cancer news and views ProIssue 2 | Summer 2013 gress

Complementary therapies Separating fact from fiction

COLIN JACKSON PSA test: past, present and me and future We delve into the history, the controversy and what men think

Progress | Summer 2013 1 INBOX Write to us, email us, Editor’s 3 tweet us note Dear Readers, Prostate cancer news 4 All the latest To those of you who read issue one, welcome back and to any new readers, PSA test: Past, a very warm welcome. present and future 6 Behind the controversy We’re very excited to bring you former Olympic athlete Colin Jackson talking about how prostate

C ONTENTS From doctor to patient: cancer has affected his 8 The PSA test family. We also take a look at complementary therapies and supply the Our news latest prostate news. Father’s Day TV film and 9 an exciting new partnership However, the big focus of this issue is the controversial PSA test. Prostate cancer and me: We look at the facts Colin Jackson behind the test, its history, 10 My family and my risk our view and your views. We also hear from two experts and investigate Prostate cancer and me: the future of testing. Patricia Neeves 11 Partners are affected too Once again, we are hugely grateful to everyone who has helped us by sharing The Manual their stories, experiences Expert Q&A on and opinions. Please 12 complementary therapies continue to do so – we can’t do this without you! Prostate cancer and me: An Olympic torch bearer, Very best wishes, a dog called Gypsy 14 and Adrian Mole

Get involved Football, research 16 and Tea for Victory.

Events calendar What’s on between 17 now and February? Editorial team Nick Wright Our services Ben Roche Find out what we Penny Eaton 18 can do for you Catherine Steele (Editor)

2 Progress | Summer 2013 Inbox Dear Progress Tell us what you think about the magazine. All feedback is welcome: the good, the bad and the downright constructive. In your next newsletter could you please explain He was also interested what a ‘Gleason’ reading in reading your magazine is and how it is arrived at. which was amazing as Thank you. he’s usually very reluctant Dear Progress to read anything that Received the Brian Ovenden, My husband is currently comes through the door 1st issue of Canterbury receiving hormone therapy regarding . for advanced prostate He then signed up to #ProgressMag Gleason grade cancer. When we received walking/jogging a 5km today and it’s If biopsy samples the first issue of Progress after looking through your contain cancer, the in February I read Bruce Events calendar and that’s an excellent pattern made by the Tasker’s “My Experience” inspired him to get more read - full of cancer cells is given a and I felt quite relieved in involved in these charity grade from 1 to 5. a way that someone out runs/walks for Prostate useful advice, This is called the there is experiencing the Cancer UK. Thank you. info and news. Gleason grade. same as my husband. There is some useful Carol Hastie-Davies, Good work! Gleason score information in that article! Cardiff There may be more than one grade of Dear Bob, cancer in the biopsy sample. The grade We are very keen to make of the most common Progress accessible to as Really pattern and the pattern Dear Progress many people as possible. interesting with the highest grade As a new fundraising We have recently trialled are added together volunteer I was sent issue the magazine using magazine. to give the Gleason number one of Progress. glasses provided by the Informative score. The higher the I found it interesting, RNIB, which simulate Gleason score, the informative and well laid- some common visual and easy to more aggressive the out. I wish information like impairments, and found read. It has been cancer and the more that had been available to it performed pretty well, likely it is to spread. me 13 years ago when but we are making some read by several Gleason scores run I was diagnosed with adjustments. The main patients on my from 2 to 10. However, prostate cancer. method we are using to today doctors usually make Progress available in ward. only give a Gleason However there is something larger print is to produce Thank you. grade of 3 or more, so you might like to consider an electronic copy of the your Gleason score will in future. There are around magazine (PDF), available normally be between two million blind and on our website, and an Write to us: 6 and 10. For more partially sighted people in email newsletter. Both of Prostate Cancer UK information see our fact the UK and they will be these can be enlarged as Fourth floor sheet, How prostate unable to read Progress much as the reader wishes. The Counting House cancer is diagnosed. in its present format. Have 53 Tooley Street Visit our website: you considered making it Many thanks for your SE1 2QN prostatecanceruk.org available in Braille, large feedback – we really to order or print or audio?” do appreciate it. download a copy. Bob Pow, Cumbria The Progress Team

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Progress | Summer 2013 3 PROSTATE CANCER NEWS Men not getting the help they need with side effects Health professionals We started the group to Lindon, Head of Policy hear from you to help and people affected by ensure that through our and Campaigns. “Now develop our campaign. prostate cancer have told campaigns we tackle we are looking at what And if you have any us that getting support the issues that matter we can do to ensure suggestions for future with side effects of most to men. all men have access to campaigns, please treatment is one of the appropriate support to contact lizzie.flew@ biggest challenges men “The Policy and cope with incontinence prostatecanceruk.org, face. Specifically, men campaigns forum and erectile dysfunction, or call 020 8222 7651. need more help dealing highlighted the problems if they experience these Any suggestions will be with incontinence and men have with getting side effects.” discussed at the next erection problems. This access to support meeting of the Policy was revealed at the first services for the side If you have had trouble and campaigns forum meeting of our new Policy effects of prostate cancer getting support for these in the autumn. and campaigns forum. treatment,” said Drew problems, we’d like to “John was a surgeon’s surgeon and an inspiration” He appeared in the “In 1991 John was “John was due to become national press, and just a appointed as a Consultant President of BAUS in few weeks ago recorded Urological Surgeon with 2012, but unfortunately fell several films in which he a special interest in ill. He gave a most moving talked positively about his oncology (the study and account of his prostate own diagnosis. treatment of cancer), at cancer diagnosis at the the Royal Hallamshire annual meeting, explaining “John trained at the Hospital in Sheffield. why he was not able to University of Bristol, He provided a lead take up the Presidency. qualifying as a doctor in developing clinical However, he never in 1979. He gained practice and research complained. Typically, he Fellowship of the Royal in prostate cancer, and went out and bought a College of Surgeons of the unit soon became a powerful motorcycle to in 1983 and two regional referral centre for ride around Yorkshire, years later, returned to a radical . and spent as much full-time research post at precious time as he John Anderson FRCS Bristol where he obtained “Not long before he died, I could with his family. ChM – 1953-2013 his Mastership in Surgery. asked John what his most important professional “John also told me: ‘Equally Friend and fellow prostate “In 1987 John decided achievements were. He important for me have cancer expert, Roger to specialise in urology replied: ‘The real highlights been the great friends and Kirby, pays tribute to John and moved to Sheffield. have been helping to colleagues I have worked Anderson, who has died While training, he won introduce major cancer with along the way and from prostate cancer. scholarships, which surgery in urology to the the fantastic fun we have enabled him to spend time UK, setting up the British had in the tremendous “With characteristic working with the famous Association of Urological specialty of urology.’ openness, John was Professor Donald Skinner Surgeons (BAUS) Section keen for his experience in Los Angeles. Here he of Oncology, and being “John was a surgeon’s of prostate cancer to learned the techniques of elected as Secretary and surgeon and an be made public to raise radical prostatectomy for President of BAUS – pity I inspiration to us all. awareness of the disease. localised prostate cancer. can’t deliver on that last bit!’ We shall miss him.”

4 Progress | Summer 2013 Researchers discover genetic changes that could mark out aggressive prostate cancer Recent research has tumours and PSA levels at disease. This would be a one specific type of genetic identified gene changes the time of diagnosis. great step towards having mutation that occurs during that could be used to more reliable information cancer progression. There distinguish life-threatening In this study, the that patients and their are many other types of prostate cancer from less researchers looked at the doctors can use to make genetic changes which dangerous forms. number of copies of each treatment decisions with can lead to cell growth gene in over 400 prostate confidence. going wrong during the As prostate cancer cancers that were development of tumours. develops and progresses, removed by prostatectomy “However, this research The trick for scientists now the genetic code of the (surgical removal of the will need to be confirmed is to understand which cancer cells starts to prostate gland) and by further studies. One changes occur first, and mutate and go wrong. compared the genetic of the weaknesses of whether these changes This can be caused by changes to other data this study is that the lead to and control further making multiple copies including the Gleason researchers only studied changes, or vice versa.” of a gene (known as score, PSA, other indicators amplification) or by the of tumour stage and deletion of a gene (often outcomes for the patient. referred to as a loss). According to a recent Dr Kate Holmes, Head study, patients whose of Research at Prostate cancer cells have lost a Cancer UK, said: “This gene called PTEN and study provides information have many copies of the that may be helpful gene MYC were found to for creating a test to be over 50 times more likely distinguish life-threatening to die than other patients prostate cancer from the who had similarly staged more benign form of the

Progress reports on the FROM THE LAB research we are funding Clinical trial of devices designed to prevent or male devices and pads have different strengths and contain persistent urinary leakage following limitations. It suggests that men should be offered prostate cancer surgery these devices as well as pads, and given support on Professor Mandy Fader how to use them in different circumstances.

Around 10 to 15 per cent of men experience persistent A new approach to testing markers of prostate after treatment for prostate cancer. cancer – year one report Many men use absorbent pads but find them bulky Professor Colin Cooper and Dr Christopher Parker and feminine. This project looked at different devices – urinary drainage sheaths, body-worn urinals or penile Around 80,000 men a year have a biopsy in the UK clamps – which were all tested by 56 men. following a PSA test, but around 50,000 of these biopsies turn out to be unnecessary. This project is The results suggested that urinary drainage sheaths looking at whether markers found in blood and urine were good for using over extended periods, body-worn could be used to identify aggressive prostate cancer urinals were useful for men who couldn’t use sheaths, that requires a biopsy. In the first year of this three-year and the penile clamp was generally viewed as being study, researchers have set up a system for collecting uncomfortable, so was better for shorter periods. The and storing blood and urine from men about to have a study demonstrates, for the first time, that different biopsy and have collected 70 samples.

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

Progress | Summer 2013 5 Specific Antigen in research published in 1970 that described an antigen identified in the prostate.

As you’ve probably worked out, the antigen in semen was the same as that found in the prostate – PSA. PSA: past, However, research continued down different pathways and it took a while for these paths to meet. In 1980 Dr Lawrence D Papsidero identified PSA in the blood of present men with metastatic prostate cancer (cancer that has spread). This finding led to the development of what became the PSA test. The test began to be used by and future the NHS in the 1990s. The PSA test now – raising awareness Behind the controversial test Currently, every man in the UK is entitled to request a PSA test. In 2002 the UK Government introduced the Prostate Cancer Risk Management Programme to help GPs give men asking about the test accurate and balanced information before they decide whether to have it. However that only works when men request the test. And many men don’t know it exists.

To combat this, we launched a programme called Testing Choices to provide all men at a higher risk of The PSA test has been contentious since it first prostate cancer (including African Caribbean men and came into existence. Some think it’s unreliable, men whose brother or father has had the disease) the others that it should be used to screen UK men information and support they need to make a decision. for prostate cancer. Many men and women tell us they think it’s a test that saves lives. We think all men have the right to have a PSA test as long as they know the facts, good and bad, before deciding whether to have it. To explore all the issues behind it, we have delved into the history of its development, Around two thirds of men gathered opinions, and looked at future alternatives. with a raised PSA do not PSA stands for Prostate Specific Antigen. An antigen have prostate cancer is a substance that causes your immune system (the part that organises cells to fight off disease) to produce We are currently trying out different ways to reach men, antibodies. PSA is an antigen that is specific to the including a community walk-in clinic, then we’ll campaign prostate alone. The test measures how much PSA is for improvements in information to be rolled out. As we in a man’s blood. It is normal to find some, but a higher have set out on the facing page, we don’t believe level may mean there’s a problem with the prostate. It the PSA test should be used in a national screening doesn’t mean a man has cancer and the test is not and programme. Our focus is on making sure men understand never has been a test that can diagnose cancer. the pros and cons of the test and on funding research to find a better test to diagnose prostate cancer. So who discovered PSA and when? Well, there is no straightforward answer. Although Dr Richard Joel Ablin The future of testing is most often credited with its discovery, PSA was Advances in genetic medicine are a new and promising identified by a number of different researchers who area of investigation for testing. Recent research has were looking for different reasons and in different places. linked faults in a gene called BRCA2 with aggressive prostate cancer. Testing men to see if they have this In 1960 Dr Rubin Hyman Flocks discovered an antigen gene could predict whether they will go on to develop in the prostate gland, which he called Species-specific the aggressive form of the disease. Researchers have prostate antigens. Later, Dr Mitsuwo Hara (who was also identified 78 DNA changes that increase the risk of looking for a way of gathering forensic evidence for developing cancer, 16 of which are linked to aggressive rape cases) found an antigen in semen (the fluid that prostate cancer. Both of these areas need more contains sperm) which he named Unique antigen in the research and development before any tests become semen. Dr Ablin was the first to use the term Prostate available, but it’s a very promising start.

6 Progress | Summer 2013 Should all UK men over 50 be screened using the PSA test?

Owen Sharp, Chief Executive of Prostate Cancer UK, explains why we don’t think so: “When you look at the Know the facts about the PSA test extensive research behind screening with the PSA test, the numbers just don’t stack up. The negatives far Strengths • Even with a low PSA outweigh the positives. • It may detect prostate you could still have cancer before prostate cancer. “Research does show that it could prevent some men symptoms develop. • To diagnose prostate dying from prostate cancer. However, this comes at • It may lead to finding cancer, more tests are the significant cost of many more men being treated prostate cancer at required, some of unnecessarily, resulting in life-changing side effects. The an early and more which come with risks, PSA test is also unreliable. Around two thirds of men with treatable stage. such as a biopsy. a raised PSA do not have prostate cancer, while one • Repeated tests can • A single PSA test study suggests that around one in six men with a ‘normal’ provide valuable cannot distinguish PSA may have prostate cancer. Put simply, the test is information on between aggressive not accurate enough to be used in national screening. diagnosing prostate and non-aggressive cancer and cancer prostate cancer. “What we really need is to find a better test and that is progression. • It can lead to one of the biggest priorities in our research strategy. We unnecessary have already spent over £15 million on research, and with Weaknesses treatment of non- your support and that of Movember we are going to • It’s not a cancer test aggressive prostate spend a further £25 million over the next three years. – a raised PSA could cancer and life- be caused by benign changing side effects “Research is the way to defeat prostate cancer and prostate disease or a such as incontinence permanently put the issue of the PSA test to rest.” urinary tract infection. and erection problems.

We also asked men with prostate cancer, and their families and friends, and had some responses from health professionals. We heard a huge range of arguments for and against. Here we illustrate this range:

No, because it’s unreliable Yes, because men Yes, but as an indicator and leads to overtreatment won’t go to the GP because there are ofen unless they have to no symptoms Yes, because early detection could save lives Yes, because it would raise awareness Yes, but only if (eg men know the facts) Yes, but only until 33% there’s a better test

18%

16% 13%

7% 6% 3%

You can read more about our PSA campaign at prostatecanceruk.org/testingchoices

Progress | Summer 2013 7 From doctor to patient: The PSA test

to do a biopsy, which carries some risks – infections and bleeding.”

“In my case my PSA rose to 4.3, which can be an indication of prostate cancer but at that level you might decide to watch and wait. I was lucky because I had access to the very latest MRI technology, 3 Tesla scanning, which is not routinely available. I had a scan, which showed a distinct shadow on the right side of the prostate. That told us there was definitely something wrong and that I definitely needed a biopsy. For me the PSA test was providentially sent.”

John Anderson, Roger Kirby, John: “I’ve met so many men who say: ‘Why don’t Consultant Urologist Consultant Urologist we have screening? Why isn’t the PSA test universally available?’ I think it should only be used on men when As discussed in our lead article, the PSA test has they fully understand its limitations. PSA levels can be pros and cons. It can lead to early detection of elevated by anything that affects the prostate, without prostate cancer. However, it is unreliable – some men the patient having prostate cancer. And you can have have a normal PSA, yet still have prostate cancer. a normal PSA and still have very advanced prostate cancer, which was the boat I found myself in. The only John Anderson was dedicated to improving the way we can be sure of the cause is by doing biopsies. lives of men with the disease, even in the last few I think better tests will come along which may be useful months of his life. In March 2013 he and his long- in a screening programme.” time colleague Roger Kirby discussed the pros and cons of the PSA test in a video to help explain the Roger: “I think the way ahead is better imaging of issues around this divisive topic. John’s words are the prostate with 3 Tesla. If there’s a shadow, you a fitting tribute to a life spent working towards a can target the biopsy. If there’s no shadow, you can better future for men. watch and wait and monitor the PSA. There are other advances coming like genetics. If we can use genes to John: “You and I have used the PSA test all our identify men who are more likely to get it, we could do working lives. And before it came along, we saw nothing targeted screening. but patients who had advanced disease when they were presented to us. However, I would say that the “I think a man should know his numbers and be fully PSA test completely failed me. I had a normal PSA four informed. A high PSA level doesn’t mean you’ve got months before I was diagnosed with advanced prostate prostate cancer but you know you’ve got a problem cancer. I had metastatic disease in my liver and I’ve had in the prostate.” chemotherapy. Even in that position, I would still argue that the PSA is a good test but it has its limitations.” John: “Men should know provided they understand the limitations but to have the test in isolation would be Roger: “At the moment, if a man’s PSA is raised, wrong. That is why I think we can’t use it in a national he’s likely to be referred to a urologist who is likely screening programme.”

Please read our tribute to John’s life and work on page four. You can watch the video of his discussion with Roger online: prostatecanceruk.org/news

8 Progress | Summer 2013 NEWS

disease. The nurses will New ways to be able to discuss any risk factors, explain signs and give men the symptoms for prostate information cancer and ensure men understand the options they need for diagnosing the disease We all know that men can and the services available be reluctant to see their to them. GPs so we’re looking at new ways to reach them For more information call Actor Ray Winstone with the health information 0208 563 3913. that they need. affected by prostate TV film urges cancer. Both the executive Our research has shown producer and the that African Caribbean Deloitte joins men to “talk director’s fathers have men and men from the fight had the disease. some socio-economic about it” groups can be particularly We’re delighted to This Father’s Day a Ray Winstone told us: “A reluctant to talk about their announce that Deloitte gripping short film hit couple of friends of mine health and are more likely has chosen us as one our TV screens with one have got prostate cancer. to think about it when of their charity partners big aim: getting people, Thank god they caught it information is provided in for the next three years. especially men, to talk early, it saved their lives. their local communities. They will be supporting a about prostate cancer. I’m 56 and one of them is project to reach 300,000 One in eight UK men will 58, the other younger than We are piloting a new men at highest risk of develop the disease and, me. It’s not an old man’s programme of community prostate cancer called within 15 to 20 years, it is disease. When you’re -based talks about Search and rescue. predicted to become the younger you think you’re prostate cancer where You can find out more most common cancer in gonna live forever. It’s our Specialist Nurses about the partnership at the UK. important to make films will also offer one-to-one prostatecanceruk.org/ like these and say ‘boys sessions with anyone companies Some of the most well- it’s alright to talk about concerned about the known actors in the it rather than have your UK united behind that family turning up at your aim to take part in the funeral’. That’s why I really NEW ON THE WEBSITE film, called Father’s Day, wanted to be a part of prostatecanceruk.org which aired on ITV4. this. Hopefully this film could Ray Winstone, Charles save thousands of lives.” Hear men talk about their experiences of prostate Dance and John Simm cancer treatments in our new videos. Visit our joined Neil Stuke (whose If you missed Father’s Day, Information pages and click on personal stories, character in BBC drama you can still watch it at then treatments. Silk has prostate cancer) prostatecanceruk.org/ and Tamzin Outhwaite fathersdayfilm and find Read about the exciting research projects we’ve just whose father was treated out more about the awarded funding to. Go to our Research pages, click for the disease last year. background behind on funded research and change the year to 2013. The crew have also been the film.

Progress | Summer 2013 9 PROSTATE CANCER AND ME: Colin Jackson

Colin Jackson, 46, is one raised and it turned out of our most successful he had quite advanced track athletes. During prostate cancer. He had to his career he won a have chemotherapy. huge haul of medals I know I’m not including Olympic “He had a very positive silver and World, mind set during his guaranteed Commonwealth and treatment. He said: ‘I’ll European gold. He keep myself healthy and health for life is now a sports do exactly what they tell fitness for life just because commentator and me and what will be, I’ve been an athlete. TV presenter. will be.’ Fortunately the Colin tells us how cancer retracted a lot. “Now I want to make other prostate cancer Since then, they’ve been men aware of prostate has affected checking him on a regular cancer and their general his family and basis and he’s still fine. health and do something talks about his about it. That’s why I increased risk “Although we’re a really organised a men only 5k of developing close family, neither Tony run on Father’s Day (16 the disease. nor Ronnie spoke to me June) called Go Dad Run. about their prostate We asked guys to do it for “Two of my cancer. Caribbean men their health and be fit for uncles have had just don’t like talking about Father’s Day. Prostate prostate cancer. health issues – they’re Cancer UK was the official My father’s eldest a proud bunch. And the charity and we urged men brother, Ronnie, older generation just say to go and see them on was diagnosed first that’s what happens when the day and find out in 2004. Unfortunately, you get older. However, about their risk of prostate the disease was very because my mother’s a cancer. I’m planning to do advanced when it was nurse, my uncles did talk a Go Dad Run every year discovered and not to her and she let us know with events all over the UK. long after he passed away. what was going on. She also makes sure my Dad “When cancer affects your “Then Uncle Tony, my is regularly tested. family you totally, totally mother’s eldest brother, understand the importance was diagnosed in 2010. “As for me, I’m very much of increasing awareness He was in his late sixties. aware that as an African and raising funds for He’d had urinary problems Caribbean man with a research. We need to get and because he was family history of prostate a better test so we can African Caribbean and cancer I have an increased diagnose men like my therefore more likely to risk. I know all the Uncle Ronnie earlier and develop prostate cancer, symptoms – I’m always get them treated.” he was having listening for changes in my regular PSA tests. body and I’ll definitely get Download our leaflet for Unfortunately, in one myself tested. I know I’m African Caribbean men of those his PSA level was not guaranteed health and from our website.

10 PROSTATE CANCER AND ME: Patricia Neeves

Patricia Neeves is 69 and “The clinic did various tests “In August Ken had surgery is on the side lines doing lives in Berkshire. She including a PSA test, which to remove his prostate. more of the coping has two grown up sons, was raised a little. So they When it was examined, and supporting. Christopher and Phillip. sent us to a urologist who they found the cancer was Patricia’s husband Ken did a rectal examination very aggressive and we “Ken recovered completely was diagnosed with and took six biopsies were lucky it hadn’t spread. but at the end of 2000 we prostate cancer in 1997. without an anaesthetic. discovered he had a brain She talks frankly about Poor Ken said it was like “I wasn’t given any tumour, unrelated to the the difficult journey having six of the best. information after the prostate cancer. I cared for to diagnosis and the operation and we were him, mostly by myself, until impact of the disease offered no support on he died in October 2002. on partners. how to cope with the post-operative erectile “Since I lost Ken, I’ve “Ken was diagnosed by dysfunction that done a lot of fundraising a very circuitous route. Partners need followed. Eventually for Prostate Cancer He went to his GP in I went online and found UK including a tandem November 1996 because to know that Prostate Cancer UK. The skydive. I’ve also left a gift he was worried about his treatment can staff supported us all in my Will because I’m impotency, which was the way through. It was passionate about their worsening. The doctor affect them too such a help to call the support services, said it was all in the Specialist Nurses research and mind, and he sent us for “I wasn’t with Ken when for information or education. sexual counselling. the results came back. I’d just to say: ‘I’m That is vital just got a job with a local having a really because “That was an interesting amateur radio station and awful day.’ it’s still the experience! As I had been it was my first day. My cancer that to an all-girls school and shift had barely started “When you’ve got isn’t talked Ken was my first sexual when Ken came in and cancer yourself, you about.” partner, I can remember said: ‘I’ve had a diagnosis focus on dealing with squirming at the intimate and it is malignant.’ it physically questions. When we but the weren’t making the “After that, I went to all partner progress the counsellor his appointments and I’d expected, he decided advise any wife to do so. there was something It’s very important that physically wrong and you both understand the sent us to a sexually implications and have a transmitted disease clinic. chance to ask questions, So there we were squirming because prostate cancer again, wondering what treatment can affect your on earth people were partner’s sexual prowess thinking of us. and that affects you too.

Watch our films on sex and prostate cancer on our website prostatecanceruk.org/personalstories

11 THE MANUAL Your questions answered about Complementary therapies

Many men want to know if complementary therapies can help to treat their prostate cancer. Here Specialist Nurse, Meg Burgess, answers common questions and separates fact from fiction.

What are complementary therapies? bladder The term “complementary therapies” covers a huge variety of approaches from diets to massage and from hypnotherapy to yoga. One reason all these different therapies are grouped together is that they are not usually part of mainstream medicine. However, prostate gland some are available through hospices, GPs and hospitals. Some men find that complementary therapies help them with their symptoms and the day-to-day impact of their penis cancer, or with the emotional side, helping them feel in control. For others, they provide a more complete kind of care, looking after their overall health and wellbeing. testicle There are a few complementary therapies that have research behind them and some are well regulated. But others have neither. It’s worth remembering that some therapies cause side effects and can even be harmful or stop other treatments from working. We suggest you take a cautious approach and let your health team know if you’re thinking of trying something – just as you would for medical treatments.

What’s the difference between complementary and alternative therapies?

Complementary means as well as. So you might use these therapies alongside the treatment choices you make with your GP, nurse or hospital doctor.

To find out more about helping to treat prostate cancer please visit prostatecanceruk.org/information/living-with-prostate-cancer

12 Progress | Summer 2013 Alternative means instead of, in other words, Different things work for different people, so you might choosing only to use these therapies and not have to try something to know if it’s right for you. Always to use mainstream treatments. let your doctor, nurse and other health professionals know if you are thinking of trying something. And tell Mainstream treatments are carefully tested to show that any complementary therapist involved about your they work, to check for safety, and to highlight side effects. diagnosis and any treatments you are having. Many alternative or complementary therapies have not had the same sort of testing. Using them carefully alongside treatments could have benefits. Using them It’s natural, so what’s the harm? instead runs the risk of having no effective treatment. Arm yourself with the facts before you make decisions. Complementary therapies are sometimes called ‘natural’. But natural doesn’t mean harmless. Why aren’t more complementary therapies Herbal remedies, for example, are not usually controlled available through my doctor? and licensed in the way mainstream medicines are. They can have side effects, they might not be cheap, Doctors look for treatments with evidence to show it’s hard to know for sure what they contain, and in they work and what the likely side effects will be. almost every case there isn’t reliable evidence to say Regulations also guide doctors in how someone should what dose is best or if they work. Be particularly careful use the treatment – how much, how often, with or without about buying herbal remedies over the internet – it can other treatments. For many complementary therapies, be even harder to know what you’re getting. this information is very limited, or doesn’t exist.

Some people say they benefit from complementary How can I get complementary therapies? therapies. But others notice no change, or say they’ve had negative effects from what they tried. Without There are a number of ways. You could get scientific evidence, this range of experiences makes it them through: hard for a doctor to give you advice. • your GP, nurse or hospital doctor • a pain clinic, if you’ve got lasting pain However many doctors recognise there are things men • a hospice (they don’t only care for people at the end might find helpful to try, and they should be happy to of life, and some offer therapies as day services) explain any concerns they have about therapies you discuss with them. They might be aware of some side Maggie’s Centres are a network of drop-in centres effects to watch out for and they can check if there are offering cancer information and support, including any known effects on other treatments you are having. some complementary therapies. Find out more at www.maggiescentres.org or call 0300 123 1801. Is there anything to help me deal with prostate problems? The charity Penny Brohn Cancer Care offers a range of complementary therapies, including residential courses, There is some research that suggests therapies through their national centre just outside Bristol. Find including aromatherapy, hypnotherapy, out more at www.pennybrohncancercare.org or call acupuncture, reflexology and massage could help you 0845 123 23 10. deal with the stress of living with prostate problems. They might help you feel more in control and better in If you’d prefer to find your own therapist, the your day-to-day life. They can help relieve anxiety and Complementary and Natural Healthcare Council can depression. This in turn could help you cope with the help you make sure that they are properly qualified and effects of illness such as pain and fatigue. If you have belong to a professional body www.cnhc.org.uk or call fatigue or ongoing pain, you might find it useful to see 020 3178 2199. Ask therapists about their knowledge our fact sheet, Managing pain in advanced prostate and experience of cancer. cancer, and our Get back on track service. And if you are thinking about using a herbal remedy or Hot flushes are a common side effect of hormone supplement, the Medicines and Healthcare products therapy. Some men try herbal remedies such as Regulatory Agency (MHRA) has advice about using sage tea, to help with this. However, there’s very little them safely – www.mhra.gov.uk or call 020 3080 6000. scientific evidence that herbal remedies are effective for managing side effects. A small number of studies With thanks to Georgia Diebel and Dr Catherine have suggested that acupuncture might help with hot Zollman at Penny Brohn Cancer Care for their input. flushes. You might get acupuncture through the NHS, or a complementary therapy team linked to a hospice.

Progress | Summer 2013 13 PROSTATE CANCER AND ME The hobby that helped me by Steve Gledhill could no longer look after can become a daunting me great companionship “I was diagnosed with her border terrier, Gypsy, place. Gypsy got me out about the house.” aggressive prostate cancer and offered her to me. I of the house. I exercised in early 2009. By October wondered if it was a good a great deal and chatted of that year I’d had idea as I’m in my early with other dog walkers. temporary brachytherapy, 60s and the children have She also accompanied me six weeks of radiotherapy fled the nest. We’d had a to our local pub where I and had been on border terrier when they made friends. hormone drugs for six were younger – a very months. Throughout this affectionate and loyal pet. “Having a dog has been my doctor encouraged As they say, a dog is a very therapeutic for me. me to exercise but I felt man’s best friend so we She’s not as much hard extremely tired. I’d look gave her a new home. work as I thought she outside at the wet and would be and ultimately cold and think ‘Not today!’ “Receiving hospital she got me out again and treatments can make meeting people. Seeing her “One day though, a you very dependent on charge around puts a smile neighbour told me she support and the real world on my face and she gives

(Penguin Books) Adrian Mole: The Prostrate Years Extract 2/3 Here is the second of time in two days. It wasn’t quite as bad as the last three extracts kindly time. When I had dressed myself again, he said, ‘Your loaned to us by writer prostate is not what I would like. I will take some bloods Sue Townsend from her and then we will wait...’ fabulous book, Adrian Mole: The Prostrate years. Friday 21 September As I walked down the lane towards Dr Wolfowicz’s Now thirty nine-and-a-half, Adrian is living in the country surgery, a golden sunshine shone through the branches in a semi-detached converted pigsty adjoining his and somebody was burning leaves somewhere. parents. The spark has fizzled out of his marriage to When I was called in, he said immediately, “Mr his second wife Daisy and Adrian’s nightly trips to the Mole, I have your results and I’m going to refer you lavatory have become alarmingly frequent. to a consultant urologist for further examination.’ It felt as though my blood had turned to water. Thursday 13 September ‘I have written to Mr Tomlinson-Burk at the Dr Wolfowicz lives in an Edwardian house just Royal Hospital. He’s one of the best urologists in outside the village. the East Midlands.’ After typing in my name and asking me if now lived I said, ‘Yes, but how is he rated in the British Isles?’ in Belfast, to which I answered, ‘No, I live at Number I stopped at the post office on the way home. Mrs Two the Piggeries,’ he sighed and took my medical Lewis-Masters was at the counter drawing her pension. records. He read the last few pages, including the letter, She gave me a nod of recognition. We left the shop then said, ‘So you’ve had a DRE?’ together and for some reason I found myself telling ‘Yes,’ I said, ‘so I don’t need another. All you need her about my prostate trouble. She stopped walking to do is take some blood.’ and said, ‘The men of the desert used to call it the Old Dr Wolfowicz frowned and said, ‘Please Mr Mole, Man’s Curse. Their cure was to take camel dung and do not tell me how to do my job. I will need to examine use it as a poultice around their genitals.’ you myself. Now are you getting on the couch?’ ‘And did it work?’ I asked, as we resumed walking. He put on a pair of gloves and I pulled my trousers ‘Of course not,’ she said, ‘but it seemed to relieve down and got into the foetal position for the second the symptoms somewhat.’

14 Progress | Summer 2013 In the SPOTLIGHT THANK Mark O’Flynn, Ever since then he has 52 from Hinckley been hungry for new YOU Mark was diagnosed challenges. He’s with prostate cancer in climbed Ben Nevis spring 2003. He opted and completed nine for surgery followed by triathlons plus a half radiotherapy. While still in marathon. In recognition £1.3m Prostate Cancer UK his hospital bed, he had of his incredible fundraising Trustee and surgeon an idea to climb Snowdon for us and his other Roger Kirby raised this in Wales to raise money community work, Mark amazing total on five Hikes for Prostate Cancer UK. was chosen to carry the for Hope in Africa and Asia Olympic torch through over the last year. In September 2003 he did Melton Mowbray. it, raising over £2,500. “It was tough, but I felt my “It gives me goose body had let me down pimples thinking about it. and I wanted to be fit.” It was just brilliant.” MILES

“After radiotherapy, Dad I wouldn’t change a thing 500The distance David was put on hormone about him and I know the Annand walked in treatment which has rest of my family feel the support of our Football worked better than we, same. I hope he knows League partnership. TOP or even the doctors just how much I love him.” expected. As grateful as we all are for this, I know If your dad is amazing DAD that sometimes Dad feels and you’d like everyone to £1,500 as though he is not as know, please get in touch M&S employee Deborah masculine as he used to and tell us about him. James raised this over be. I want him to know three years in support of that he is still the same her dad, uncle and father strong and fierce protector -in-law, all diagnosed with that he was when I was prostate cancer. a kid. Dad always shows that he is proud of us and Liz Weston’s father, I know he’s always there Pat, has been living for a cuddle with prostate cancer for if I need it. many years. She tells 209 us why he is and always The number of politicians has been a Top Dad. in Westminster and Holyrood who “My dad was diagnosed supported our Days with prostate cancer more of Action in March. than 10 years ago. He hasn’t let it change his life. He is still the best dad and £10,000+ the most loving husband to John Malcolm and his my mum. Their relationship team cycled from London is the type that I hope I to Paris and raised this can find one day. great amount.

Read more Prostate cancer and me stories on our website prostatecanceruk.org/news

Progress | Summer 2013 15 GET INVOLVED

• More than 50 clubs Join our squad took part in Movember Tea needs you for the next raising £56,000. This summer we are asking you to grab three seasons • Twelve clubs wore our your rolling pins and We’re delighted to logo on their shirts give prostate cancer announce that our throughout the season its marching orders fantastic partnership with with countless players by organising a Tea The Football League is and managers wearing for Victory party. Bake now set to continue for our Man of men cakes, brew tea, invite the next three years. This pin badge. everyone you can and gives us an incredible raise money for men opportunity to build Do you fancy joining with prostate cancer. on what we achieved our squad for the next together in the 2012- three seasons? We really We can provide all the 2013 season. need your help to reach information, materials more football fans across and advice to help you • Thanks to our team the country. get started including of 700 volunteers we exclusive 1940s-style raised over £56,000 at Visit prostatecanceruk. bunting, tablecloths and more than 60 games org/football to find out cake stands designed by and reached over how you can get involved. Wayne Hemingway. 500,000 fans across the UK. We will fight it on the tea tables, we will fight it at the street parties and We are looking for people For more information together we’ll help more Help us decide from within the UK who: please get in touch by men survive prostate • have experience of emailing volunteer@ what research cancer and enjoy a better living with prostate prostatecanceruk.org quality of life. to support cancer and awareness or calling 020 8222 7665. We are looking for of how the disease Visit prostatecanceruk. volunteers to join our affects individuals, org/teaforvictory for new Grants Advisory families and carers more information. Panel and help us • demonstrate an ensure the research interest in research we fund addresses the studies, and have a most important issues basic understanding of Could you be experienced by men living research terminology with prostate cancer. and processes a volunteer • can communicate with speaker? Joining the panel a range of people and You could represent us at would give you the have the confidence a range of events, giving opportunity to read and to discuss issues in a talks about prostate discuss research grant committee environment cancer and prostate applications; represent • demonstrate a problems, your personal the views of people living commitment to experience of the disease with prostate cancer to representing the views and the work we do. our Research Advisory of the wide range of Contact us at volunteer@ Committee and have an people living with prostatecanceruk.org impact on the funding prostate cancer or call 020 8222 7665 decisions made by in the UK to find out more. the committee.

16 Progress | Summer 2013 13-15 14 EVENTS Sept Sept

CALENDAR The 3 Peaks Challenge Thames path challenge July 2013 - Feb 2014 Conquer the three highest Starting close to Putney peaks in the UK, Scafell Bridge, this epic endurance Pike, Ben Nevis and walk against the clock Snowdon, all in 24 hours! follows the unique Thames Train to become one of Path National Trail. our volunteer speakers: Give prostate Prostate cancer 3 September Bupa Great North Run masterclasses cancer its and 1 October Sign up now and join for primary care Scotland 54,000 runners to take marching orders part in the world’s most professionals These two prostate cancer by organising a 10 September popular half-marathon. masterclasses are open and 8 October Tea for Victory to all health professionals East Midlands/West working in primary care. party this Midlands/South West Join us on 20 September summer. in Milton Keynes or 22 17 September October in Maidstone. and 15 October North West/North East

24 September and 22 October London/South East Movember, the month Jurassic Classic Stunning cycle ride along when men get spectacular coastline. hairy-lipped Voted one of the top ten cycle rides in the UK and to raise money Europe by the Guardian. for prostate Sign up now. 15 cancer, is Sept approaching. 11 August More events

21 July 25 August Great Weston Ride Ride UK 24 3-4 August 14-15 September Total Warrior Silverstone 24 4 August 29 September Ride London 100 BMW Berlin Marathon 16 August December Kilimanjaro Summit Climb Carols by candlelight

Find out more at prostatecanceruk.org/get-involved

Progress | Summer 2013 17 Our services

Specialist Nurses Information on Prostate cancer The blue men on this map 0800 074 8383 prostate cancer support groups represent the locations of support groups who have (Mon-Fri 9am-5pm and 0800 074 8383 Meet and talk to other people affected by asked to be listed on our Wed 7pm-9pm) We provide free information prostate cancer who website. Visit the We can Our Specialist Nurses on prostate cancer and understand what you’re help pages on our site to have the time to listen and prostate disease. Order going through. We run a find a group near you. answer your questions or download copies from number of support groups on anything to do with the information section in Scotland and there Please note that some prostate cancer and of our website or call our are over 70 independent groups run meetings in prostate disease. Specialist Nurses for help groups across the UK. more locations than the choosing the publications one listed. One-to-one you need. telephone peer support 0800 074 8383 Talk things over with someone who’s been there. We match callers with The more I trained volunteers who’ve learned and had a similar experience. understood Online community about prostate Join the community online and talk to others cancer, the who know what you’re safer I felt going through. You can ask questions, post information and share Get up and go your ups and downs. 0141 314 0050 Get back on track If you have prostate cancer it’s important to try and stay 0800 074 8383 active. Get up and go can If you have been diagnosed partner you with a with prostate cancer and motivator who will help are struggling with fatigue, you find a physical activity the nurses in our Get that works for you. All of back on track team can our motivators have had help you can manage and prostate cancer themselves. reduce these symptoms.

Find out more about our services at prostatecanceruk.org/we-can-help

18 Progress | Summer 2013 Other useful organisations Telephone British Association financial and emotional for Counselling and support for people with peer support Psychotherapy cancer, their family www.itsgoodtotalk.org.uk and friends. When facing a diagnosis brachytherapy. I read the 01455 883 300 of prostate cancer, talking literature and did research Provides information about Maggie’s Cancer to someone who has on the internet. However, I counselling and details of Caring Centres been in a similar situation started to feel that it didn’t therapists in your area. www.maggiescentres.org can really help. Our matter how much I read 0300 123 1801 telephone peer support because no treatment was Cancer Black Care Provide information and service gives men and obviously right or wrong. www.cancerblackcare. support to anyone affected those close to them the org.uk by cancer. Their website opportunity to do that. “I was leaning towards 020 8961 4151 holds a list of centres brachytherapy, but being Provides information and across the UK and has We match each caller only 57 and quite active, support to people from an online support group. with a trained volunteer I was really concerned black and minority ethnic who has had a similar about side effects, communities who are NHS Choices experience and can particularly incontinence affected by cancer. www.nhs.uk sympathise and share and problems having sex. Provides information to their experiences of CancerHelp UK support you in making treatments or side effects. “Prostate Cancer UK put http://cancerhelp. decisions about your own They can also talk me in touch with two men cancerresearchuk.org health, including an A-Z of about the impact of the who’d recently had 0808 800 4040 treatments and conditions, disease on relationships brachytherapy. We had (Mon-Fri, 9am-5pm) and information on NHS and the experience of long conversations about CancerHelp is the patient health services in your losing someone. the side effects I was information website of local area. worried about and their Cancer Research UK Digby Bevan used the treatment experiences. and provides information Penny Brohn service when he was They explained in detail about living with cancer. Cancer Care diagnosed with prostate what it had been like for www.pennybrohn cancer in 2008 at the age them immediately after College of Sexual and cancercare.org of 57: “The telephone peer and in the longer term. Relationship Therapists 0845 123 2310 support service was a www.cosrt.org.uk Offers support using great help to me. I’d been “Talking to them really set 020 8543 2707 complementary therapies given three treatment my mind at rest and helped For information on sexual and self-help techniques options: surgery to remove me make a decision. I had and relationship therapy, to people affected by the prostate, external brachytherapy and have including a list of therapists. cancer. Their approach beam radiotherapy and had no serious side effects.” is designed to work Health with Pride hand-in-hand with If you’d like to talk to someone who’s been there, www.healthwithpride. medical treatment. call 0800 074 8383 to find out more. nhs.uk An online health resource Relate for lesbian, gay and www.relate.org.uk bisexual patients. Their 0300 100 1234 website has information Relationship counselling You can help on cancer issues and and sex therapy for We’re really proud of the services we provide for erectile dysfunction for individuals and couples. men. However, every year in the UK 40,000 more gay men. men are diagnosed with prostate cancer. Sexual Advice We need to reach a lot more of them. Macmillan Association Cancer Support www.sda.uk.net If you want to join the fight and help more men like www.macmillan.org.uk 020 7486 7262 Digby and Colin’s Uncle Ronnie to put prostate 0808 808 0000 Provides a helpline service cancer behind them, please fill out the enclosed (Mon-Fri, 9am-8pm) for advice and information form or visit the Get involved section of our website Provides practical, about erectile dysfunction. to find out more or make a donation. Thank you.

Progress | Summer 2013 19 RAY WINSTONE CHARLES DANCE JOHN SIMM NEIL STUKE TAMZIN OUTHWAITE CYRIL NRI STUART LANG

“A minidrama with a twist - and offers a storyline better than much of Hollywood.” Richard Brooks - Sunday Times FATHER’S DAY

Watch the film at fathersdayfilm.co.uk

Prostate Cancer UK is a registered charity in England and Wales (1005541) and in Scotland (SC039332). Registered company number 2653887. 1834