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: info@prostatescotland.org.uk 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 volunteer@prostatescotland.org.
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’.
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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