Prostate cancer

InsightsIssue 11 | Winter/Spring 2018 Perfect pitch The black men using golf to save lives

Prostate cancer and me MICHAEL HOLDING

Our biggest ever research programme The million-pound plan to kickstart a precision medicine revolution Insights | Winter/Spring 2018 1 Inbox Prostate cancer and Get in touch and me: Michael Holding have your say The former Editor’s 3 14 bowler talks to us about INBOX Very well done you football note managers and players Prostate cancer news going public with his family Tell us what you think about the magazine and our stories online at When I ask people what [supporting our awareness The latest research history of prostate cancer prostatecanceruk.org/news. We want to hear what you’ve got to say. developments and why he thinks the they know about Prostate drive]. Young men look to 4 disease is still a taboo Cancer UK, often the first you as role models: you Our precision thing they say is that we’re are an inspiration! plan of attack The Manual an awareness charity. And Geoff Ludden Find out more about Our Specialist Nurse while that’s partly true, 6 our biggest ever answers your top our huge role in scientific Dear Insights Dear Insights research programme 16 questions about treatment research is often missed. I am getting very annoyed with the GPs are unaware of many aspects ONTENTS that hopes to propel once hormone therapy Perhaps that’s because negative comments, both in the of prostate cancer. My GP thinks my prostate cancer stops working well last magazine and on Facebook, PSA level should be about five

C it’s only now we’re seeing treatment into the major progress regarding the lack of progress made because I am 78 years old, even the modern era Marching for men we’ve helped fund in in certain areas of treatment – instead though he knows I underwent a radical where you live understanding and of welcoming the good progress in prostatectomy 12 years ago and so The trials and How one supporter treating prostate cancer. many other areas. it should be below 0.2 (it’s currently 18 organised a March undetectable). Many men have died rewards of a Take Dr Val Macaulay, I was diagnosed with prostate stubborn scientist for Men in Belfast, plus due to GP incompetence! CORRECTION who talks to us on p10 cancer after four years of monitoring 10 Dr Val Macaulay tells us our top tips for doing In the last issue, we about how our support my high PSA levels, fluctuating Ivan Arnold, via email how your donations over your own mistakenly said John over 16 years has helped between about 10.8 and 15, and then more than a decade Brown raised more her turn a microscopic a second biopsy last year revealed have helped turn her lab Running a marathon than £6,000 at his observation in the lab into traces of cancer. The treatment I have research into a clinical in every country in retirement party, when it a potential clinical trial of a received since has been first class. trial of a new treatment the world new drug today. was actually from a talk 19 Plus Top Dad and thanks My prostate was removed last February he arranged by former and I am making good progress. The black golfers to our fundraisers And it’s only thanks to this Dear Insights Monte Carlo Rally I recently had my prostate removed saving men’s lives gathering momentum of Detection techniques need to be winner Paddy Hopkirk at Royal United Hospitals Bath and We talk to the Get involved prostate cancer research evaluated before they become at an Isle of Man hotel. have never looked back, thanks to our 12 taboo-busting Upcoming events for we’ve helped to create that readily available to everyone. Our apologies to John. wonderful NHS and unbelievable help African Caribbean spring and summer, we’re now able to launch But until the magic bullet is found, from Prostate Cancer UK. Golf Association 20 and five ways you can our biggest ever research current techniques seem to work SIGN UP TO OUR programme to mainstream help us raise money in the majority of cases. Prostate So it’s now payback time and so MONTHLY EMAIL: precision medicine (see p6). Prostate Cancer UK Cancer UK is doing a great job far I’m one-third towards my target Get all the latest update Our support But the biggest thanks and deserves credit for the to cycle 5,000km and raise £5,000 prostate cancer news, All the latest from us and services must go to you for all advances made. by the end of my 70th year in 2018. views and events from 13 How we can help you The climax will be reaching the us direct to your inbox – your generous donations 22 Let’s be a bit more positive. just enter your details at that help make this work finishing line of the Grand Depart possible. Please tell Jeff Palmer, via email Classic – 195km cycling in one day, prostatecanceruk.org/ others what we’re doing together with 80+ other cyclists, in insights so everyone knows we’re an attempt to raise £180,000+ for as committed to scientific Prostate Cancer UK. GET IN TOUCH! research as we are to You can contact us via Gordon Friend, via email raising awareness. social media or email on the addresses below, p12 or write to us at: Insights magazine Prostate Cancer UK Fourth Floor, The Counting House Editorial team 53 Tooley Street Dr Sophie Lutter London SE1 2QN Gary Haines Philippa Bell p10 p18 Sarita Lowton Like us on Facebook: Follow us on Twitter: Email the Insights team: Dominic Bates (Editor) Prostate Cancer UK @ProstateUK [email protected]

2 Insights | Winter/Spring 2018 Insights | Winter/Spring 2018 3 National Prostate Cancer Audit reveals fewer men being PROSTATE CANCER NEWS undertreated but many still diagnosed too late A recent report by outcome of their treatment. looks to be patchy across care that uses mpMRI Discovery of ‘metastatic signature’ raises hopes of early the Royal College of It shows fewer men with and Wales. scans to reduce average Surgeons shows more advanced prostate cancer prostate cancer diagnosis identification of lethal prostate cancer men are getting an were undertreated in Welsh Health Boards time to just eight days and appropriate level of 2015/16 compared to the are lagging behind the referral-to-treatment time Deciding whether to Researchers at the Belfast- A cluster of 70 genes a patient. It means they treatment when it comes year before, and fewer NHS in England when it to 20 days. treat localised prostate Manchester Movember expressed in metastatic risk not treating a cancer to prostate cancer. But men with low-risk disease comes to ensuring this cancer or not is one Centre of Excellence – tumours were also found that later progresses and issues with late diagnosis were treated unnecessarily ground-breaking technique Funded by the National of the biggest dilemmas funded by the Movember in some prostate cancer could be fatal, or treating persist and the use of – which is probably due to becomes a routine part of Cancer Transformation for men and their Foundation – have samples. The researchers a cancer that would never more advanced multi- more men being offered the diagnostic pathway. Programme, the new doctors. Now new discovered a ‘metastatic then cross-referenced cause any harm and risk parametric MRI (mpMRI) active surveillance. But since the audit data process sees patients research could help signature’ in the genetic this genetic code against potentially serious and scans for diagnosis is was collected, areas like receiving an mpMRI scan identify which cancers code of some prostate a huge, publicly-available life-altering side effects. still not standard practice. But worryingly, the Newport and Cwm Taf and report, a clinical review are likely to spread and cancer cells, which could collection of prostate audit also shows large have made great strides and – if necessary – a which are harmless. identify aggressive tumours. biopsies and found it It’s hoped that testing The National Prostate numbers of men still being towards implementing targeted biopsy all on the correctly predicted which for these ‘metastatic Cancer Audit is a ‘state diagnosed at an advanced mpMRI in their hospitals. same day. prostate cancers would signature’ genes could of the nation’ report on stage of the disease, when go on to spread beyond help doctors identify which prostate cancer care in they have less chance of NHS England has also the prostate. men wouldn’t be safe on England and Wales, based survival. And the use of recently announced active surveillance, as well on data collected from the mpMRI scans before a first funding for a pilot project Currently, doctors can’t as men who are at risk of point men are diagnosed biopsy, which can improve at three NHS Trusts, be 100 per cent certain cancer recurrence after right through to the the accuracy of diagnosis, testing a new model of about whether a prostate prostate surgery and so cancer requires treatment should be offered more or not when diagnosing radical treatment. Creating the UK’s first FROM THE LAB screening programme A year ago, we awarded a grant to a consortium most basic, but the easiest to perform well during a BEHIND THE HEADLINES: Is a new type of radiotherapy a of researchers across the UK, Netherlands, the standard GP appointment. The other two included US and Canada to develop a prostate cancer risk more detailed tests that may give a more accurate risk miracle cure for men with advanced prostate cancer? prediction tool. It would be designed to be used prediction, but might be more difficult for doctors to do. in GP surgeries in the UK and would hopefully What is it? A type of The Institute of Cancer important details. The But because IMRT is become the first step in a screening programme When combined with their life expectancy calculations, radiotherapy called Research (ICR) last year. survival rates on the trial proven to be safe, it is for prostate cancer. the researchers found that even their most basic risk intensity-modulated Men were given IMRT to are in fact about the same already being used to treat assessment model would have allowed a large number radiation therapy (IMRT) the lymph nodes of the as what you’d expect pelvic lymph nodes at The tool needs to give a clear idea of whether or not a of men on the trial to avoid having an unnecessary that shapes radiation pelvis to help stop their with current treatments some UK cancer centres. man should be referred for further testing. This would biopsy. And just as importantly, this didn’t reduce the beams to tumours. prostate cancer spreading for advanced prostate reduce the number of men who do not have cancer number of aggressive cancers detected. The next further. Giving standard cancer. Also, the results What’s the expert’s Why is it different from verdict? Dr Matthew being referred for an unnecessary biopsy, without step is to turn these models into a practical tool, radiotherapy in this area are only taken from missing those men with aggressive disease who need regular radiotherapy? is usually considered non-randomised phase Hobbs, Prostate Cancer and then refine and test them with a group of GPs. urgent treatment. The tool will also be combined with a The big benefit is that it too risky to give in high one and two trials. That UK’s Deputy Director We’ll then need to test the final model in a large-scale life expectancy calculation, which will take into account can be highly targeted to enough doses to be means researchers have of Research, says: “It’s clinical trial based other, more serious health problems in cases where the tumour, sparing non- effective. But the trial looked primarily at the hugely important that within the UK prostate cancer tests or treatments could do more cancerous tissues nearby. found this was safe using safety of IMRT, and a bit researchers continue to primary care This should mean higher IMRT and that 87 per cent at the side effects and look for new techniques harm than good. setting to doses of radiation can be that drive up the benefit of the men were still alive how well it works. So far, the research team has analysed data collected see how well given without dramatically from radiotherapy while five years after treatment, from a large-scale European prostate cancer screening it performs in increasing side effects, say with side effects that were When will we know minimising side effects. a ‘real world’ in the bladder and bowel. conclusively whether But this trial’s findings trial and come up with three possible risk prediction considered manageable. models – all based on a man’s PSA test plus other NHS-based IMRT is any good? In need testing in larger, health system. Does it work? So the journalists were around two years’ time, randomised trials before risk-based characteristics. The first model was the Newspapers reported on right to call it ‘a miracle when it has been proven men can know definitively ‘game-changing’ results cure’ then? Unfortunately to perform well in several if this new technique is If you’d like to comment on this or other news stories, go to prostatecanceruk.org/news from trials of IMRT by they missed out some different clinical trials. right for them.” and join the conversation

4 Insights | Winter/Spring 2018 Insights | Winter/Spring 2018 5 make to give a more intense treatment early on, before the disease becomes resistant to hormone therapy.

That’s why we’re so excited about the potential of the first wave of research in our precision medicine We’re over the moon to programme. It combines both these two approaches: giving targeted treatments, but before hormone be able to fund this research Our precision resistance sets in. And it will finally bring prostate cancer treatment in line with other cancers like breast and are confident that the cancer (which already uses a precision medicine approach to treatment), and lung and colon cancer results will fundamentally (where similar trials have been running for several change the way that plan of attack years already). advanced prostate cancer Cyclical research that will is treated in the UK. Finding targeted treatments that can tackle a man’s individual prostate cancer at a molecular level is a key Dr Iain Frame, Prostate Cancer UK part of our mission to stop the disease from being a killer. That’s why we recently announced our biggest grow and change NHS practice and most ambitious research programme, which could finally make precision medicine a reality and propel What’s special about this research, though, is that treatments will be so marked that it will prompt a swift prostate cancer treatment into the modern era. Dr Sophie Lutter explains how it will work and meets a family it’s more than just a regular clinical trial. It’s clinical change in hospitals’ clinical practice as each trial arm with a very personal reason for backing its success. and laboratory research teams working side-by-side so reports. So eventually, thousands of men across the UK that the benefits of their work get to men in the shortest being regularly treated for prostate cancer on the NHS ‘Without minute neatness of execution, the sublime possible time. So the researchers will take learnings from could well benefit directly from this research. cannot exist! Grandeur of ideas is founded on precision Using targeted treatments the lab straight into clinical trials, and results from the of ideas.’ When William Blake wrote this nearly 200 clinical trials will go straight back into the lab for further “We’re over the moon to be able to fund this research years ago, the visionary author almost certainly wasn’t before hormone-resistance investigation. And then the whole cycle starts again. and are confident that the results will fundamentally talking about prostate cancer research. And yet his This isn’t the first time that such an approach has change the way that advanced prostate cancer is words are not only timeless, but completely relevant to been taken in prostate cancer. You’ve probably heard To kick off the process, one team of researchers will treated in the UK,” says Prostate Cancer UK’s director our work today. before about the successful trial of the ovarian cancer examine prostate cancer samples they’ve collected to of research, Dr Iain Frame. “This consortium of drug, olaparib, to treat men whose prostate cancer identify potential, new genetic drivers of the disease and researchers – whose expertise ranges from molecular Towards the end of last year, we announced the is resistant to hormone therapy. This work, led by the drugs that might combat them. Then a different analysis to clinical statistics – have come up with a launch of the Prostate Cancer UK Precision Medicine Professor Johann de Bono at the Institute of Cancer research team will design preclinical studies to test how superbly elegant, but complex research proposal that Programme, which is supported by the Movember Research, demonstrated that doctors could select men effective these combinations of genetic biomarkers and brings laboratory science and clinical research together Foundation and the Distinguished Gentlemen’s Ride. who have a mutation in one of the genes responsible treatments actually are in the lab. If these discoveries are within the framework of an existing clinical trial.” This million-pound-plus research programme truly for repairing damaged DNA and then specifically target confirmed, they’ll then be taken out of the lab and tested in embodies Blake’s sentiment: to achieve our grand idea their genetically different cancer using drugs known clinical trials as a new arm of the research – so it’s constantly The scientists involved are based all over the UK and will of drastically reducing the number of men dying from as PARP inhibitors, such as olaparib. As a result, the growing and evolving with each positive new discovery. be doing several different avenues of investigation at the prostate cancer, we need to get precise in our ideas men on the trial lived significantly longer with what is same time. Within three years, all three project strands about how to treat it. otherwise a lethal disease. The researchers hope that the initial discovery phase will be set up and running, and they’ll continue to deliver will allow them to genetically map the prostate cancer of for many years after that. As additional discoveries are This means understanding – at a molecular level – You’ll also have heard us talk about the importance of all the men recruited for any trials, so the vast majority made, validated and tested further down the line, results what drives each man’s disease, and matching that to giving treatments at the right time. The success of early can then be selected for a targeted treatment based on that have a big impact on the lives of men with prostate treatments that will stop their cancer in its tracks. This is abiraterone and early docetaxel on the STAMPEDE their cancer’s molecular makeup. They anticipate that cancer will continue to be released and the goal of exactly what our precision programme aims to achieve. trial highlighted time and again what a difference it can the improvement in men’s survival with these targeted precision medicine brought that bit closer. How our Precision Medicine Programme Giving hope to families projects work together... like Hayley’s It’s this kind of personalised approach to treatment that Hayley Yarnley wishes had been in place when her PROJECT 1: PROJECT 2: PROJECT 3: late dad, Bernie, was diagnosed with terminal prostate Identifying disease PARP inhibitors trial Immunotherapy trial cancer at 59. drivers and possible “Every man’s different, and every cancer’s different,” targeted treatments she says. “My dad used to sit next to a man of the 1 2 3 same age in the hospital. He was the same build Start examining existing cancer and had the same type of cancer, but they’d react October samples to identify disease completely differently to the treatments. Despite this, 2017 drivers for targeted treatment. they both had to follow the same pathway.”

Begin finding ways to identify men with DNA The retired police chief inspector underwent December damage-repair mutations. These men can then be chemotherapy and survived long enough to see 2017 treated with drugs called PARP inhibitors, which only Hayley’s two children born, before dying six years kill cancer cells that have these mutations. later, in December 2016. March The first patient who has hormone-sensitive advanced “My dad would be over the moon about the new prostate cancer driven by a DNA-damage repair research that Prostate Cancer UK are funding,” says 2018 mutation will join the PARP inhibitors trial. Hayley. “He’d have loved to be part of the trials and First data released on genetic The first patient joins a new trial arm to test a to have that opportunity. But he’d be relieved, I think, June changes driving disease in men type of cancer immunotherapy in men with for the men out there who are sons, dads, grandads. 2018 with hormone-sensitive prostate We’re committed to achieving long-term hormone-sensitive prostate cancer. At this stage, To know that there’s an opportunity – a chance. cancer, and how these affect men are not selected based on a molecular profile. And that’s what you need when you’re going up the outcome of the disease. disease control for the majority of men against prostate cancer. You need hope. The researchers can now look and – for an increasing proportion – The researchers will start to examine the cancer for treatments – that either DNA of the patients enrolled on the immunotherapy “As for me, I’m grateful to the researchers and already exist for other diseases complete cure from their disease. trial, to look for genetic changes that predict who everyone who donates to Prostate Cancer UK. or are totally new – to target Dr Gerhardt Attard, Project 1 researcher the treatment will work best for. It means so much for daughters like me, who’ve these mutations. been with their dads through this journey. It’s a hard, old path. But to know that there are thousands of A provisional analysis will confirm how well selecting men – and thousands of families – who’ll be directly June patients for PARP inhibitor treatment based on the affected by this research is an incredible feeling.” 2020 presence of a DNA damage-repair mutation predicts that the treatment will work. Read more about Hayley’s dad on p19. Researchers complete the first part of the December immunotherapy trial, then they can identify 2020 the disease drivers that predict how well immunotherapy treatment will work.

All patients will have been recruited to the PARP March inhibitor trial. 2023

Preclinical studies begin to test Results of the PARP inhibitor trial will be reported. Precision trial starts, testing immunotherapy for Beyond targeted treatment of newly This is likely to result in a swift change in how men who have hormone-sensitive advanced March identified disease drivers. hospitals treat prostate cancer. prostate cancer and whose molecular profile predicts they’ll benefit. 2023 Clinical trials start examining (subject to disease driver-and-treatment pairs additional that have been proven to work for funding) men with hormone-resistant prostate cancer, and for men whose cancer is still sensitive to hormone therapy.

8 Insights | Winter/Spring 2018 Insights | Winter/Spring 2018 9 The trials and rewards of a stubborn scientist Over the last 16 years, and thanks in large part to now, and this funding has given me the opportunity your donations, Dr Valentine Macaulay has been to do that. Finally, all the pieces are in place: the on a fascinating journey of discovery. What started research question and the resources needed to run in 2002 as an interest in how proteins – called insulin- the trial. I can’t express strongly enough my gratitude like growth factors (IGFs) – make cancer grow and for the funding I’ve had from Prostate Cancer UK over My main spread should soon become a full-blown clinical the years, and I’m really grateful to all your fundraisers trial of a new prostate cancer treatment, funded by and donors for making it possible. ambition one of our recent Research Innovation Awards. How long do you think it will be before an We talked to the University of Oxford scientist IGF-blocking drug is a routine treatment is for my and oncologist about what it takes to commit to option for men with prostate cancer? research over so many years, and when she As with all new cancer drugs, it’s standard practice research to thinks a drug that blocks IGFs might become a to test them first in patients with metastatic disease. routine treatment for men with prostate cancer. And we’re are already helping to test IGF blocker make some drugs in men with metastatic prostate cancer. After all these years of studying the actions of just The results will determine whether there are further one protein, what’s motivated you to keep going? trials, which could involve testing the IGF blocker with difference You do need quite a deeply ingrained sense of a hormone treatment, and will take three-to-four years determination to be a scientist – and be quite stubborn to complete. to men with too! There have definitely been times when I would deliberately try not to get important results on a Friday My Research Innovation Award may provide prostate afternoon, in case it was bad news and the feeling of evidence to justify a larger clinical trial, but because it failure would last all weekend. But if I saved the results concentrates on localised disease, a trial like that would until Monday, I’d already have come up with a plan B take much longer to see results through to clear clinical cancer. and be ready to work on it straight away if necessary! outcome. There may also be potential for this treatment to be tested either before or after surgery or radiotherapy I’m very lucky in that I just love my job. It’s a huge for high-risk men, to try to prevent cancer recurrence. privilege to look after patients [as an oncologist]. I don’t do it full time, but I feel fortunate to have the What’s your biggest ambition now? opportunity to get to meet my patients and their families My main ambition is for my research to make some – and to witness the love and support that gets them difference to men with prostate cancer, and I just hope I through such difficult times. But I also find the biology can deliver that. It’s quite nerve-wracking really: I’ve been fascinating, so being able to spend time both in the lab wanting to do a trial based on my research for a long and with my patients means that I’ve maintained my time, and now I really do hope it will make a difference. fascination and enthusiasm for both aspects of my work. I especially enjoy sparking enthusiasm in the young researchers joining my lab as they start to settle in, and they suddenly get that light of discovery in their eye. It’s a wonderful feeling! What excites you most about your new Research Innovation Award? I’ve been trying to conduct an investigator-led clinical To find out more about Dr Macaulay’s research and the recipients of our trial based on my research for the last five or six years other Research Innovation Awards, go to prostatecanceruk.org/research

10 Insights | Winter/Spring 2018 11 The black golfers saving men’s lives

For the last six years, the trying to work out if we “We’ve also introduced African Caribbean Golf could actually hit this ball a betting sweep where 10 years of Funding Association has been or not. And we all hit shots a proportion goes to challenging taboos and that we would probably the charity.” mo’ heroics the Future raising awareness of a never replicate ever again! Forget the Movember’s annual legacy events disease that hits one-in- They went straight down It all helps to raise month of facial hair four black men. We meet the middle. We walked awareness among black stigma of what and fundraising saw We held Funding the four of its members and past and gave a wave to men, who are often goes on for the thousands of people Future events for our find out how it all began. the twitching curtains.” reluctant to discuss their taking part across the supporters in York, health yet are twice as testing and UK last November. It was Nottingham, Norwich and It’s fair to say that before The ACGA’s membership likely as other men to get our tenth year of working London last year, with Tiger Woods burst onto has waxed and waned prostate cancer, with one- forget being with the Movember our researchers the scene in the late from a peak of 90 since in-four getting the disease. Foundation, which invests sharing first-hand the 1990s, black men weren’t it was officially founded in our research initiatives incredible work they “In African and Caribbean macho. If you prominent in golf. And in 1992, and at one and services for men. do with your money. societies, men don’t those who were playing time they counted eight want to live, This time, our network It’s a great opportunity really talk about it,” says were often ignored by professionals among of MoBros and MoSistas to find out more about Franklyn, who is being the media. them. They’ve played go and get managed leaving a legacy to us monitored for an enlarged other golf societies all to raise and we’re planning to “I think the only black prostate and whose father over the UK and Ireland, tested and more than hold more events this player you had was died from prostate cancer. touring some of the Tyrone Carter £10k – year. If you’re interested Calvin Peete,” says “You hear the old thing, keep getting finest courses. and Jacqui thank you in knowing more, Franklyn Skinner of the ‘no one is sticking a finger Harbour. yourself tested. all of you! please email legacy@ US golfer who played Six years ago, the ACGA’s up my backside’, and all prostatecanceruk.org in the 1980s. “But you then-captain, Jacqui that. But it’s a blood test Tony Johnson would never see them Harbour, decided to make The decision lifted the lid members and has come you get.” play, even though they Prostate Cancer UK their on a disease that turned up with some great ways might be doing well in the charity of the year. out to have affected to raise money for us as Tony is even more and forget being macho. Fellowship awards target tournament. That’s how many of their members they play. forthright with his advice: If you want to live, go new prostate cancer drugs things were at the time.” and prompted Jacqui’s “Forget the stigma of what and get tested and keep own partner and fellow “We have something goes on for the testing getting yourself tested.” Thanks to your donations, It was during this period member, Tyrone Carter, called the ‘blobometer’, we’re delighted to that the African Caribbean to get tested. created and run by our announce more than Golf Association (ACGA) In African member, Steve Garner,” £600k in Travelling Prize came about, with four “I discovered I had says Roger Goddard, Fellowship awards to two black friends – including and Caribbean prostate cancer in August current of ACGA, ambitious researchers, Franklyn and Tony 2015,” says Tyrone. whose father and uncle Dr Susan Heavey and Johnson – playing four-ball societies, men “I started my treatment have died from prostate Dr Chris Armstrong at a Middlesex golf club. six months later and cancer. “Every time (pictured right). They’re don’t really finished hormone therapy we scratch a hole or investigating exciting “It was the funniest thing in October. Hopefully now don’t score a point, new drug treatments for ever,” says Tony of the talk about I’ll only have to go for six we contribute a pound prostate cancer and will hush that descended monthly check-ups.” towards the blob count travel to US laboratories as they stood at the first prostate and that money goes The African Caribbean Golf Association. as part of their studies. tee by the clubhouse. The association continues directly to Prostate For more about their work, “You could see five or six cancer. to hand out our prostate Cancer UK. For ideas about how you can raise money and go to prostatecanceruk. people at the windows, Franklyn Skinner information to all their awareness through golf, go to prostatecanceruk.org/golf org/fellowships

12 Insights | Winter/Spring 2018 Insights | Winter/Spring 2018 13

PROSTATE CANCER AND ME Michael Holding

Nicknamed the How did you come to doctor in the US. At that ‘Whispering Death’ talk publicly about point, he said he could be for his famously silent your connection with treated. But things didn’t run-up to the crease, prostate cancer? go well with how it all Michael Holding was went. Such is life. one of ’s fastest I was contacted by Men can be ever bowlers and still Gladstone Small about How much did you holds the best an event for Prostate know about the lax about their figures in a Test match Cancer UK, which he disease before then? asked me to come and health and for a West Indian player. Prostate cancer was Now 63 and a fixture support, and I said yes, something that was believe nothing (Left to right) Michael, our ambassador in television and radio definitely. I have a lot always spoken about in Errol McKellar, cricketer Gladstone Small commentary boxes of history with prostate my family because of my will happen and boxing commentator Ronald McIntosh around the world, cancer among my friends and family, so I thought it dad’s diagnosis. And a lot at our special event. he went public with of my friends, including to them. It’s a his family history of was a good thing to come and support. my business partner prostate cancer for in , have had macho thing. Did you talk about You’re joining many the first time at a Gladstone’s father died prostate cancer over the prostate cancer in the other top sports special event for from prostate cancer. years. They are thankfully When you hear that dressing room when personalities by us last year. Did you know about well again after having one-in-four black men you were a player? wearing our ‘Man of He tells us how each other’s family treatment – mostly in will get the disease, how Men’ pin-badge. How No, we didn’t. But I try to his brother’s histories of the Miami, where I live now. does it make you feel? important is it that sport recent death disease beforehand? So it’s always been a topic tell my friends and people helps drive awareness spurred him that’s been discussed It’s staggering. And to be I come across on a regular of the disease? to speak out No, we never discussed it. among my family and honest, it’s something I’ve basis now how important and why he The first I heard about his friends for perhaps two only heard about recently. it is to get to a doctor and Sport has a lot of fans, hopes it will father was that evening. or three decades. I knew prostate cancer get themselves checked. whether it’s football, encourage My dad was treated for it was prevalent in black cricket, tennis or golf. Why do you think so more men to in the later stages of his men but I didn’t know the And a lot of people follow many men ignore get tested. life. And I lost my older true statistic. sport live, on television brother, Ralph, to prostate their risk? and on social media. Are you conscious of cancer in January 2016 Men can be lax about So if sports people get your increased risk? – just 18 months after his their health and believe involved, with all their fans diagnosis. He was only If your father and brother nothing will happen to and Twitter followers, that 68 years old. get prostate cancer, I’m them. It’s a macho thing, will spread the word and ultimately save lives. That must have been a aware there is a greater for sure. Although a lot of tough time for you and risk that I might get it men don’t like going to your family. too. So I get tested every the doctor either. Some November, before I don’t like the [digital rectal] Yes. We’ve always been go to South Africa, examination – they have a very close family. To be where I commentate a phobia about it. But Michael in action for honest, I didn’t think the on the cricket during it’s simple and can save the West Indies in 1980. disease would take Ralph their summer. your life. because as soon as he was diagnosed, I got in For more information about your risk of prostate cancer, go to prostatecanceruk.org/risk touch with a very good

Insights | Winter/Spring 2018 15 THE MANUAL Your questions answered about what’s next after hormone therapy

Hormone therapy is And your doctor or nurse may also ask you about What is the best order to have treatments in? Here’s what two of our supporters have told us a standard treatment any new symptoms you may have developed, such about their experiences: for men diagnosed as urinary problems or bone pain. At this point you Although it’s something lots of men want to know, with prostate cancer may also have scans, such as a magnetic resonance there’s currently no best treatment or best order that’s spread outside imaging (MRI) scan, a computerised tomography (CT) to have them in. And you might have another hormone of the prostate. scan or a bone scan to see how the cancer is growing therapy drug, like abiraterone or enzalutamide, either It controls rather and which treatments might help. before or after trying chemotherapy. However, if you’ve than cures, so already had enzalutamide, abiraterone probably Clinical trials gave us hope we’re often won’t be an option for you. And if you’ve already had Are there any treatment options after my first abiraterone, enzalutamide probably won’t either. This is asked what’s hormone therapy? and my dad felt that he was next if it stops because early research suggests that each drug may working so Yes, quite a few, including anti-androgens, only have a small effect in men who have already had doing some good too. well. Our Specialist enzalutamide, abiraterone, chemotherapy, steroids the other. However, if you get severe side effects from Nurse, Patricia, looks and radium-223 – as well as treatments to help manage either abiraterone or enzalutamide, you may be able to at the options. symptoms (palliative treatments). And even though try the other one. your prostate cancer isn’t responding to one type of

Why isn’t hormone therapy working as well hormone therapy, it may respond well to other types How will I know if my treatment is working? for me as it was? or a combination of treatments. I keep a record of questions During and after your treatment, your doctor The treatment works in two ways: either by The treatments you can have will depend on lots of or nurse will check how well your treatment is stopping your body from making the hormone things, and you (with your doctor) will need to consider and answers for each working – usually through regular PSA tests or other testosterone, or by stopping testosterone from reaching things like where your cancer has spread to, if you have tests such as MRI or CT scans – along with how appointment, so I can review the prostate cancer cells. Prostate cancer cells usually any symptoms and your general health. Your doctor you’re feeling. One aim of your treatment is to help need testosterone to grow, so taking away or blocking will also talk to you about the possible side effects of manage any symptoms from your cancer, so that your how I’ve been progressing it usually causes the cancer to shrink wherever it is in each treatment, how you feel about them, and how daily life is as good as possible. But treatments can the body. Hormone therapy won’t cure your prostate treatments will fit in with your daily life. You’ll probably and work out what to cause side effects, so let your doctor or nurse know cancer but it can keep it under control – often for continue with your first type of hormone therapy, about any changes. several years – before more treatment is needed. too, because it will still help to keep the amount of ask next. testosterone in your body low and some cancer cells However, over time, the behaviour of your cancer may keep responding to this. cells may change and your cancer could start to grow Can I get involved in a clinical trial to try a again. At this point, your doctor or nurse may refer to What do we mean by your new treatment? your cancer as hormone refractory, hormone resistant, Yes, you might be able to go on a clinical trial, androgen independent or castrate resistant. This ‘first’ hormone therapy? ? which aims to find new and improved ways of can happen even though the hormone therapy is still The first hormone therapy you have is sometimes treating and managing illnesses. There are clinical trials lowering your testosterone levels. called ‘first-line’ hormone therapy. It could be: looking at new treatments and ones looking at new • Injections or implants to stop your body making ways of using existing treatments, and the best order I’m worried my cancer will start to grow and testosterone, such as goserelin (Zoladex or Novgos), to have treatments in. If you decide to take part in a I won’t know it’s happening. How will my leuprorelin acetate (Prostap or Lutrate), triptorelin clinical trial, you may be able to have a newer doctor check? (Decapeptyl or Gonapeptyl Depot) and buserelin treatment that isn’t yet widely available. To find out acetate (Suprefact) or degarelix (Firmagon). about taking part in a clinical trial, ask your doctor We often get asked this question by men worried or nurse, or speak to our Specialist Nurses. the cancer will ‘run away’ before they can have • Tablets to block testosterone from getting to the treatment. But while you’re having hormone therapy, you cancer cells such as bicalutamide (Casodex). should have regular PSA (prostate specific antigen) blood • Surgery to remove the testicles or the parts of tests to check how well the hormone therapy is working. the testicles that make testosterone. This is Find more help for living with prostate cancer at A continuous rise in your PSA level may be the first sign called an orchidectomy. that the hormone therapy is no longer working so well. prostatecanceruk.org/living

16 Insights | Winter/Spring 2018 17 In MARCHING FOR MEN the SPOTLIGHT THANK Nick Butter Ultra-marathon runner the toughest footrace on from Bristol Nick Butter is aiming to earth,” says Nick. “When go further than any man he told me he had been YOU WHERE YOU LIVE has gone before, running diagnosed with terminal a marathon in every prostate cancer, I knew I Inspiration and tips on organising your own March for Men country in the world – wanted to do something. £2,500 that’s an astonishing 196 He is a remarkable man To 76-year-old Enid Vincent, in total. The 28-year-old with endless positivity, who braved a wingwalk endurance athlete set off so this trip is for him and for us at on his record-breaking, to hopefully stop future Chiltern Park 550-day challenge over generations dying from Aerodrome, 5,000+ miles in January, prostate cancer.” South Stoke. hoping to raise £250,000 for Prostate Cancer UK. Follow Nick’s progress and donate at nickbutter.com His inspiration came after 212 miles meeting our ambassador To Joseph Cassar and and father-of-three Kevin his team, for running all Webber last year. “We met 212 miles of the Southern during the Marathon des Upland Way across Sables – also known as Scotland and raising an astonishing £4,809. Belfast resident Jackie she’s already committed the march route? And Top tip: posters work and the outdoors. It was I really think Lydia helped Dickson was so incensed to doing the event again don’t forget to tell us as best on the back of in his blood. He swam him through those last years. that her husband had next year. “We have well – we can help too! toilet doors (but always two miles a day until the to travel all the way raised an astounding ask permission first!). “Dad was heartbroken 3. Use our Poster Maker cancer treatment made £1,770 to Cambridge for his amount of money, which about his diagnosis but Make your own 4. Get on social media him too tired. To Warren Malcolm, who prostate cancer removal will mean so much to TOP he never googled how organised an angling operation, she decided the charity and their personalised March for Create an event on “When my son Rory was long he might be around tournament in Oban, to organise a March for much-needed research.” Men posters and then Facebook and invite born, Dad was about to for. He did, though, check raising £885, Men in her home city to share them online and your friends to it, then DAD start chemotherapy. At the the Prostate Cancer UK which was So how can you make in your local community. share photos and highlight the issue. hospital, I handed him his website and read the your March for Men as You can either ask details of your plans, matched by first grandchild, knowing his papers, and he just knew With only three months of successful as Jackie’s? people for sponsorship tagging people in so his employer, time with us was limited, and that the breakthroughs preparation, Jackie and or to join you raising it pops up in their Arnold Clark. it was a huge moment. Dad were on the way. husband Billy (pictured 1. Use JustGiving.com money on the march. notifications. Make sure didn’t cry, though. He had right) led more than 160 This is the best way you post regularly with the biggest beaming smile “‘They’re on to something people on a 4km walk to get donations and updates and details under his moustache as he now, Hayley! They’re around Stormont Estate encourage others on about the event. £540 held Rory for the first time. almost there!’ he’d say. To 13-year-old super-cyclist last September. It was the march to get online Hayley Yarnley’s dad, ‘There’ll be a cure one Erin Brady, who took on covered by newspapers sponsorship too. It’s 5. Use a local landmark Bernie, died from “Two years later, Lydia day. It won’t happen in my the Cambrian Coast and radio across really easy to share on for the start/finish advanced prostate came along. By that lifetime, but it’s for Rory.’ Sportive for us in Northern Ireland and social media and you Choosing somewhere cancer in December point, it was obvious what That’s what you need September. raised over £5,000. can set up a team page of local importance or 2016, just a few days direction Dad’s prostate when you’re going up Several politicians also to see how well you’re a well-known beauty shy of his 60th birthday. cancer was taking against came along to learn more all doing. spot might encourage She describes how the him, and she spent prostate about the issues facing more people to join, 2. Ask your friends and makes for great birth of his grandchildren the first two years cancer. £470 men with the disease. for help pictures on the kept him going during of her life on his Hope.” To Corinthian-Casuals FC lap, kissing and “It was a very emotional Everyone has contacts march itself! his treatment. for turning their club’s cuddling him, telling day – not just for myself and networking can bar into a Men “My dad was a force of him off and giving and my family, but also be so useful when Order our March for Men United Arms on nature! He loved adventure him toys. for those who have lost organising an event. pack with everything Non-League loved ones,” says Jackie, Could someone share you need to organise a Day and who was so inspired by your event at their spectacular walk. Go to Read Hayley’s full story at raising this people’s support that office, volunteer on the prostatecanceruk.org/ prostatecanceruk.org/hayley princely sum. day or help you create walking

18 Insights | Winter/Spring 2018 Insights | Winter/Spring 2018 19

GET INVOLVED Five ways to get your mates together and raise money for us as Men United

World’s Biggest Pub Quiz Stirling Scottish E V EN TS 4-8 March Marathon 29 April CALENDAR MARCH-JULY 2018 Be part of PubAid’s or find details of how to Starting near the imposing place already or not, 26-27 Edinburgh Tough Mudder April-Sept World’s Biggest Pub Quiz get your local on board Stirling Castle, you’ll run run for us and we’ll MARCH Marathon Festival The ultimate obstacle course and help us stop prostate or host your own quiz. through incredible scenery help you train, fundraise Run for us in the 10k, 4 Vitality Bath race over 10-12 miles (or a cancer being a killer. and past world-famous and provide a technical half or full marathon, and Half Marathon shorter route of five miles) that Hundreds of pubs and landmarks on a brand- running top with iron-on we’ll provide a running Take on two laps of this will test your stamina, resilience venues across the UK will new route, finishing in letters to wear on the top, training advice and traffic-free course through and teamworking abilities. be hosting quizzes to raise the historic city’s streets. day. Book your place the World Heritage City. fundraising pack to get you on your way. money for us and other No loops, no underpasses or find out more at Fast and flat, it’s perfect Get a team together and great causes. You can find and no shuttle buses to prostatecanceruk.org/ for first-timers and help beat prostate cancer, your nearest participating worry about this year! stirlingmarathon seasoned runners. JUNE as well as the course, on a pub at pubaid.com/quiz Whether you’ve got a choice of weekend events 1-3 Football to in Henley-on-Thames, APRIL Amsterdam Grantham, Drumlanrig Castle, Join hundreds of rival 15 Brighton Marathon Hertfordshire and Skipton. March for Men The seaside city’s annual football fans uniting to Marathon Weekend cycle 145 miles over two March for Men 22 Football March June-July is a carnival of days from the UK to Ajax’s 10 Manchester for Men Amsterdam ArenA – and Almost 3,000 of you raised suit everyone. For a bigger running, with a terrific and Liverpool Join thousands of help us top the £600k an incredible £1 million at challenge, there’s our new atmosphere attracting 16 London fans for one of four raised last year. last year’s March for Men Football March for Men in thousands of people. 17 Bristol and Glasgow marathon-length walks events. This year, there July, with marathon-length 23 Leeds from football clubs across 29 Kiltwalk Glasgow 3 Kiltwalk Aberdeen are seven local marches walks from clubs across 30 Nottingham the South East, finishing Stride, stroll or wander The Granite City’s Kiltwalk Sign up for your nearest at the home of football: during June in London, the South East converging along a choice of 6, 13 also features the Mighty Manchester, Nottingham, on Wembley Stadium. March for Men event Wembley Stadium. and 26-mile routes around Stride, Big Stroll and Wee and join hundreds of Leeds, Glasgow, Liverpool Find out more and Scotland’s largest city, with Wander 6, 13 and 26-mile 29 Prudential and Bristol. All will be in secure your place at friends and families all money raised matched routes, so everyone can showing their support. RideLondon-Surrey local parks and include marchformen.org by an additional 40 per join in and get 40 per cent Choose from 46 and a choice of distances to Entertainment and cent by the organisers. match-funding on every refreshments on the day. 100-mile routes, retracing penny they raise for us the famous 2012 from the organisers. Olympic Road Race MAY JULY from Stratford stadium Prostate Cancer UK Darts 16 Edinburgh Night Ride 1 Yorkshire Three Peaks/ 14 Walk the Night to Box Hill and back to Cycle past the Scottish Classic Three Peaks Take a night-time hike the finishing line along Golf Championship capital’s iconic landmarks All year round Summit the rooftops around London’s most the Mall. Book your place lit up against the night Whether you throw at home that hits the bullseye with of Yorkshire, Scotland, famous landmarks in this before they’re gone! Before 1 September sky, on this thrilling 50-mile or for your local team – or your friends and family Wales and England. new fundraiser for breast Do you have what it takes Haggs Castle or Lymm. ride with a nocturnal you’re just an avid fan using our darts fundraising Includes a leader, all travel and prostate cancer. to be crowned the best Former European Open twist! Raise more of the sport – we’ve got pack. Order yours at and accommodation. Choose from half and player in the North, the Champion Andrew Murray than £200 and loads of fun, money-raising prostatecanceruk.org/ Pick any weekend until 31 full-marathon distances South or Scotland? Host a will be offering a free golf get a free ideas to turn your passion darts October and sign up solo and commit to raising £199. golf day to raise funds for clinic for every finalist on the for darts into vital funds or as a group. cycling jersey. us and the winning player day too. Find out more at for our research. From an will earn a place at an area prostatecanceruk.org/golf all-day darts marathon Check out full details and sign up to all these events – plus many more – final at the world-class or call 020 3310 7235. to sponsored exhibition at prostatecanceruk.org/events courses of Sandy Lodge, matches, organise an event

20 Insights | Winter/Spring 2018 Insights | Winter/Spring 2018 21 Other useful Online support groups Our organisations promise no man has Bladder and Bowel Maggie’s Centres to cope alone Foundation www.maggiescentres.org Many men affected by prostate cancer tell us www.bladderandbowel 0300 123 1801 they benefit hugely from talking to others with services foundation.org Provide information and similar experiences. There are independent 0800 031 5412 support to anyone affected groups across the UK where men can meet and Information and support by cancer. Their website support each other in person, as well as our own Specialist Nurses Information on Prostate cancer The blue men on this for all types of bladder and holds a list of centres one-to-one telephone support service and online 0800 074 8383 prostate cancer support groups map represent the bowel problems. across the UK and has community (details of all of these are on the locations of support an online support group. opposite page). (Mon to Fri 9am-6pm, Meet and talk to other 0800 074 8383 groups who have British Association Wed 10am-8pm) people affected by We provide free information asked to be listed for Counselling & NHS Choices But what if there isn’t a support group near you or you Our Specialist Nurses prostate cancer who on prostate cancer and on our website. Find Psychotherapy www.nhs.uk can’t find men who share your particular experiences have the time to listen and understand what you’re Provides information to prostate disease. Order a group near you: www.itsgoodtotalk.org.uk of prostate cancer? We’ve been looking at ways to answer your questions going through. There are 01455 883 300 support you in making or download copies from prostatecanceruk.org/ solve this by trialling some online support groups, on anything to do with more than 120 independent Provides information about health decisions, including the publications section supportgroups where men can join discussions with others via their groups across the UK. prostate cancer and of our website or call our counselling and details of an A-Z of treatments webcam or audio device so they don’t have to travel prostate disease. Specialist Nurses for help Please note that some therapists in your area. and conditions, and to a set location to take part. groups run meetings in information on NHS health choosing the publications Live chat Cancer Black Care more locations than the services in your local area. Our first online group started in October for gay One-to-one you need. Our Specialist Nurses are cancerblackcare.org.uk one listed. and bisexual men with prostate cancer, which met telephone support available online to answer 020 8961 4151 Penny Brohn UK monthly. We worked in conjunction with Opening your questions and help Provides information and www.pennybrohn.org.uk Doors London, who helped facilitate the discussions. 0800 074 8383 you find the information support to people from 0303 3000 118 Talk things over with you need. black and minority ethnic Offers support using “I thought it was a great success,” someone who’s been there. communities who are complementary therapies says Martin Wells (pictured left), We match callers with The peace of affected by cancer. and self-help techniques. one of the men who took part in trained volunteers who’ve mind I have as a Working hand-in-hand the trial. “Everyone who participated had a similar experience. Cancer Research UK with medical treatment. got involved with the conversation result of the call cancerresearchuk.org and was happy to share their 0808 800 4040 Relate experiences of prostate cancer.” Online community is phenomenal. Provides information www.relate.org.uk Join the community online I feel like I have about living with cancer. 0300 100 1234 Martin had previously set up his own support group and talk to others who know Relationship counselling for gay men after he couldn’t find the right services in what you’re going through. a future now. Complementary and sex therapy for his local area. “Talking to other men who could speak and Natural You can ask questions, Specialist Nurses caller individuals and couples. to me on my terms felt incredible,” he says. “That’s post information and share Healthcare Council why Prostate Cancer UK’s new online support group your ups and downs. www.cnhc.org.uk Sexual Advice is such a great opportunity for other men who are community. Regional services 020 3668 0406 Association gay, bisexual or MSM [men who have sex with men] Details of complementary www.sda.uk.net prostatecanceruk.org To find out what local to come together and discuss any topics on prostate therapy practitioners who Website and app with support and services are cancer without judgement, wherever they live.” meet national standards of advice and information available in your area go Fatigue support competence and practice. about erectile dysfunction. We’ll be evaluating this trial shortly, but are also 0800 074 8383 to prostatecanceruk.org/ planning trials of online meetings for men on active find-local-support Macmillan Tackle Prostate Cancer surveillance and partners of men with prostate cancer. If you have prostate cancer Cancer Support www.tackleprostate.org and you’re struggling with www.macmillan.org.uk 0800 035 5302 Find out more about fatigue, our Fatigue support 0808 808 0000 The National Federation this and other support service is designed to (Mon-Fri, 9am-8pm) of Prostate Cancer group options at help you manage your Provides practical, financial Support Groups, working prostatecanceruk.org/ tiredness so you can do and emotional support for closely with us to provide supportgroups the things you want to do. people with cancer, their local support to patients family and friends. and families.

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

22 Insights | Winter/Spring 2018 Insights | Winter/Spring 2018 23 Ready, steady, SHOP!

Our online shop is now live: shop.prostatecanceruk.org

4896 Prostate Cancer UK is a registered charity in England and Wales (1005541) and in Scotland (SC039332). Registered company number 02653887. 24 Insights | Winter/Spring 2018