families. Visit prostatecanceruk.org/online-community

23 5655 Prostate Cancer UK is a registered charity in England and Wales (1005541) and in Scotland (SC039332). Registered company number 02653887.