PS-31165-Spring Newsletter 2014_JC.indd
Transcription
PS-31165-Spring Newsletter 2014_JC.indd
News in brief November 2013 saw the long awaited announcement that the Scottish Medicine Consortium (SMC) had approved Enzalutamide for use in the NHS in Scotland. Enzalutamide (brand name Xtandi®) is for the treatment of those men diagnosed with metastatic castrate resistant prostate cancer. The SMC decided to approve the drug following a Europe-wide trial which found that the drug reduced the risk of death by 37% and for many men improved their quality of life. It was announced in November that a new combination drug had been licensed in the UK to treat lower urinary tract symptoms in men. Vesomni, is a fixed-dose combination of antimuscarinic solifenacin and alpha blocker tamsulosin and is taken once a day. Both of these drugs are already established treatments for men with benign prostatic hyperplasia (BPH). In December, it was reported that scientists have discovered a protein that could trigger the body’s own immune system to fight prostate cancer. Nottingham and Trent University scientists have focused on the protein, prostatic acid phosphatase (PAP) which may stimulate the body’s own mechanism to attack prostate tumour cells. PAP is found in ninety percent of prostate tumours. The research centre director, Professor Robert Rees was quoted as saying he hoped the work would lead to a clinical trial. Two very different stories emerged in January on the benefits of having sufficient sleep at night and walking at a fast pace for men with prostate cancer. A study on Icelandic men linked higher levels of the night-time hormone melatonin with a 75% reduced risk of advanced prostate cancer. In the other study, researchers found that men who walked at a fast pace before diagnosis of prostate cancer had tumours containing larger and more regularly shaped blood vessels which scientists believe may inhibit cancer aggressiveness and encourage better responses to treatment. Another new drug Radium – 223 Di chloride(Xofigo®) for men with advanced ‘castrate resistant’ prostate cancer who are no longer responding to conventional hormone therapy has been launched in the UK but has not yet been approved by SMC or NICE. Xofigo selectively targets places where cancer has spread to the bones and in high doses its alpha particles kill tumour cells by destroying their DNA. Recent research by Prostate Cancer UK found that only 4% of GPs in Scotland initiated discussions about prostate health with men over 50 who were not showing any symptoms of prostate cancer but due to their age had an increased risk. For men under the age of 50 Making awareness work in the workplace For the past 6 months the Prostate Scotland Workplace Toolkit has been very much in demand from businesses and organisations the length and breadth of Scotland. Many of these firms have since gone on to run awareness initiatives with their employees. The type of initiative has varied with each business or company and we are in the fortunate position to tailor what we can offer to each organisation. Many organisations have chosen to have a staffed display stand as part of a wider health and wellbeing event, others having only prostate information available and some have opted for employees being offered the opportunity to attend our ‘Workplace Toolbox Workshop’. We have worked with NATS in Glasgow and Prestwick, Diageo, HMRC, LendLease, Moredun, and Morgan Sindall amongst others. Whatever the method, the feedback from workplaces has been extremely encouraging with many firms reporting that some employees had visited their GP after recognising symptoms. The high demand for the Toolkit has almost exhausted our supplies so the Toolkit has been reviewed and revised and we hope to have the updated copy available this summer. newsletter without symptoms but who had an increased risk due to family history only 11% of GPs started discussions with men about risk. A team of researchers at Edinburgh University have found that the unwanted side-effects of chemotherapy could be minimised by a technique of implanting the metal palladium directly into tumours. The scientists found that they could alter the chemical composition of chemotherapy drugs to make sure they cannot become active without coming into contact with the palladium, activating the drugs in the areas where they are needed so easing the side-effects of hair loss, fatigue and nausea. However, Dr Asier Unciti-Broceta stated that it would be several years before they were able to start treating patients. At the Prostate Cancer World Congress held in Melbourne in 2013, a multidisciplinary group of the world’s leading experts have sought to deal with the many conflicting guidelines and recommendations about prostate cancer screening and early detection by producing a set of five consensus statements. The aim of these statements is to provide clear guidance for clinicians counselling their patients about the early detection of prostate cancer. More information can be found in the BJU International 2014; 113: 186-188 Information and Advice Project Towards the end of last year, Prostate Scotland launched their new Telephone Information Service. This telephone service offers men and their families the opportunity to call us for information on prostate disease and prostate cancer, signposting these men to additional appropriate sources of information and signposting to organisations which deal with support and counselling. Our service does not offer medical advice or provide a support service. The service is available all day Tuesday and Wednesday afternoon. The number is 0300 666 2036, the advantage being that calls will cost callers the same as calls to any phone numbers starting with 01 or 02. Prostate Scotland Patron: Sir Tom Farmer CVO CBE KCSG DL Chairman: Robert Wilson Trustees: Dr Anna Gregor CBE, Mary Hallam, Alan McNeill. Alan McLaren, Alison McNeill, James Thomson OBE, Dr David Bilsland. Contact us at 6 Hill Street, Edinburgh EH2 3JZ Tel 0131 603 8660 Email: [email protected] or visit our website at www.prostatescotland.org.uk Prostate Scotland is a charity registered in Scotland (SC037494) with its registered office at Princes Exchange, 1 Earl Grey Street, Edinburgh EH3 9EE. prostatescotland.org.uk inform • support • advance Issue No 12 Spring 2014 Blue Horizon Robot Appeal launched Prostate Scotland has launched the Blue Horizon Appeal to raise funding for Scotland’s first robot for robot-assisted prostate cancer surgery. other treatment choices. The robot will be donated to the NHS to provide an excellent service in a central location in Scotland which is easy to reach for both patients and staff. We are working with the NHS in Scotland, the urological community and patients to agree the most appropriate place for the robot. Dr Anna Gregor CBE Prostate Scotland Trustee and former Lead Cancer Clinician for Scotland stated: The appeal was launched at a special reception at the National Museum of Scotland attended by guests from across Scotland, including Sir Tom Farmer the charity’s Patron, and rugby star Chris Paterson. The event included the launch of a special video about robotic assisted prostate surgery, presented by broadcaster and actor Grant Stott and directed by Hamish Campbell. In Scotland there are a number of treatments available for prostate cancer, including surgery, radiotherapy, brachytherapy and hormone treatment. Robotic assisted surgery for prostate cancer has become a common method of choice in England, much of Europe and the United States – where nearly 70% of all prostate cancer surgery is now undertaken robotically. The appeal will enable men with prostate cancer living in Scotland to have access to the latest appropriate surgical treatment, without having to travel outwith Scotland. Robotically assisted surgery is performed by a surgeon operating a robot, utilising keyhole technology. During the procedure the surgeon sits close to the patient, remotely operating the four surgical ‘arms’ of the robot from a console. The surgeon views the operation through a video monitor. Robotics allow a level of surgical precision that is not available in standard keyhole surgery, making complex manoeuvres easier to perform. Responding to demands from patients and clinicians in Scotland, Prostate Scotland decided to look to develop an appeal to raise the funding for a robot to enable robotic assisted prostatectomy in Scotland, alongside Scotland benefit from the latest technological advances in minimal access surgery and have their care delivered in a high volume centre of excellence. There is clear and strong evidence that having surgery performed in a high volume centre, with a dedicated team of very experienced surgeons offering a minimal access surgical approach is the optimum way to deliver this important treatment for prostate cancer.” ‘Access to and the availability of robot-assisted surgery for prostate cancer in Scotland, alongside other treatments, will be a significant step forward especially when there is a likely increase in the numbers of men diagnosed with prostate cancer. We have consulted widely with patients and doctors across Scotland on this initiative and we have been very encouraged by the very positive response’. Robert Wilson Prostate Scotland Chairman stated: “In our work we are inspired by the dignity of men with prostate cancer and disease, by the commitment of the doctors and nurses treating them and by the hugely encouraging increase in the number of men surviving prostate cancer. Our aim through the Blue Horizon Appeal is to enable men with prostate cancer in Scotland to have access to the latest and most up-todate method of surgery for prostate cancer. A special brochure and film about the appeal has been produced - copies are available from Prostate Scotland or it can be downloaded at www.prostatescotland.org.uk “Together we can bring the horizon closer and see even more men in Scotland surviving prostate cancer, for men across the country to have access to the latest and most appropriate care and treatments available, as well as information and support. We know from our daily contact and engagement with men with prostate cancer and disease how important this is to them and their families.” Prof. Alan McNeill - Prostate Scotland Trustee and Consultant Urological Surgeon said: “The introduction of robot assisted radical prostatectomy will help ensure that men undergoing surgery for prostate cancer in Sir Tom Farmer speaking at the launch British Medical Association Patient Information Awards 2013 Prostate Scotland are delighted to announce that in September 2013, two of our patient information publications were recognised as being amongst the best in the UK, after we received two awards in the British Medical Association Patient Information Awards 2013. ‘Advanced prostate cancer explained’ was awarded ‘Highly Commended’ while ‘BPH and treatments explained’ was ‘Commended’. Prostate Scotland would like to express sincere thanks to all members of our advisory group (PAGES), chaired by Professor Alan McNeill, the many members and specialists in our wider reading group and Edinburgh and Lothians Prostate Cancer Support Group for their very significant contributions to the development of these booklets. Professor Alan McNeill, Rita O’Dea and Mae Bell at the BMA Patient Information Awards ceremony in London. Prostate Scotland is a charity registered in Scotland (SC037494) with its registered office at Princes Exchange, 1 Earl Grey Street, Edinburgh EH3 9EE. prostatescotland.org.uk Thank you to our volunteers Prestonfield Burns Supper Prestonfield, Edinburgh’s famous hotel, held its annual Burns Supper once again in aid of Prostate Scotland. The Prestonfield Burns Supper has become a famed Edinburgh institution and some 340 people enjoyed a special night of traditional and some not so traditional entertainment and wit. The welcome to the evening was given by Prostate Scotland Chairman Robert Wilson and the evening was hosted by actor and broadcaster Grant Stott, George McNeil, former world champion sprinter and footballer, gave the Immortal Memory. Peter Brown offered the Toast to the Lassies and Radio Forth’s Arlene Stuart gave the Reply on behalf of the Lassies. An auction and raffle was held in aid of Prostate Scotland and a magnificent amount of £9,000 was raised on the night. Prostate Scotland would like to thank James Thomson and Prestonfield for their generosity in holding the event in aid of Prostate Scotland. Over the past few months our volunteers and supporters have been very active throughout Scotland. Not only do our volunteers do an invaluable and impressive job in raising funds to enable us to continue our work (as can be seen in our fundraising and supporters news), but many give up their time during the day, in the evening Lodges give Grand Support This has included the opportunity to distribute and communicate information about prostate disease and prostate cancer. Once again Prostate Scotland was honoured to be able to have an exhibition and display of information at the Festival of St Andrew - the Grand Lodge of Scotland’s main annual event. Following the nomination of Prostate Scotland as the Grand Lodge of Scotland’s nominated charity, Prostate Scotland has been delighted to receive significant support from many Provincial Grand, District and Daughter lodges. Focus on the Team Prostate Scotland has recently been joined by three new team members. Ashleigh Ward has joined the team to take forward a joint research project between Prostate Scotland and the Cancer Care Research Centre at the University of Stirling. The project aims to understand the current utilisation of prostate cancer services in Scotland and patient and clinician views on services and treatment needs in the future in Scotland. The reason for the project is the projected rise in incidence of prostate cancer by 48% in Scotland between now and 2020. The project aims to find out what services and treatments may be needed in order to help plan for the future and ensure men’s inform • support • advance Kind donations have been received recently from the Provincial Grand Lodge of Edinburgh, the Provincial Grand Lodge of Lanarkshire Upper Ward, Provincial Grand Lodge of Stirlingshire, Lodge Meigle No 1122, Lodge Heart of Midlothian No 832, Lodge Lord Bruce No 1601, Lodge Breadlabane No 657, Elgin’s Lodge prostate health needs can be met. The project is supported by an advisory group including clinicians from across Scotland, a representative of the Scottish Government’s Chief Scientist Office as well as patient representatives. Ashleigh is undertaking the research as part of a PhD studentship, following a background in cancer research in Dundee. Richard Walker has joined the team, as Appeal and Fundraising Manager to lead the Charity’s fundraising activity and in particular to take forward the Blue Horizon Robot Appeal for Prostate Scotland. In a nutshell this involves raising £1.5 million to provide robot assisted surgery for men with prostate cancer in Scotland. In addition Richard’s role includes looking after the core funding required to run Prostate Scotland – this includes raising the funding to make sure that we can increase the public’s awareness of prostate disease through our literature, the website and the workplace initiative materials. at Leven No91, St Christopher’s Lodge, Lodge St Ternan No443, Lodge St Bryde No 579, Lodge Corkerhill No 1426, Lodge Prince of Wales No 426. In addition kind donations from a number of individuals via lodges have also been received. Prostate Scotland would like to express its sincere thanks to the lodges and individuals involved for their kind and generous support for the organisation's work to raise awareness of prostate disease and prostate cancer.The Provincial Grand Lodge of Lanarkshire (Middle Ward) has also announced that Prostate Scotland and Breast Cancer Care Scotland are to be their nominated charities for 2013-14. Richard’s background is in fundraising consultancy, appeal management and managing teams of fundraisers throughout the UK. He has been employed in the charitable sector for the last 35 years in one or other of these areas. Richard commented; ‘In my first 3 months the pace has never slackened - Prostate Scotland gets through an enormous amount of work on behalf of those affected by prostate disease in Scotland and I’m delighted to be part of the team carrying out that work’. Bart Dignan joined Prostate Scotland in December 2013 as an awareness and fundraising intern. The project has been undertaken with the support of the TSIS project, which is delivered in partnership with Queen Margaret University, SCVO and the Open University in Scotland. His remit covers awareness and fundraising activities with particular emphasis on Forth Valley and Lanarkshire. He is currently studying for a Masters in International Public Policy at the University of Strathclyde. and at weekends to help us raise awareness of prostate disease and prostate cancer directly with men and their families. Their unstinting support enables Prostate Scotland to take forward our awareness work as we are able to attend more events throughout Scotland. We would like to thank; Alasdair Ferguson, John Fulham, Billy Mathieson, Walter Moodie, Alison Walker and Sarah Jane Whalen. If you would like more information about volunteering with us please get in touch Tel 0131 603 8660 or [email protected]. uk Ashleigh Ward and John Fulham at the 50+ Show New publications in the spotlight Prostate Scotland is continuing to add to the new ‘Spotlight on’ series of guides. The purpose of this series is to highlight specific treatments, investigations or care issues. Our first guide in the series on Active Surveillance has proved to be popular and is available in many hospitals throughout Scotland. The guide on prostate biopsy has been extremely well received with some hospitals now sending this guide to patients along with their biopsy appointment letter. and erectile dysfunction’, ‘TURP and laser therapies for an enlarged prostate’, and shortly a guide on ‘Incontinence as a symptom of prostate problems’. These publications are available as a download on our website www. prostatescotland.org.uk or call us and a copy will be sent out. We would like to thank Lesley Barr who organised the Baw Bags Duathlon and all the competitors who raised £5000 which funded the printing of 3 of these booklets. In addition, we now have guides available on ‘Prostate Brachytherapy’, ‘Pelvic Floor Exercises for men’, ‘Prostate Conditions Additional guides currently in development include ‘Caring for your indwelling catheter at home’ and ‘External Beam Radiotherapy for prostate cancer’. TION PROSTATE INFORMA PROSTATE SPOTLIGHT ON PRO STAT TION E INFO RMA HT ON SPOTLIG Prostate Biopsy Incontinence as a symptom of prostate problems Prostate Scotland, Contact Us 6 Hill Street, Tel: 0131 603 Edinburgh 8660 (Choose EH2 3JZ Email: info@prosta option 1 for information ) tescotland.o www.prosta rg.uk tescotland.o rg.uk Date: November 2013 © Prostate Scotland Contact Us EH2 3JZ 6 Hill Street, Edinburgh Us EH2 3JZ Contact k Street Edinburgh land.org.u , Gf, 6 Hill statescot Scotland k Prostate Email: info@pro land.org.u 603 8660 statescot Tel: 0131 www.pro Scotland Prostate r 2013 © Date: Decembe N MATIO itions e cond Prostat and nction fu ys d erectile HT ON SPOTLIG N N PROSTATE INFORMATIO Prostate Scotland, information) (Choose option 1 for nd.org.uk Tel: 0131 603 8660 nd.org.uk www.prostatescotla Email: info@prostatescotla © Prostate Scotland Date: August 2013 OR TE INF PRO STA INFOR MATIO SPOTLIGHT ON Prostate Brachythera py SPOTLIGHT ON Pelvic Floor Exercises for men Contact Us Street, Edinburgh EH2 3JZ Prostate Scotland, 6 Hill option 1 for information) Tel: 0131 603 8660 (Choose Date: November 2013© Prostate Scotland 3JZ t Us rgh EH2 Contac Edinbu Street, 1 for information) d, 6 Hill e Scotlan (Choose optiond.org.uk Prostat 603 8660 rostatescotlan d Tel: 0131 e Scotlan www.p Prostat 2013 © Date: August Genetic Links with prostate cancer Audrey Ardern-Jones, West Lothian Councillor John McGinty and Charlie Hogg of ELPCSG The West Lothian Branch of the Edinburgh and Lothians Prostate Cancer Support Group organised a meeting in Livingston on the latest research into genetics and links with prostate cancer from the UK Genetic Prostate Cancer Study with guest speaker Audrey Ardern-Jones, Royal Marsden Hospital London. In particular, the research is looking at the BRCA 1 and BRCA 2 genes. Men carrying these genes may be at greater risk of Pharmacy Technicians Pharmacies have an important role in getting the message to men and their families about prostate disease and prostate cancer. To help equip Pharmacy Technician students with a basic knowledge and to help them developing prostate cancer whilst those carrying the BRCA 2 gene may be more likely to develop an aggressive form of the disease. Audrey emphasised that the likelihood of carrying these genes is not very high, but identifying men carrying these genes could have implications for targeted screening and earlier diagnosis. Men concerned might wish to discuss with their doctor about the possibility of referral to a genetics department. understand issues when dealing with men with prostate disease, Prostate Scotland worked in partnership with Edinburgh College, Granton Campus to deliver a short seminar on prostate disease and prostate cancer and informed students of Prostate Scotland resources available. It is hoped that this partnership will continue and potentially expand next year. Donations Prostate Scotland would like to thank the following for recent kind donations: Aberdour Bowling Club; Friends of Waverley Bar, Dumfries; staff from the Scottish Legal Aid Board; Leven Parish Women’s Group; 31st Edinburgh (South Queensferry) Boys Brigade Company; Armadale Academy; Bernard Williams; Clyde Valley Section of the Vintage Motorcycle Club; Mrs Cook; Denis and Ann Cramond, Henry Robertson; Shotts Rotary Club; Order of the Eastern Star Pinkie Chapter No. 79; Dalgety Bay Bowling Club; Mr R. C. Callander; Robert Foggo; Robert Aiton; Gordon Spiers; Robert and Andrea Wemyss; Richard Findlay; Fiona Wilkinson; J. Kennedy; William Prentice. Congratulations to Lorna Stewart and Barry Robertson on their recent wedding. Thanks to Lorna and Barry and their friends for kindly sending donations to Prostate Scotland in lieu of wedding gifts. We have recently received several donations ‘in memoriam’ from families and friends who have lost loved ones. We would like to express our sympathy and acknowledge these generous donations. prostatescotland.org.uk
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