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Tackle Trustee Keith Cass explains why he is selling tickets to his own funeral

Tackle Trustee Keith Cass' funeral will be different to most people's. He's selling tickets for it to raise awareness and funds for research into prostate cancer.

Read more about this and listen to Keith talk about his idea on ITV.

Blue November in Italy is a new prostate cancer awareness campaign

Europa Uomo is promoting Blue November, Italy’s first prostate cancer awareness campaign, with the slogan: “Shine a light on yourself”.

They have decided to use art as a powerful means of instantly getting a message across about men’s health, by shining blue lights on male nude statues.

To find out more about the numerous initiatives, please take a look at www.novembreazzurro.it which is available in both English and Italian.

Tackle supports Stephen Fry Appeal for more research into advanced prostate cancer

BBC Radio 4 Appeal

Here is a note for your listening diary!  On Sunday 16th December at 07.55 repeated on Thursday 20th December at 15.27  please tune in to hear the Stephen Fry and Martin Dallison appeal asking for more research into advanced prostate cancer.   This is being organised by the Prostate Cancer Research Centre, with whom we will be working more closely going forward. 

The attached pdf gives more details.  If you would like paper copies of the appeal please email Sonja at slawrence@prostate-cancer-research.org.uk

Prostate cancer: A wake-up call for men

Tackle Chairman Roger Wotton has an article published on the Open Access Government website discussing whether men should be screened for prostate cancer.

Read it here.

From death's door to the all-clear from Prostate Cancer

Michael English is living evidence that we may finally have discovered a powerful secret to beating cancer. Astonishingly, this long-sought answer lies hidden inside our own bodies.

Read the full story in the Daily Mail.

Prostate breakthrough with simple blood test could spare thousands of men from surgery and radiotherapy

Necrotising Fasciitis (flesh-eating bug) after routine Prostate Surgery

Gel implant can spare prostate patients the side-effects of radiotherapy

A new treatment for prostate cancer uses a gel implant to stop healthy cells being damaged by radiotherapy. Gordon Robinson, 70, a former electrical wholesaler, from Dungannon, Co. Tyrone, was one of the first UK patients to be given it.

Read the full report in the Daily Mail.

New drug that unleashes the body's immune system could eradicate 'ultra-mutant' tumours in men with drug-resistant prostate cancer

Men with aggressive drug-resistant prostate cancer could see their tumours eradicated by a new treatment.

Read the full report in the Daily Mail.

Inspirational Woman From Yorkshire Dales Raises over £400 at a Bag Packing Day at Tesco Store in Skipton

29 year-old Kayleigh Davies from Skipton is one determined lady. To raise awareness for Tackle Prostate Cancer, she organised a bag pack day at the Tesco store in Craven Street in Skipton last weekend raising over £400.

In total she has now raised over £2,122 and still has lots more fundraising events and swims to go as well as organising a Charity Ball on 13 October in Skipton. Kayleigh has been inspired by two of her father's friends who have prostate cancer to raise awareness.

Tackle Prostate Cancer is a patient-led charity addressing the real issues people face when they are diagnosed with prostate cancer, and helping people to cope with their diagnosis and treatment. As a National Federation, Tackle has 90 support groups across the country, representing some 15,000 members.

Kayleigh said: "I am organising a ball and doing swims for Tackle Prostate Cancer because I have seen the effects of this disease. Men are dying daily because they are not routinely checked by GPs for prostate cancer."

In June Kayleigh attempted to swim the English Channel as part of a four person relay team. Up until two years ago Kayleigh could hardly swim as she suffers from an auto-immune condition, which means she is in constant pain as well as making her prone to chest infections. Kayleigh was diagnosed with sarcoidosis when she was eight years old which can affect any part of the body.

Kayleigh has taken part in open water swims throughout the summer including a 5K swim in London and the Dee swim.

Kayleigh added: "I have personally seen the effects of this devastating disease as it has affected friends and family and believe that it is important that we do everything that we can to fight and 'tackle' the illness."

Tackle have recently launched their inaugural national cycling event ‘Cycle to the Moon, Save a Dad’ – a major fundraising initiative that will encourage people of all ages to get on their bikes and raise awareness and  money for the fight against prostate cancer.

Cycle to the Moon is a chance for members of the public to show their support through their cycling miles either on the roads, in the gym, at home or on outdoor trails. The event is open to all ages regardless of ability. It is designed to be a fun, healthy activity raising funds on behalf of Tackle Prostate Cancer as well as encouraging the next generation to participate. It also aims to raise awareness and encourage men at risk of prostate cancer to get tests and earlier diagnosis. The campaign’s target is £250,000 –  £1 for every mile between Earth and the Moon.

Prostate cancer is now a bigger killer than breast cancer, making prostate cancer the third biggest cancer killer in the UK. Every penny Kayleigh raises will make a difference, lives will be saved and more people will be aware of the need to be tested. The money will help the charity continue to meet its objectives of campaigning on behalf of patients and raising awareness in the community.

Kayleigh has set up a Just Giving page and Facebook page for her swims.

Roger Wotton chairman of Tackle Prostate Cancer says: "We know how devastating the diagnosis of prostate cancer can be. Raising awareness will hopefully see more men being tested earlier, and help accelerate a reduction in mortality figures. Prostate cancer doesn’t just affect the man diagnosed – it affects his whole family." Kayleigh is a true inspiration to others she and she deserves all our support. Go girl!"

Kayleigh added: "I would swim all around the world to make a difference and help raise awareness."

To sponsor the Kayleigh's swimming challenge visit http://www.justgiving.com/kayleigh-davies6?utm_id=124

Exploring prostate cancer key issues

Roger Wotton, Chairman of Tackle Prostate Cancer explores the key issues around prostate cancer, the most common cancer in men.

Read the full article.

Clinical Advisory Board Member Chris Booth Update on Prostate Cancer Screening

AN UPDATE ON PROSTATE CANCER SCREENING

Bad News - Good News 

First, the bad news.

An update is necessary because the UK still has unacceptable Prostate Cancer statistics with over 47,000 new cases and over 11,800 deaths each year, which now exceed deaths from breast cancer.  Our cure rates languish below most of our European neighbours despite us having one of the richest economies in the world.   Despite this there is no central impetus towards better screening for this cancer which is eminently curable if caught early.  This is because the so-called “harms” of screening for early, curable prostate cancer - ”over-diagnosis” of insignificant non-aggressive cancer and its attendant risk of unnecessary ”over-treatment” – continue to be cited as reasons for discouraging men from having PSA tests.  This advice is now outdated and italso overlooks the serious risk of “under-diagnosis” of aggressive and potentially lethal prostate cancer.

Furthermore, in the USA the death rate from prostate cancer has fallen by about 4% a year since the introduction of PSA testing in the 1990s – until now!   Since the US Preventive Services Task Force (USPSTF) controversially discouraged the use of PSA screening in 2012, this steady reduction in mortality has levelled off and, more worrying, the incidence of incurable late stage disease and metastatic spread is now rising in the USA.

Now, the good news.

Pioneering studies in the UK on the use of mpMRI scanning for suspected prostate cancer in men with an elevated PSA have demonstrated a marked superiority over the traditional TRUS biopsy pathway. The PROMIS trial has confirmed that an initial mpMRI reduces by at least 25% the need for biopsy and hence over-diagnosis of insignificant cancer whilst increasing the detection of significant prostate cancer when combined with targeted biopsies.  Consensus guidelines are now establishing the criteria for the reliable use of mpMRI as the optimum diagnostic test prior to possible biopsy in men with an elevated PSA.

As well as mpMRI new biomarkers are being used to predict the need and likelihood of finding significant prostate cancer on biopsy.

PSA is present in the blood in multiple forms, some of which are more cancer-specific.  For instance, our charity CHAPS routinely uses the ratio of Free PSA to Total PSA to flag up the likelihood of significant prostate cancer in men with PSAs of 4-10ng/ml.

The Prostate Health Index and Prostate Cancer Antigen 3 already have approval in the USA for prediction of high risk prostate cancer on biopsy and at least 4 other biomarkers are under study with similar objectives.

Regarding “over-treatment” of non-aggressive, insignificant prostate cancer, the UK rate for this is down to 8% and continues to fall.  Active surveillance has now replaced over-treatment which can no longer be considered a major obstacle to screening.

What are the messages for the UK if we accept that our current outcomes for prostate cancer management are unacceptably poor for a wealthy western nation?

Firstly, the above information makes it clear that we cannot accept at face value statements from authoritative bodies such as the USPSTF which highlight the “harms” of screening but fail to mention the benefits;  long term European PSA-based screening programmes are showing falls in mortality of over 40% and GPs should be made aware of this.

Secondly, UK men need to know the risk posed by prostate cancer in exactly the same way as women and breast cancer.  When men request a PSA test, GPs need to know about the advances the UK has made in diagnosis and the reduction of over-treatment through active surveillance.  Only then can they provide balanced counselling that allows individual men to make an informed decision on when to have a first PSA test, how often to repeat the test and when it is safe to stop screening.  It should be noted that a single PSA is of little value and does not constitute a programme.  Most current programmes now recommend screening from  40s -75 with frequency of testing based on risk.

For the moment PSA remains the only simple, cheap screening test.  If we are to make any immediate inroads into our unsatisfactory death rate from this most pernicious cancer, it is essential that we increase PSA-based screening and learn how to use this valuable marker properly.

Chris Booth, MBBS, FRCS
Consultant Urologist (retired)

Inspirational Woman from Yorkshire Dales has raised over £1000 For Tackle and has more planned

29 year-old Kayleigh Davies from Skipton is one determined lady to raise awareness for Tackle Prostate Cancer. She has raised over £1000 to date and still has lots more fundraising events and swims to go. Kayleigh has been inspired by two of her father's friends who have Prostate cancer to raise awareness.

Tackle Prostate Cancer is a patient-led charity addressing the real issues people face when they are diagnosed with prostate cancer, and helping people to cope with their diagnosis and treatment. As a National Federation, Tackle has 90 support groups across the country, representing some 15,000 members.

Kayleigh said: "I am organising a ball and doing swims for Tackle Prostate Cancer because I have seen the effects of this disease. Men are dying daily because they are not routinely checked by GP's for prostate cancer."

In June Kayleigh attempted to swim the English Channel as part of a four person relay team. Up until two years ago Kayleigh could hardly swim, she suffers from an auto-immune condition which means she is in constant pain as well as making her prone to chest infections. Kayleigh was diagnosed with scarcodosis when she was eight years old which can affect any part of the body.

Kayleigh has taken part in open water swims throughout the summer including a 5K swim in London and the Dee swim.

Kayleigh added: "I have personally seen the effects of this devastating disease as it has affected friends and family and believe that it is important that we do everything that we can to fight and 'tackle' the illness."

Tackle have recently launched their inaugural national cycling event ‘Cycle to the Moon, Save a Dad’ – a major fundraising initiative that will encourage people of all ages to get on their bikes and raise awareness and  money for the fight against prostate cancer.

Cycle to the Moon is a chance for members of the public to show their support through their cycling miles either on the roads, in the gym, at home or on outdoor trails. The event is open to all ages regardless of ability. It is designed to be a fun, healthy activity raising funds on behalf of Tackle Prostate Cancer as well as encouraging the next generation to participate. It also aims to raise awareness and encourage men at risk of prostate cancer to get tests and earlier diagnosis. The campaign’s target is £250,000 –  £1 for every mile between Earth and the Moon.

Prostate cancer is now a bigger killer than breast cancer, making prostate cancer the third biggest cancer killer in the UK. Every penny Kayleigh raises will make a difference, lives will be saved and more people will be aware of the need to be tested. The money will help the charity continue to meet its objectives of campaigning on behalf of patients and raising awareness in the community.

Kayleigh has set up a Just Giving page and Facebook page for her swims.

Roger Wotton chairman of Tackle Prostate Cancer says: "We know how devastating the diagnosis of prostate cancer can be. Raising awareness will hopefully see more men being tested earlier, and help accelerate a reduction in mortality figures. Prostate cancer doesn’t just affect the man diagnosed – it affects his whole family." Kayleigh is a true inspiration to others she and she deserves all our support. Go girl!"

Kayleigh added: "I would swim all around the world to make a difference and help raise awareness."

To sponsor the Kayleigh's swimming challenge visit

http://www.justgiving.com/kayleigh-davies6?utm_id=124

Passengers and Crew of the Saga Sapphire ship hold a ‘beat the ship’ cycling event for Tackle

Officers, Crew and passengers of the Saga Sapphire participated in a charity bike ride raising £6,000 for Tackle's inaugural national cycling event Cycle to the Moon, Save a Dad a major fundraising initiative that will encourage people of all ages to get on their bikes and raise awareness and  money for the fight against prostate cancer.

Cyclists participated in the charity bike ride called 'Beat the Ship' by the Kiel Canal in Germany.

The cyclists disembarked at the Holtenau locks near Kiel and then headed off for the 110km ride to try and beat the ship to the Brunsbuttel Locks at the western end of the Kiel Canal. Guests were out on deck to watch the race start whilst 30 from the ships company and 7 guests also participated in The Verandah bike ride.

Captain Julian Burgess Master Saga Sapphire said: " A couple of cruises ago one of our guests shook my hand as he entered the Britannia lounge for a party and I noticed his lapel badges and particular a little grey/black mottled man. Having asked what is was he told me it was called "Men United" and was associated with the charity Prostate Cancer UK.  During that "warm" discussion he told me about a National Federation called "Tackle Prostate Cancer" which only exists due to the work of the Volunteer support groups which represent about 15,000. The Federation achieved charity status in 2008 and in 2013 the Tackle Prostate Cancer campaign was launched. What has impressed me is that this small charity relies completely on volunteers and this has really "resonated" such that I am very keen to support "tackle". I have since been given permission by the Saga Charitable Trust to include Tackle as one of their recognized charities."

Cycle to the Moon is a chance for members of the public to show their support through their cycling miles either on the roads, in the gym, at home or on outdoor trails. The event is open to all ages regardless of ability, it is designed to be a fun, healthy activity raising funds on behalf of Tackle Prostate Cancer as well as encouraging the next generation to participate. It also aims to raise awareness and encourage men at risk of prostate cancer to get tests and earlier diagnosis. The campaign’s target is £250,000 –  £1 for every mile between Earth and the Moon.

Captain Julian Burgess Master Saga Sapphire added: "I have been thinking about some charity work for several years but nothing had quite "grabbed me" until now. One of the key things I like about this charity is that it is run by volunteers with no-one taking large salaries, and we've all heard of those!! The ladies have been very good in raising awareness for breast cancer, but us men don't like talking about personal things like prostate. Well I am now on a mission to raise awareness and what better place to start than Saga Sapphire. The Kiel Canal challenge fits in perfectly with the "Tackle" campaign  "Cycle to the Moon - Save a Dad", with myself being a father to two beautiful girls aged 12 & 14. "Tackle are trying to raise £250,000, to raise awareness of prostate cancer and encourage more men to have the PSA blood test."

Roger Wotton chairman of Tackle Prostate Cancer says: "We know how devastating the diagnosis of prostate cancer can be.  Raising awareness and funds through this  campaign will hopefully see more men being tested earlier, and help accelerate a reduction in mortality figures. Prostate cancer doesn’t just affect the man diagnosed – it affects his whole family."

Leicester Black Community talk about prostate cancer - see the video

The risk in the UK of being diagnosed with prostate cancer is 1 in 8. For black men, the risk increases to 1 in 4.

Tackle member PROSTaid based in Leicester has produced a video in consultation with the local African and African-Caribbean community to underline the importance of black men having regular checks for prostate cancer. 

Watch the video.

New Saliva Test does not supersede PSA Testing

Tackle's Clinical Advisory Board has reviewed the new saliva test announced last week and concluded that we still need PSA testing at the moment. The full statement is:

Articles in the press and broadcast on 12 June 2018 suggested this was an exciting new test for Prostate Cancer (PCa) that could “revolutionise how men are screened” and “lead to a national screening programme on the NHS within 3 years”. Whilst the test clearly helps predict future risk of PCa, the actual conclusions drawn in the research paper itself are more realistic (Nature Genetics, accessed on line 15 June 2018).

In summary, the authors claim the test “can be used to improve the identification of men at high risk for PCa and therefore inform PSA guidelines for screening and management to reduce the burden of over-testing”. Two issues immediately arise:

  1. The above quote suggests the authors clearly see the saliva test working in tandem with PSA. This is logical as we are already able to use PSA as a useful risk predictor when used in men in their forties and fifties.
  2. The vast majority of men presenting with PCa in the UK have no known risk factors, either racial or familial. It therefore remains for future studies to demonstrate how the test can best be fitted into pragmatic, simple, cheap screening protocol, especially if it is to be used like PSA in primary care.

In conclusion, for the moment we have to remain committed to raising awareness and increasing the utility of PSA-based screening if we are to reduce the UK’s unacceptable 11,800 annual death rate from this most pernicious cancer.

Inspirational Woman from Yorkshire Dales Swims English Channel to raise awareness for Tackle

29 year-old Kayleigh Davies from Skipton is getting ready to swim the English Channel to help a cause close to her heart. Kayleigh has been inspired by two of her father's friends who have Prostate cancer to raise awareness for Tackle Prostate Cancer. Kayleigh is also putting on a ball on 13th October in Skipton.

Kayleigh said: "I am swimming the channel and organising a ball for Tackle Prostate Cancer because I have seen the effects of this disease. Men are dying daily because they are not routinely checked by GP's for prostate cancer."

Despite suffering from Auto Immune Disease Kayleigh has been training daily for the last two years to undertake the swim of her life time. It is anticipated swimming the Channel will take 17-20 hours to complete. As a warm up Kayleigh took part in the Lake Windermere 5k Race on 10th June and will also be taking part in the One Way Windermere on 2nd September. Kayleigh is prone to chest infections and gets sick in the sea which makes this even more challenging. She will be doing further sponsored open water swims over the summer culminating in swimming the English Channel as part of a 4 person relay team called North Yorkshire Dolphins on 20th June. Accompanying Kayleigh will be Adrian Hawley from Huddersfield, Mark Seddon from Ilkley and Zobair Hussain from Skipton.

Kayleigh added: "I have personally seen the effects of this devastating disease as it has affected friends and family and believe that it is important that we do everything that we can to fight and 'tackle' the illness."

Tackle Prostate Cancer is a patient-led charity addressing the real issues people face when they are diagnosed with prostate cancer, and helping people to cope with their diagnosis and treatment. As a National Federation, Tackle has 90 support groups across the country, representing some 15,000 members.

Tackle have recently launched their inaugural national cycling event ‘Cycle to the Moon, Save a Dad’ – a major fundraising initiative that will encourage people of all ages to get on their bikes and raise awareness and money for the fight against prostate cancer.

Cycle to the Moon is a chance for members of the public to show their support through their cycling miles either on the roads, in the gym, at home or on outdoor trails. The event is open to all ages regardless of ability. It is designed to be a fun, healthy activity raising funds on behalf of Tackle

Prostate Cancer as well as encouraging the next generation to participate. It also aims to raise awareness and encourage men at risk of prostate cancer to get tests and earlier diagnosis. The campaign’s target is £250,000 – £1 for every mile between Earth and the Moon. Prostate cancer is now a bigger killer than breast cancer, making prostate cancer the third biggest cancer killer in the UK. Every penny Kayleigh raises will make a difference, lives will be saved and more people will be aware of the need to be tested. The money will help the charity continue to meet its objectives of campaigning on behalf of patients and raising awareness in the community.
Kayleigh has set up a Just Giving page and Facebook page for her swims.

Roger Wotton chairman of Tackle Prostate Cancer says: "We know how devastating the diagnosis of prostate cancer can be. Raising awareness will hopefully see more men being tested earlier, and help accelerate a reduction in mortality figures. Prostate cancer doesn’t just affect the man diagnosed – it affects his whole family. This is a fantastic challenge Kayleigh has set herself. A true inspiration to others she and she deserves all our support. Go girl!" Kayleigh added: "I would swim all around the world to make a difference and help raise awareness."

To sponsor Kayleigh's swimming challenge, visit her fundraising page.

Four in ten cases of prostate cancer diagnosed late

Male cancer charity and Tackle Partner Member Orchid report today that four in ten cases of prostate cancer are diagnosed late.

Read the full story here.

Tackle takes issue with the British Medical Journal

A recent issue of the British Medical Journal (BMJ)  - read widely by GPs - had an article about the outdated US PIVOT trial. Fortunately, Chris Booth - who is on our Clinical Advisory Board - saw it and responded as follows:

"Quoting from the USA's PIVOT trial on Prostate Cancer (PCa) is another example of conclusions
being drawn from an outdated American study that is completely inelevant so far as current UK
urological practice is concerned. Worse still, it deflects GPs from giving balanced information to men
quite righly seeking PSA screening for PCa. Anyone wishing for an objective understanding of the
flaws in PIVOT should read D'Amico's "Long-term Follow-up of PIVOT Argues for lmmediate
Treatmenl of Men With Unfavourable-Risk and Possibly High-Volume, Low-Risk Prostate cancer".

"So far as UK practice is concerned, those seeking to give unbiased, objective, up-to-date
information on screening should note the substantial falls in PCa mortality - over 40% - achieved in
European screening programmes (eg Gothenburg and Rotterdam) compared with our dreadful annual
mortality of over 11,800 men. Furthermore, what does deserve publicity are the highly acclaimed UK
results from the PROMIS, PRECISION and ProtecT studies. These, together with the results of the
4th Nationat Prostate Cancer Audit, have demonstrated that the "harms" of PCa screening - "overdiagnosis and over-treatment" - have been largely overcome in current UK clinical practice.
The audit shows that there is a widening gap between our high mortality/poor screening statistics and
the excellent care now available to men lucky enough to have screen-detected, early, curable PCa. lt
also sadly confirms that over 50% of UK men still present with advanced and probably incurable PCa,
16% with metastases.

"The conclusion has to be that in the absence of better options, application of PSA screening
according to accepted national and international guidelines for properly informed men is the best way
we can lower our unacceptable death rate for this thoroughly unpleasant cancer."

We are very grateful for Chris' help.

Roger Wotton discusses prostate cancer on Dacorum radio

Tackle Chairman Roger Wotton was interviewed this evening on Radio Dacorum this evening.

It was a great session and Roger talked about prostate cancer symptoms, local PSA testing, our new campaign "Cycle to the Moon and Save a Dad", other partners we work with like Graham Fulford and Orchid, media stories and a few personal observations.

Listen to the interview here. It starts 6 minutes and 20 seconds in. (You may find it easier to download it and listen but it is 34Mb in size).

Access to Cancer Medicines Coalition calls for patient safeguarding during Brexit

Tackle Prostate Cancer has joined forces with other national cancer charities and patient representative organisations in calling for the interests of people affected by cancer to be safeguarded throughout the second phase of Brexit negotiations.

In a letter to Jeremy Hunt MP, Health Secretary and Greg Clark MP, Business Secretary, the Access to Cancer Medicines Coalition has warned that we must ensure the UK retains prompt access to the most innovative cancer treatments and the ability to collaborate on the development of new drugs through clinical trials.

The Coalition stated to Ministers that EU-UK regulatory alignment is critical if we are serious about improving outcomes for people affected by cancer in the UK.

Yesterday, Brexit negotiators negotiators Michel Barnier and David Davis agreed on a "large part" of the agreement that will lead to the "orderly withdrawal" of the UK. Tackle Prostate Cancer and the Access to Cancer Medicines Coalition will continue to raise awareness of these issues, ensuring prostate cancer patients and their families do not fall between the cracks of any transitional period agreements.


About the Access to Cancer Medicines Coalition

The Access to Cancer Medicines Coalition (ACMC) brings together 24 cancer charities and patient representative organisations. Its aim is to ensure that cancer patients have timely access to the most clinically effective medicines for their condition on the NHS, and using our combined knowledge, experience and contact with people affected by cancer we will ensure that the patient voice is strongly heard in both public conversations and official decision-making relating to access.

Tackle Takes Issue with Cancer Research UK

Cancer Research UK published yesterday an article about how a one-off PSA test for prostate cancer is doing men more harm than good and does not save lives.

Tackle Chairman Roger Wotton commented: "The PSA test is the only test men have today. It's not perfect, but what we need is a more informed approach to PSA testing on the part of GPs and a realisation that today's clinical  practices do not result in overdiagnosis and overtreatment as was the case many years ago. The problem is,  if men wait until they ahave symptoms before they ask for a test, some 30 per cent will already have some form of advanced cancer. Yes, one PSA test can be inconclusive but what's important is the change in PSA levels. So we need a series of tests properly supported and counselled by GPs. Until a more definite test comes along, let's not deny men a chance to avoid this terrible disease".

If you agree with Roger, please comment on Cancer Research UK's article.

 

Tackle launches inaugural campaign 'Cycle to the Moon' to help raise awareness of prostate cancer

Tackle Prostate Cancer, the voice of prostate cancer patients and their families in the UK, has today announced their inaugural national cycling event ‘Cycle to the Moon, Save a Dad’ – a major fundraising initiative that will encourage people of all ages to get on their bikes and raise awareness and  money for the fight against prostate cancer.

Cycle to the Moon is a chance for members of the public to show their support through their cycling miles either on the roads, in the gym, at home or on outdoor trails from  now to the end of June 2018. The event is open to all ages regardless of ability. It is designed to be a fun, healthy activity raising funds on behalf of Tackle Prostate Cancer as well as encouraging the next generation to participate. It also aims to raise awareness and encourage men at risk of prostate cancer to get tests and earlier diagnosis. The campaign’s target is £250,000 –  £1 for every mile between Earth and the Moon.

Roger Wotton chairman of Tackle Prostate Cancer says: "We know how devastating the diagnosis of prostate cancer can be.  Raising awareness and funds through this  campaign will hopefully see more men being tested earlier, and help accelerate a reduction in mortality figures. Prostate cancer doesn’t just affect the man diagnosed – it affects his whole family."

Tackle Prostate Cancer is a patient-led charity addressing the real issues people face when they are diagnosed with prostate cancer, and helping people to cope with their diagnosis and treatment. As a National Federation, Tackle has 90 support groups across the country, representing some 15,000 members.

Cycle to the Moon ambassador, vocal coach and TV presenter David Grant, said:

“Prostate cancer does not care who it affects or the devastation it causes to patients and their families. It's a cause close to my heart as my cousin was diagnosed, so I want to urge you to make a difference and get on your bikes and clock up some miles. One man dying every 45 minutes is a startling figure and we all need to do what we can to reduce mortality figures. This is a chance for members of the public to fight this cancer. The event is open to all ages regardless of abilities, it is designed as a fun and healthy activity whilst at the same time raising funds for Tackle Prostate Cancer."

Prostate cancer is now a bigger killer than breast cancer. making prostate cancer the third biggest cancer killer in the UK. Every penny raised will make a difference, lives will be saved and more people will be aware of the need to be tested. The money will help the charity continue to meet its objectives of campaigning on behalf of patients and raising awareness in the community. It will also enable the ‘Save a Dad’ initiative to be followed through in secondary schools where the aim is to get a discussion on prostate cancer in the National Curriculum, just as breast cancer is included today. Working through secondary schools Tackle would like to make teenagers aware that prostate cancer will impact 1 in 8 of their dads. The charity hopes that by educating the next generation about the importance of men being tested earlier it can help “Save a Dad”.

Professor Frank Chinegwundoh MBE, Consultant Urological Surgeon, Barts Health NHS Trust, Chairman, Tackle Clinical Advisory Board said: “Prostate cancer is the most common cancer in men in the UK.  Unfortunately many men are unaware of this fact and unaware that there is a blood test, PSA, that is an indicator of their risk.  The 'Cycle to the Moon, Save a Dad' initiative will raise children's awareness and thus their fathers. Undoubtedly, lives will be saved.  Knowledge is power.”

Lord Rose, Ambassador for Tackle Prostate Cancer said: "One in eight men in the UK will develop Prostate Cancer. Tackle's initiative 'Cycle to the Moon, Save a Dad' is an exciting fundraising event which aims, through schools, to raise awareness in the next generation and hopefully see more men at risk of prostate cancer having an earlier diagnosis."

If you would like to get involved please go to the Cycle to the Moon website  where you can download a fundraising pack full of great ideas and tips to get peddling for the fight against prostate cancer.

Email: saveadad@tackleprostate.org

Roger Wotton attends ESO Masterclass in Lisbon

Tackle Chairman attended the ESO Masterclass which took place in Lisbon from 23 to 25 February 2018. A summary of the event is below:

Around 50 delegates from all over Europe got a warm welcome in Lisbon by ESO. When the sun was shining outside, the 3rd Masterclass in Cancer Patient Advocacy had a flying kick-off after some welcoming words from Kathy Redmond, Masterclass coordinator.

Amongst the delegates was countries as Turkey, Israel, Slovak rep., Slovenia, Serbia, Bulgaria, Czech rep. , Poland and Latvia  and this trend has to increase so we have more representation from the other side of the “12° East line” .  During the conference a number of “experts” were invited to present different ways for us to improve in networking and leadership skills. Some of these presentations was too theoretical and missed somewhat the target. In other blocks people from different patient organisations were invited to present their experience from the real life. What difficulty they had experienced in xx country? These presentations give you much more “take home” information than a theoretical study. During the last session the concept of “Community advisory Board” was presented and can be used in special situations but is for the moment not applicable for our situation.

Highlights: 

Mike Hudson Compass Partner – Workshop for “Creating effective Boards”.

We all felt rather familiar with questions as governance, succession planning as well as what a board member should do.

Jean-Pierre THIERRY France – Closing the gap between the costs and benefits of cancer medicine.

The Lancet, 2010 report fails to show that the long-term outcomes of robot-assisted surgery are superior to those of conventional procedures shows a good example of costs without the benefit.

The crisis of confidence in the results of clinical trials is demonstrated by

• Unreported negative results

• Bias in patient selection, statistical methods, interpretation

• Non-independent authors/Conflicts of Interest

Sandra Bull 360’ communication

Here we got the chance to test ourselves in different crisis communication scenarios where it is important to be prepared and not to panic when the difficult question is coming your way.

Bettina Ryll melanoma Network Europe- How to read an original scientific publication

We all know the difficulties to get the important info out of those many scientific publications we see all the time. What’s “fake news” and what is correct?

Ian Galloway MPNE Ocular/Rare - MRIs for Post-Primary Uveal Melanoma Patients in Scotland

Scottish ocular melanoma patients are unable to receive MRI scans after primary diagnosis

To win the fight you sometimes have to play dirty and be persistent in what you believe in. Get some strong allies.

Maja Kocic Lymphoma Coalition Europe and Serbia

Survey “Lymphoma care in Serbia”

What is not measured has no chance to be improved!  To better understand issues and challenges that lymphoma/CLL patients in Serbia face and to improve access to novel and standard treatments they developed their own report by highlighting the things important from the Serbian patient point of view

In the survey 527 out of 600 completed the study but  63% were wrongly diagnosed, 18% were diagnosed with wrong Subtype  and only 19% was correctly diagnosed for their initial symptoms.

With a rather simple adaption of an existing survey it was in Serbia giving a very good result to be a base for future action in survivorship care.

Dr Stefania Mostaccioli Lega per la Neurofibromatosi 2 Onlus- When you have to fight against fixed positions

When you have to fight “reclassification of Rare diseases” by the Ministry of Health bureaucrats you have to find some expert that stands up for your course and help you in the fight.

“It is easier to break an atom than a prejudice”  - A. Einstein

Summary

A worthwhile masterclass although there was rather too much “tell” and not enough time for discussion. A number of presenters overran on time and panel discussions did not allow sufficient time for questions from the floor.  It might also have been better to hear more personal stories of patient advocacy from attendees rather than presentations form the steering committee.  

Stephen Fry talks about his recent prostate cancer journey

Stephen Fry  announced today that he has been diagnosed with prostate cancer.

In a full and frank video, he explains in detail about his particular diagnosis and how he was treated.

Importantly, he strongly encourages men to get their PSA checked. As Tackle followers will know, early detection is one of key objectives through our Get a Score on the Board campaign. As we say in that campaign, "you'd be nuts not to".

Tackle writes to NHS England highlighting bicalutamide availability problem

Tackle Chairman Roger Wotton has sent a joint letter with PCUK to NHS England to highlight the diificulty that men are facing in getting access from pharmacists to the off-patent treatment bicalutamide, as well as several other generic treatments.

Read the letter in full.

TK Maxx Supports Tackle

Tackle Chairman Roger Wotton is presented with a cheque from the fashion retailer TK Maxx in Coventry. 

TK Maxx selected Tackle as one of their community charities following the diagnosis of one of their senior managers.

We really appreciate the support.

Report from Roger Wotton on Prostate Cancer Europe Round Table

Tackle Chairman Roger Wotton attended the Prostate Cancer Europe Round Table discussion held in Brussels on 23 January 2018. He reports:

This was an event that delivered a lot more than expected in terms of alignment and positivity.  Thirty two attendees represented countries from Sweden in the north to Malta in the south and Ireland in the west to Romania in the east. Five pharmaceutical companies attended, along with representatives from the World Health Organisation and the European Parliament.  Keeping order in his consummately professional style was Prof. Hendrik van Poppel.

Overall one was left with a feeling of the management of prostate cancer certainly moving forward, at least in terms of clinical practice if not entirely in terms of uniform progress at a pan-European level.  It was encouraging to see the patient viewpoint being reinforced.

 Increasing support for the inevitable march towards prostate cancer screening was welcome, although “more informed PSA testing” might be a more accurate description of where we are today.  This at least addresses the out of date criticism of over-diagnosis and over-treatment, which was encouraging.  More informed testing was seen to lead to earlier diagnosis and lower mortality, but more needs to be done to at least discuss the relevant risk factors leading to an agreed testing regime. This was not universally being applied.  

There was no shortage of mention about leading edge therapies, but this is where there is some degree of disparity across Europe. This was also noticeable in the wide variation of incidence and mortality rates we are still witnessing.

From the European Commission point of view we heard about the vast sums of money (some €70 Billion) being allocated to cancer projects across Europe, with Horizon 2020 being a beacon for improving cancer outcomes. For prostate cancer, somewhere between 90 and 100 projects are currently being supported with a spend of €130 million.

The WHO Europe perspective highlighted 76,000 deaths p.a. from prostate cancer across Europe and many risk factors still being poorly understood.

The EAU White Paper was discussed and highlighted the cost of some €600,000 p.a. for drugs to treat a hormone-relapsed metastatic patient to achieve a 2 year improvement in survival.  It raises the question as to whether we need to treat all patients with this type of therapy.

A good discussion followed on prostate cancer centre of excellence or “reference centres” as a way of ensuring equality of diagnosis and treatment.  It would seem cultural differences might get in the way, but there are examples of where more sharing of facilities can work : the use of video and publishing outcomes in the UK ; the shared decision planning system in use in Germany, always with a second opinion factored in.

As the discussion turned to a roundtable on how individual countries were faring some interesting points were raised:

  • The great step forward in robotic surgery, even though there are some countries with no robots (Northern Ireland for example).  Italy has over 100 robots and 80% of prostatectomies in Sweden are now robotic. Question – does this mean newly qualified urologists become robot-dependant and not able to carry out general open surgery? In addition, quality control is required for all surgeons carrying out robotic surgery;
  • We are seeing fewer and fewer radiotherapy fractions being given and at the same time advances in scanning techniques with Choline PET scans being superseded by PSMA scans  where (in Germany) the delivery of the therapy goes alongside the scan, although they are  aware of some potential toxicity issues; 
  • An interesting point was raised by Ireland in terms of health economics where we should be looking more closely at outcomes which cost the health service a great deal of money. The best treatment may not have the best outcome for the patient; 
  • It was seen as a real pity that for all the advances in treatment of breast cancer, prostate cancer is still seen as the poor relation.  What can we learn from breast cancer screening and treatment?;
  • It is encouraging to see the increasing use of MRI scans (or mpMRI scans) prior to biopsy, or maybe even working towards a scan before a PSA test?  Evidence of the value of scanning prior to a TRUS biopsy is piling up every week.  The big issue here is the inconsistency in quality of radiologists who need to be fully trained to use the new technology;
  • There was a lot of interest in “big data”, having quality data collected across Europe to be able to compare progress and incidence at each stage. Even getting the results of PSA tests into databases would be an improvement. This was linked also to creating a network between doctors to support the three pillars of information, education and monitoring.  Furthermore, it would improve sharing and standardised reporting. Meaningful outcome measure would have to be agreed.

Overall, a very worthwhile roundtable event where Europa Uomo should be strongly represented in the future.

Ipswich Town Legend Titus Bramble has a PSA Test!

One of our main aims is to encourage early detection of prostate cancer. 1 in 8 men will develop prostate cancer and for black men that risk is 1 in 4.

Recently, ex-Ipswich Town legend Titus Bramble had a PSA test to encourage more men in the black community to get themselves tested.

Well done Titus!

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