prostate matters

Newsletter of the Cancer Support Federation Issue 7 February 2010

Contents New Year, new layout Page 2 Report of the Great PSA Debate and a sponsor for our Page 3 PSA Debate continued Page 4 and new all colour newsletter! Diet Update Page 5 Diet and Lifestyle The Prostate Cancer Support Federation Changes Page 6 RADICALS Annual Conference & AGM Clinical Trial Page 7 The Great PSA Debate Questionnaire Analysis Report Living well with Page 8 National Cancer Patient Information Prostate Cancer Prescriptions

Worried or concerned Saturday 24th April 2010 about prostate cancer? 11.00 to 4.45pm National Help at the Line 0845 601 0766 Penny Brohn Cancer Centre Chapel Pill Lane PM Editor: Roger Bacon email: [email protected] Pill, Bristol You can download this newsletter direct from our website. Go to: BS20 0HH www.prostatecancerfederation.org.uk/ ProstateMatters_latest.pdf Book by phone: 01243 572990 or online The Federation e mail address is: Full programme of speakers will be sent out to member groups [email protected] and published on our website when available It is intended to publish this www.prostatecancerfederation.org.uk/agm_2010.htm newsletter 4 times a year

Newsletter Sponsored by Mediwatch

“Providing the complete diagnostic solution for Urologists” The Great PSA Debate – November 10th 2009, Leamington Spa

Over a hundred representatives of Invited speakers that attach to its use, in particular prostate cancer patient support Before the debate proper, the scene automatic biopsy and treatment of groups went to Leamington Spa was set by Dr Dennis Brennan, a men with a PSA above a notional th on 10 November 2009 to join with recently retired company doctor, threshold. He emphasised that it is six distinguished experts in The who illustrated the difficulties GPs a test that we must use until Great PSA Debate, organised by the face in deciding how to respond to something better comes along. Prostate Cancer Support Federation men asking for the test. He Ken Muir, Professor of epidemiol- and sponsored by the Graham represented the people who have to ogy at Warwick University, then Fulford Charitable Trust and be convinced by the arguments of spoke against the motion. He Prostate UK. the debate. played an intriguing ‘parlour’ game Background Mr David Baxter-Smith, with the audience to show how the When it comes to PSA Testing, the consultant urologist of many years potential benefits of the test affect a general views of patients are experience who has conducted very small proportion of society completely at odds with those of sessions of PSA Testing throughout whilst the potential harms, due to many ‘professionals’. Patients, the country and is the Federation’s the side-effects of unnecessary almost to a man, are in favour of medical advisor, opened the debate treatment, affect a very large universal testing, as it might lead to for the motion. He reminded the proportion. He suggested that, early detection and hence cure of audience that when he started whilst the argument about testing many of the cancers currently practice, very often the first will rage on and on, a better way to detected late, when incurable. symptom of prostate cancer would spend our time would be to look at Health professionals generally have be one of the effects of bone ways to prevent the disease. a much more sceptical view. metastasis, e.g. paralysis resulting Professor Roger Kirby, a Possibly because of very different from spinal damage. The discovery urological surgeon, and Chairman agendas, those presenting the of PSA as a marker, however flawed, of Trustees of Prostate UK, resumed arguments on both sides are often radically changed the way prostate the case for the motion. He talking past each other. cancer is managed. He made the outlined the obvious benefits of a point that over-treatment, which is We needed a forum in which those man knowing his PSA and, as a acknowledged, is not the ‘fault’ of on each side of the argument could counter to the over-treatment the PSA Test, but of the protocols talk intelligently to each other, and argument, proposed a more look for where consensus might be found. Above all, the aim of the day was to get the prostate cancer charities to speak with one voice on the issue. The wording of the motion was carefully chosen, avoiding the topic of formal screen- ing, as it was clear that there was not the remotest chance of agreement on that. Instead, it concentrated on the idea that men should be encouraged to monitor their PSA levels. It was: “Every man at risk of prostate disease … should be encouraged to check his PSA every year.” Voting at the debate 2 sophisticated screening strategy: Dr Chris Parker, our final major charities are agreed on a identify at risk groups and monitor speaker, oncologist from the Royal policy for awareness raising about their PSA kinetics. In such a regime Marsden, explained his own the availability of PSA testing for all one would look at risk factors (e.g. personal view, which forces him to men at risk. genetic risks) first, then screen if reject the motion. He prefers to appropriate, backing up the basic accept a small increase in risk of Follow-up PSA screening test with other tests, death through not knowing his Two streams of work have been e.g. PCA3 and genetic markers. PSA rather than the very much identified. First, we must build on larger increase of risk of the consensus that men should be John Neate, Chief Executive of unnecessary treatment. He made aware of the test. The The Prostate Cancer Charity, speak- illustrated graphically how the Prostate Cancer Charity are taking ing against the motion, reviewed recent European trial had showed a the lead on this, and we, in the the Charity’s research into patients’, 20% reduction in mortality, but at Federation, are involved in their GPs’ and the general public’s expense of massive over-treatment. work. Our goal is to ensure that the attitude to PSA testing. The Charity He outlined a number of other risk NSC reflects this in whatever supports the right of every man factors that would be more recommendations it makes about over 50 and those at higher risk – to effective than a screening prostate cancer screening in the make an informed choice about the programme in reducing death Spring. PSA test, but it does not believe through early detection. Secondly, the risk assessment that a national screening approach needs to be developed programme would offer an accept- Open debate further. Prostate UK have offered to able balance between benefit and As might be expected, the open take the lead on this and we look harm. It will work with the UK debate session was lively and views forward to some early results. National Screening Committee were passionately expressed. How- Three months after the event, the (NSC) to bring the vital perspectives ever, it began to emerge that the ‘buzz’ that was reported around of men to their decision making two sides of the argument were Leamington Spa station that process and, crucially, if the NSC actually much closer than had been evening has abated somewhat, and recommends against screening, the thought. In particular, there was already there are frustrations that Charity will lobby for alternative agreement by all that not much seems to be happening. It arrangements, e.g. through routine is still early days, but we, the ‘well man’ health checks.  men should be aware of the PSA test, its benefits and limitations, Federation will keep the pressure Dr Tom Stuttaford, prostate and of their right to have it; on. An update on both these issues cancer patient and the political and will be given at the Annual th media advisor for the Federation,  GPs need education; Conference on 24 April. who is well known to readers of The  research is urgently needed to Sandy Tyndale-Biscoe Chairman PCSF Times and The Oldie, spoke next. identify and get consensus on He made a comparison with other how to use risk factors to screening programmes, where, on govern follow-up action. Federation ‘Real similar evidence, screening has PCRMP’ leaflets been adopted. He knew, from his Indeed, on a final vote in which the As the Department of Health time as an MP, that there is strong wording was changed to read has now issued revised political pressure against screening, “Every man at risk of prostate guidelines to GPs on PSA and that mortality figures have for disease … should be made aware of testing, we have updated some time been ‘fixed’. The the PSA test, its benefits and and re-printed our own Treasury always rules, but the limitations and should be able to guideline sheet to distribute to GPs. If your group would financial arguments don’t stand up freely exercise his right to have it”, there was total agreement, with a like a further supply of – early detection would these leaflets, contact single abstention – a major undoubtedly save money. 0161 474 8222 achievement. For the first time, the

3 with prostate cancer” was the Prostate Cancer and Diet Update study conclusion. There has also been research look- ing at diet and survival after NHS Choices recently reviewed where soy intake is low. This may 8 prostate cancer1. This was follow- be because of chemicals found in prostate cancer diagnosis . This ing the June 2009 publication of soy called phyto-oestrogens. showed that adoption of a plant- Healthy Eating: The Prostate Care based diet may slow disease Several studies have shown a Cookbook, which was produced in progression and improve protective association for prognosis. However the authors association with the Prostate selenium, reporting a 30–80% risk Cancer Research Foundation. commented that additional long- reduction for prostate Prostate cancer is the most term therapeutic clinical trials are cancer. However, several studies needed to further elucidate the common cancer in men in the UK showed no association. – it accounts for nearly a quarter role of diet. (24%) of all new male cancer Green tea has been studied due to diagnoses. The lifetime risk of its regular consumption by 1. NHS Choices. Prostate Cancer- Cookbook: being diagnosed with prostate Japanese and Chinese men whose http://www.nhs.uk/ cancer is 1 in 10 for men in the prostate cancer risk is low. Green 2 news/2009/09september/pages/ UK . tea contains high level of polyphe- prostatecancercookbook.aspx nols which have anti-oxidant (accessed 23 October 2009) World Cancer Research Fund says effects. The evidence is not we all make lifestyle choices every conclusive. More research into the 2. Cancer Research UK. UK Prostate day and there is overwhelming possible chemo-preventive Cancer incidence statistics: evidence that the choices we make properties of green tea is needed. http://info.cancerresearchuk.org/ can make a big difference to our cancerstats/types/prostate/incidence/ cancer risk3. Cancer Research UK4 (accessed 23 October 2009) 1 and NHS Choices have made the 3. World Cancer Research Fund. The following comments about diet “Countries that Choices that affect your cancer risk. and prostate cancer: http://www.wcrf - u k . o r g / Countries that have a low fat and have a high preventing_cancer/diet/ choices_that_affect.php high vegetable intake in the diet intake of soy in (accessed 23 October 2009) have lower rates of prostate cancer. However, it is not certain their diet tend to 4. Cancer Research UK. Prostate Can- whether this is directly due to fat cer risk factors: intake. Studies are ongoing. have much lower http://info.cancerresearchuk.org/ cancerstats/types/prostate/ Lycopenes are chemicals found in rates of prostate riskfactors/?a=5441 tomatoes and may help to prevent (accessed 23 October 2009) prostate cancer. It is noted some cancer (and other 5. Allen NE. Key TJ. et al. Animal studies of lycopenes and prostate foods, protein, calcium and prostate cancer have shown a reduction in types of cancers) cancer risk: the European Prospective risk but others have not. compared to Investigation into Cancer and Dairy products, as a source of Nutrition. British Journal of Cancer calcium, have been extensively countries where 2008; 98(9): 1574-81. studied in relation to prostate 6. Yan L. & Spitznagel EL. Soy cancer. Several studies show a soy intake is low.” consumption and prostate cancer risk small significant increase in risk, in men: a revisit of a meta-analysis. but findings differ by whether it American Journal of Clinical Nutrition affects advanced or localised 2009; 89: 1155–63. 5 tumours. The EPIC study showed Confirming the message of Cancer 7. Sinha R. Park Y. et al. Meat and overall a 32% increased risk for Research UK and NHS Choices, a Meat-related Compounds and Risk of 35g/day higher intake of dairy 2009 systematic review of studies Prostate Cancer in a Large Prospective protein and a 7% risk increase for on soya consumption6 suggested Cohort Study in the United States a 0.3g/day intake of dairy calcium. that consumption of soya foods is American Journal of Epidemiology Protein and calcium from non- associated with a reduction in 2009; 170(9): 1165-1177 dairy sources were not associated prostate cancer risk in men. 8. Berkow S. Barnard ND. et al. Diet with risk. 7 A large study in the United States and survival after prostate cancer diag- Countries that have a high intake examined the associations nosis. Nutrition Reviews 2007; 65-9: 391-493. of soy in their diet tend to have between meat consumption much lower rates of prostate and prostate cancer. “Red and Article written by Dr Philip Bickley cancer (and other types of processed meat may be Published in ‘The Vegan’ winter 2009 cancers) compared to countries p o s i t i v e l y a s s o c i a t e d www.vegansociety.com

4 Prostate Cancer Diet and Lifestyle changes Research Foundation

The role of diet interested in your views on pomegranate juice can delay PSA doubling time. Evidence clearly points to diet food, prostate health and how you view a cookbook on being a significant factor in Vitamin D development of cancer. Several Prostate Cancer. Please log on instances have been reported of to their website and complete a There has also been research increased prostate cancer in short questionnaire. that suggests that sunlight can populations that have switched help reduce the risk of prostate from their traditional diet to Pomegranates cancer. It is thought that the body's manufacture of Vitamin Western-style foods; and The BBC reported in September D which is produced after although there is much more to 2005 on research suggesting exposure to sunlight helps be learned on this topic, we can that pomegranate juice may protect the prostate. be fairly certain from research help slow down the progress of findings that those who prostate cancer. consume a diet rich in meat and Prostate Cancer dairy have a higher incidence of We were fortunate to have the prostate cancer than those who support of POM Wonderful at Research don’t. our 2008 Gala Dinner, who Foundation On a more positive note, there donated bottles of their 1st Floor, is much talk now about how pomegranate juice for every 1-3 Worship Street, attendee. Research using POM your diet and lifestyle, and in EC2A 2AB particular some specific food Wonderful undertaken by groups, can delay or even retired PCRF Trustee Arie Telephone: possibly prevent cancer. Here Belldegrun at UCLA has 020 7330 0990. are a couple of examples. suggested that drinking The Prostate Care Cookbook Launched in June 2009, the Prostate Care Cookbook is dedicated to foods that sustain prostate health. Working with Prof. Margaret Rayman and her team at the University of Surrey we have pulled together all the very latest thinking on the effectiveness of different foods, and Prof Rayman's team have written some imaginative recipes to get these into your daily eating regime. The RRP is £12.99 or you can order the cookbook online via Amazon at a discounted price. Publisher: Kyle Books, 2009 ISBN 1906868042, 9781906868048.

Would you like to help with our research? Researchers at the Food, Consumer Behaviour and Health Research Centre at the University of Surrey are

5 RADICALS Clinical Trial Radiotherapy and Androgen Deprivation In Combination After Local Surgery RADICALS is a large clinical trial which is taking place in the UK and Canada. It will recruit around 4000 men to help answer two important questions for men who have had surgery for prostate cancer:  When should radiotherapy be used after surgery?  Should hormone treatment be used with radiotherapy after surgery? There are 2 parts to the study: Radiotherapy Timing Comparison(Fig. 1) & Hormone Duration Comparison(Fig. 2)

Radiotherapy Timing Comparison surgery for prostate cancer. This comparison is suitable for men who have had When radiotherapy is used after surgery for prostate surgery for prostate cancer within the past 5 months, cancer, it can be given either alone or together with and who have at least one of the following 5 risk factors hormone therapy. Both approaches are commonly used for recurrence (initial PSA > 10, Gleason score 7-10, in the UK. We do not know which is better and, if it is positive margins, extra-capsular extension, or seminal better to use hormone therapy, we don’t know for how vesicle involvement). long it should be given. RADICALS tests whether men receiving radiotherapy after surgery also need hormone In the UK, radiotherapy is usually given after surgery if therapy. and when the PSA level starts to rise (deferred radiother- apy). An alternative approach is to use radiotherapy in In the Hormone Duration Comparison men who choose all men within 6 months after surgery (early radiother- to join the trial are divided into three groups: apy). Early radiotherapy might prevent the cancer from  Men in the first group will have radiotherapy alone coming back but might also bring unwanted side-effects.  Men in the second group will have radiotherapy and RADICALS is comparing these two approaches. To six months of hormone therapy ensure we can make a fair comparison, men who choose  Men in the third group will have radiotherapy and to join the trial are divided at random into two groups: two years of hormone therapy  men in one group receive regular PSA monitoring Figure 2. Patient for post-operative radiotherapy after surgery. If their PSA starts to rise, even slightly, (either early or deferred) radiotherapy is given (deferred radiotherapy)  men in the other group receive radiotherapy within 6 Hormone duration RANDOMISATION months after their operation (early radiotherapy)

Figure 1. Eligible man after Radiotherapy Radiotherapy Radiotherapy Alone + 6 months + 2 years hormone therapy hormone therapy RT timing RANDOMISATION Hormone Duration Comparison Around 400 patients have entered the trial so far. This is Early radiotherapy Deferred radiotherapy a good start, but nowhere near enough. Around 5,000 men have a radical prostatectomy every year in the UK. If just one in 5 of them were to take part in RADICALS, Hormone Duration Comparison then we would complete recruitment in around 3 years. This comparison is suitable for men who are due to have What if the RADICALS trial is suitable for me radiotherapy to the prostate bed at any time after surgery for prostate cancer. There are 67 hospitals throughout the UK that are When radiotherapy is used after surgery for prostate participating in RADICALS. Your doctor should be able cancer, it can be given either alone or together with to provide you with information about the trial. If the hormone therapy. Both approaches are commonly used study is suitable for you and you are interested in taking in the UK. We do not know which is better and, if it is part, you will be given a patient information sheet. You better to use hormone therapy, for how long it should be will be asked to take it away with you so you have time given. RADICALS tests whether men receiving radio- to read and think about it. therapy after surgery also need hormone therapy. STOP PRESS: Four patient representatives (well known to some of you!) have kindly helped to film a RADICALS Informa- This comparison is suitable for men who are due to have tion Video. Available from your hospital or online via the radiotherapy to the prostate bed at any time after website: www.ctu.mrc.ac.uk 6 The Great PSA Debate Questionnaire Analysis Report

Introduction The stage at diagnosis has been and 5 being high. The severity of On the 10th November 2009 at the listed in two groups: those aged less incontinence was high in nearly Pump Rooms in Leamington Spa, than 65 (<65) and those aged 65 or 45% of cases. the Great PSA Debate took place. older (65+). From the bar chart it Incontinence 25 can be seen in the <65 age group 23 To maximize debate findings a de- 22 tailed questionnaire was completed that approximately 45% of men 20 s e

were diagnosed at a localised stage, s a 15

by 75% of delegates. This report C

f o

r

19% were locally advanced and 36% e provides the findings and conclu- b 10 m u sions from this questionnaire. at an advanced stage. As can N be seen these results differ 5 4 General Statistics 0 0 significantly with the 65+ age group 0 Delegates attending the debate 1 (Low) 2 3 4 5 (High) where 56% were diagnosed Severity numbered just less than 100 result- localised, 38% locally advanced and Erectile dysfunction or impotence ing in 77 delegates completing the 6% advanced stage. complication cases have been questionnaire. The ages of male 100% grouped together. Again the sever- respondents ranged from one aged Advanced Advanced ity of both was high, in approxi- 80% Locally e

27 and the remaining 61 being aged g Advanced a t

n mately 65% of cases with a low e

c 60%

54 to 78 years. The ages of female r Locally e

P Advanced incidence of erectile dysfunction or s i

respondents ranged from one aged s

o 40% n

g impotence in just over 11% of cases. a 26, one aged 43 and the remaining i Localised D Localised 13 being aged 60 to 73 years. 20% Erectile Dysfunction or Impotence 25 Women 0% 22 <65 65+ 20 15 Age Groups s e

19% s

a 15 C

f o

r e

A reason for these differences in b 10 m u

N 6 6 diagnosis between the two age 5 4 groups is attributed to lack of 5 0 awareness of the symptoms as 1 (Low) 2 3 4 5 (High) Severity Men clearly indicated in the bar chart 62 which shows that men in the 65+ Severity was classified mid range for 81% age group are twice as aware as approximately 9% of cases. It must younger men in the <65 age group. be noted that a serious complica- Prostate Cancer Diagnosis tion of hormone suppression Prostate cancer sufferers were 100% therapy is erectile dysfunction in

80% requested to indicate their stage at s the majority of case. As hormone e g a

t NO n

diagnosis by ticking boxes relating e therapy is the initial treatment for

c 60% NO r e P to localised, locally advanced and advanced prostate cancer sufferers, s s

e 40% n e

advanced prostate cancer. Just over r these cases should not be a w A half (54%) were diagnosed at a 20% YES considered when assessing the localised stage, benefiting from the YES impact of complications from 0% greatest number of treatment <65 65+ traditional treatments such as options and the greatest possibility Age Groups Radical Prostatectomy and of a cure from the disease. Men Radiotherapy, especially as these It can be concluded that younger diagnosed at a locally advanced complications are often quoted as men aged below 65 are at a greater stage represented 33% which the consequence of over treatment risk of being diagnosed with pros- meant they should have had a brought about by no reliable tate cancer at a locally advanced good chance of a cure but had less diagnosis method to differentiate stage or at an incurable advanced treatment options. Unfortunately, between the life threatening (tigers) stage because of ignorance (lack of 13% were diagnosed with advanced and non life threatening awareness) of the symptoms and prostate cancer. (pussycats). Interestingly, treat- risks of prostate cancer. Advanced ment complications from Brachy- 7 13% Treatment Complications therapy were reported to be low Respondents were asked to indicate with no high severity complications if they suffered any complications being listed. from their treatment, to which 76% Thanks go to Doug Gray for putting the said yes and 24% said no. Respon- questionnaire together and producing dents were also asked to indicate the analysis. This is only part of a fuller Locally Localised 5 page report. For the full report email: Advanced 29 the type of complication and its 18 54% 33% severity with a score of 1 being low [email protected]

7 National Cancer Patient Information Pathways & Prescriptions

Mansion House Chambers Background – The Department of Health (DH) white paper, “Our 22 High Street, Stockport health, our care, our say” published in January 2006, made a commit- Cheshire SK1 1EG ment to improving access to appropriate information for people with Tel: 0161 474 8222 health and social care needs. It stated: “we propose that services give Charity No. 1123373 all people with long-term health and social care needs and their carers an ‘information prescription’. Federation Trustees Information Prescriptions will be nationally recognised as a source of Officers: key information on services and care – seamlessly and formally Chairman: Sandy Tyndale-Biscoe integrated into the care process. Secretary: Mike Lockett Identifying the need – the National Audit Office provided survey Treasurer: Hugh Gunn figures from 2004 showing Trustees: Graham Fulford,  40% of cancer patients did not receive any information at the time John Dwyer, Roger Bacon, they were diagnosed David Smith, Rob Banner  20% did not receive information on discharge Volunteers for Most lacked access to advice on financial benefits for support during illness Roles and Functions European Representative: Target – to empower patients to fully understand their cancer and Mike Lockett be involved in decision making and choices of care. Patients to have Medical Advisor: face to face communication with professionals and receive high David Baxter-Smith quality tailored information at key points in their cancer journey, Newsletter Editor: written in plain language. Information, stored online, will be given Roger Bacon Grants Secretary: when needed at every point in the care pathway and patients and Sandy Tyndale-Biscoe carers are able to ask for and choose what information to receive at Fund Raising/Sponsorship: every stage and in every encounter with a professional. Rob Banner Website Maintenance: Collection of Information – all 30 cancer networks across Sandy Tyndale-Biscoe were asked to supply their local information pathway plans Helpline Coordinator: for the identified cancers. These were compared to identify common- John Coleman ality along with areas where little/no information is given out. Using Development/Recruitment: web search, tumour specific charity information and general charity Graham Fulford Membership Secretary: search, material was identified that could be used to support the Alan Ashmole mapped content for each cancer. Publicity/PR: - VACANT Delivering the Information – frontline cancer health Representatives on professionals such as Clinical Nurse Specialists will be responsible for National groups delivering to the patient tailored information prescriptions. Having NCRI; PCAG; PCCA; NICE - identified what stage the patient’s cancer is, the CNS will access the David Smith / John Dwyer web-based system so that the agreed patient information content can Political Liaison be selected and printed electronically to generate tailored Dr Tom Stuttaford personalised information prescriptions, given to the patient in a Education/Research wallet. Additional printed booklet/leaflet information will also be Coordinator available to the CNS to give to the patient. John Dwyer The future – access to the system will be available at libraries, medical centres and dedicated clinics. It is hoped that eventually Prostate Matters is published four times a year. It provides news, information, patients and their carers will be able to access their own personalised personal memoir and opinion about care programme by ‘logging-on’ to a secure area of the information prostate cancer. It also reports, quotes and cites published medical views and website. research findings about prostate problems. Anyone who wishes to embark on any Now - the system goes ‘live’ in the spring 2010. dietary, drug, exercise or other lifestyle Roger Bacon change intended to prevent or treat a specific disease or condition should first www.prostatecancerfederation.org.uk consult with and seek clearance from a qualified health care professional. e mail: [email protected]

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