Wednesday, 13 November 2013

Why Sir Stephen Bubb's latest blog is so important

Sir Stephen Bubb, Chief Executive of the Association of Chief Executives of Voluntary Organisations (ACEVO) writes today in the Guardian about his experience of being diagnosed with and subsequently treated for prostate cancer. Stephen and I have been talking throughout the year and thankfully he’s responded positively to treatment and is back in good health.  It takes guts to stand up and talk about being diagnosed and treated with any cancer, and I applaud Stephen’s effort in writing this blog post and sticking his neck out.

Although Stephen spends a lot of his working life working with cancer charities, he still found the decision regarding what treatment to go for difficult to make. His story, of getting differing advice following diagnosis is one I hear from many men who receive the news they have prostate cancer. If you’ve never experienced any major medical treatment (and good luck to you), you may think that following such a diagnosis, the options you will be presented with will be clear cut. As Stephen’s blog illustrates, that’s rarely the case. Go for surgical removal of the prostate and risk side effects that include erectile dysfunction and incontinence (this isn’t a family blog and it’s part of my remit to be as open as possible); undergo active surveillance and fancy the uncertainty of what can feel like inaction, or go for a form of radiotherapy? Ultimately, it’ll be your choice.

The only way to be able to make the best choice for treatment – and this is true of whether or not to get a PSA test too – is to be informed. Knowing the risks and the benefits of diagnostic tests and treatments options will always make the decision easier and feel less like taking your turn at the lucky dip. At Prostate Cancer UK we provide a wealth of practical, evidenced and unbiased information leaflets and other publications on all aspects of prostate disease. We also run a confidential helpline staffed by Specialist Nurses who can provide answers to all your questions. If you (or your partner) are going through any part of the journey that Stephen describes, and have unanswered questions, or simply want a little bit of support, please do get in touch.

As it’s only 13 days into Movember, I don’t have too much to show in terms of my Mo, but I would like to echo Stephen’s sentiment and thank the hundreds of thousands of Mo-bros and Mo-sistas who are raising funds for men’s health this year. You can read more about how we’re spending the money from the Movember Foundation on cutting edge research and support here

Monday, 21 October 2013

A shocking statistic for men

To paraphrase Orwell ‘All men are created equal, but some are more equal than others’. This statement rings true no more so than with prostate cancer and men in the UK.

We’ve known for a long time that prostate cancer is more likely to strike black* men than those of other ethnicities, but the figure that our Evidence team at Prostate Cancer UK recently unearthed is truly staggering. 1 in 4 black men will be diagnosed with prostate cancer during their lifetime. That’s double the overall figure of 1 in 8 for all men in the UK. Double.

You almost certainly saw the coverage we got in the media when we launched our campaign to highlight this issue, with coverage in the Daily Mail, The Times and The afro news. Although this is a great start, as an organisation we’ve never been about just shouting at the ether. We’re going to tackle this problem ourselves.

Following this awareness campaign, we’re launching an ambitious programme of research, and community engagement within the black community to specifically address this bias towards black men. We’re going to 

Increase our knowledge 
We want to further our understanding of prostate cancer within the black community through better research and data collection. 

Raise understanding and empower more men 
Increase community understanding and empower men in the black community to take control of their health. 

Strengthen our bonds 
Build on our links and communication with leaders within the black community to strengthen our partnerships.

Working together we can help highlight this inequality, work towards a solution and raise the profile of prostate cancer across the UK. All men deserve better.

* When we say black men, we mean men who describe themselves as Black African, Black Caribbean or Black other. This doesn’t include men who describe themselves as Black mixed – we don’t have enough data on this group.

Monday, 29 July 2013

Omega-3 fatty acids and an increased risk of prostate cancer? It all sounds a bit fishy.

There’ve been a number of stories in the papers recently concerning use of Omega-3 supplements increasing the risk of prostate cancer by as much as 70 per cent. We fully support all research that might bring us closer to identifying a cause for prostate cancer – especially since that will likely lead us towards better diagnosis and treatment – but it is important to get the facts straight.

The authors of the study that started these headlines found an association between men with prostate cancer and high levels of omega-3 fatty acids in their blood – fatty acid levels were generally higher in men with prostate cancer than those in the comparison group. This does not mean that high levels of Omega-3 fatty acids must therefore be the cause or indeed increase the risk of prostate cancer. I have a tennis racket sitting in my shed at home, but this doesn’t make me Andy Murray.

The finding that led to this figure of 70 per cent was that men with aggressive prostate cancer were 1.7 times more likely to have high levels of fatty acid in their blood than they were to have low levels. As all the men already had prostate cancer, this doesn’t tell us whether this association had anything to do with the men’s risk of getting cancer, or that high Omega-3 levels cause cancer. This is leap one into the unknown.

Leap two: surprisingly, especially given the media frenzy it has led to, this research never mentions Omega-3 consumption at all. We don’t know whether the men involved were taking Omega-3 supplements, or had a diet high (or even low) in oily fish. All we know is that they had high levels of fatty acids in their blood. Since we can’t tell what caused the prostate cancer in these men, we would need further trials using a valid and unbiased measurement of dietary intake to draw a reliable conclusion about any risk of prostate cancer associated with Omega-3 consumption. Although admittedly that doesn’t make such a great headline.

What’s really great about this story (although probably not what the authors intended to get from it) is how many people are now talking about prostate cancer. Although the headlines have caused a lot of worry and confusion, people in the Prostate Cancer UK online community and other prostate cancer forums are really trying to make their own minds up about this, and are sharing their thoughts and experiences.

Current research suggests there are actually a number of health benefits derived from Omega-3 fatty acids, including reduced risk of heart disease and relief for people with rheumatoid arthritis, but really the best advice when it comes to nutrition is to eat a healthy balanced diet and stay active. And not to believe everything you read in the papers.

Monday, 3 June 2013

Why our 1,200 volunteers make all the difference.

The man I spoke to knew exactly how I was feeling. Talking to someone who had been through treatment and was doing well took some of the fear away” – feedback from our Peer Support service

At Prostate Cancer UK, we recognise the importance of volunteers. Without them, our Peer Support Services would not exist. Our campaigning work to raise the profile of prostate cancer in the UK would be hobbled. Successes with key partners like the Football League and Royal Mail would be much harder. Put simply, volunteers are the glue that holds us together and help us help more men with prostate cancer.

The 1st of June marks the beginning of Volunteers’ Week, even though seven days seems like a very small amount of time to celebrate the millions of hours these men and women give to causes in the UK every single year. At Prostate Cancer UK, we simply couldn’t do without the help of people like Jean Herd. Jean has been volunteering for us since 2008. She has campaigned at our Day of Action in Westminster; shook buckets with her family to raise money at Sheffield United on a freezing January afternoon; helped provide telephone Peer Support for partners of men diagnosed with prostate cancer; given talks about prostate cancer, and shared her experience of the disease at our health professional education events. She’s miraculous. 

Jean Herd and her husband Chris in one of our information films
What’s even more impressive is that Jean is just one of the 1,200 volunteers working with us throughout the UK, that’s nearly ten times the number of staff we employ. As a charity, we are growing to ensure we meet the needs of men across the UK and are in a position to get and keep men’s health on the agenda. Our volunteers are and always will be a major part of our strategy for doing this and we are always on the look out for dedicated men and women like Jean to help. We are particularly keen for men and women who would be happy to talk about their experiences of prostate cancer to help spread the word and become one of our Volunteer Speakers. If you have a spare hour here and there – and think you could help – please get in contact with our volunteer team.

For their fundraising and their support, for sharing their knowledge and experience and raising awareness of prostate cancer, I would like to thank all of our volunteers for their help. We couldn’t do it without you. 

Tuesday, 21 May 2013

BRCA2 and the good news that got lost in the headlines

This weekend the papers reported that a man – who carried the faulty BRCA2 gene – had undergone surgery to remove his prostate as a form of preventative treatment for prostate cancer. The articles published in the Sunday Times and Daily Mail – which follows the news that Angelina Jolie had preventative surgery for breast cancer – stated this man was the first in the world to go through such a procedure.

Strictly speaking, and although it ruins a good news story, this is not true. This gentleman had early signs of malignancy in his biopsy results, so wasn’t cancer free. He used the information that he carried the BRCA2 gene as a decision maker to choose which treatment to have. The world is still to see a preventative prostatectomy, and with the evidence as it stands, I hope it stays that way.

There is currently little (if any) information or research on the effect of preventative prostatectomy for prostate cancer and we don’t know enough about the clinical outcomes. Removal of the prostate can lead to serious (and long term) side effects, including erectile dysfunction and incontinence. Put simply, there’s no data whatsoever on whether carrying out this surgery will improve survival rates or men’s quality of life. It’s also worth remembering that many men develop prostate cancer because of other factors other than carrying the BRCA2 gene. In fact, only five to 10 per cent of prostate cancers are thought to be strongly linked to inherited risk.

Last month I wrote about new research from the ICR that linked BRCA2 with aggressive prostate cancer and the need for treatment. It was through taking part in a similar study that the man in question found out he carried this faulty gene. This research is important and could lead to advances that help men with prostate cancer, but not through preventative surgery at this stage.

Through all this discussion around preventative surgery, it’s easy for the good news to get lost: identifying the link between the BRCA2 gene and aggressive prostate cancer is a great step forward for men’s health. In the short term, we can offer men with this faulty gene genetic counselling and frequently screen them for any sign of prostate cancer. In the long term, and with further research, we could be in the position to tell aggressive from non-aggressive prostate cancer in a simple and effective way. Now there’s a newsworthy story.

Wednesday, 17 April 2013

Singing from the same hymn sheet

Last June we made a bid to become Royal Mail’s charity partner, and won. Royal Mail was an obvious choice for us – a national company that is part of everyone’s daily life and which employs a lot of men. You couldn’t design a better charity partner for Prostate Cancer UK if you tried.
The Royal Mail Group has already raised £800,000 to help us beat prostate cancer, which is a phenomenal amount of money. From growing Mos for Movember and crazy cycling challenges, to supporting our awareness campaign by obliterating walnuts, the Royal Mail has taken our cause to heart and jumped straight into the thick of raising money and awareness.
The latest in the series of first-class (sorry) fundraising initiatives by Royal Mail is this stirring rendition of the famous hymn ‘Abide with Me’. X-Factor winner Joe McElderry, and the Royal Mail Choir, have teamed up to record the single to raise funds and awareness for Prostate Cancer UK. I think you’ll agree it’s pretty special.

You can download this single now from Amazon and iTunes for 99p. For every download Royal Mail is donating an extra £1 to the charity, so I’d urge you to buy it.
Huge thanks must go to the men and women in the Royal Mail Choir who managed to fit in time around their normal jobs to practice and put this track together. Thanks also to Joe McElderry for taking time out from his busy schedule to record and promote Abide with Me to help men across the UK get a better deal.
Our partnership with Royal Mail is already having an impact in local communities. The money they have raised has funded the creation of four specialist prostate cancer nurse roles based around the UK. These nurses provide much needed local support to men affected by prostate cancer, and the money raised by Abide with Me will help us fund more nurses to reach more men in their own communities. So next time you open your door to your local postman or postwoman, give them a pat on the back and a thank you from all of us at Prostate Cancer UK.

Tuesday, 9 April 2013

A step closer to the holy grail

You may well have already heard in the news today about the link between a faulty gene called BRCA2 and aggressive prostate cancer that has come from research carried out at The Institute of Cancer Research, London. Testing men to see if they have this BRCA2 gene could potentially be a way of identifying whether men are likely to develop the aggressive form of prostate cancer. Finding a way of identifying aggressive from non-aggressive disease is one of our three key research priorities, so this news is a great step forward.

Men faced with a diagnosis of prostate cancer are often put in a position of making decisions regarding their treatment without knowing whether their disease will lie dormant for years or spread like wildfire. With some diseases, this wouldn't be a problem, as the side-effects of treatment are less severe, and it would be an obvious choice to opt for the therapy that would rule out further problems and cure the cancer. Unfortunately when it comes to prostate cancer, the side-effects can be devastating for men, with impotence, incontinence and other physical and emotional symptoms a common problem.

If the prostate cancer is aggressive and potentially life-threatening, curative treatment - even with these common side-effects - is an obvious choice; better to live with these side-effects than the alternative. But some prostate cancers will not be aggressive and may cause very little problems. For these men, invasive treatment may be unnecessary.

I don't think it's overstating the issue to say that a test to tell aggressive from non-aggressive prostate cancer has been the holy grail for a number of years. This research is a step forward towards this goal, and we need to develop this work to enable medical professionals in the UK to tailor prostate cancer treatments more effectively.

Wednesday, 27 February 2013

Together we're stronger

If you haven’t read any of Dan Zenka’s blog – My New York Minute – then you’ve missed out, but I really can’t let you miss his latest post on an enlightening, thought-provoking and above all moving documentary called Men’s Retreat. Filmed over a period of three days in Washington DC, Men’s Retreat brings together 12 men diagnosed with prostate cancer who discuss their journey through this horrible disease.

Men's Retreat
There may be a vast ocean and over 3,000 miles between us and these 12 brave men in the USA, but when you listen to their stories and their experiences of living with prostate cancer, much of what they describe will resonate with many men in the UK. Dan, who himself takes part in the film, is Senior Vice President of the Prostate Cancer Foundation, one of Movember's partners in the USA.

One of our Trustees, Professor Roger Kirby recently talked to the magazine Intelligent Life about his journey through prostate cancer too. As a world renowned urologist, Roger is more used to holding the scalpel than being underneath it, but as with the men in Washington, his experience will no doubt ring true for many. Men like Roger and Dan, who are willing to share their experience of prostate cancer, help break down barriers.

Roger Kirby, picture courtesy of Nick Ballon

Working with the Movember Foundation has helped us all break down global barriers, bringing organisations such as ours together to share experiences and co-ordinate our learning and response. Together we are stronger, and when you’re going up against something as deadly as prostate cancer, you need all the help and support you can get. I look forward to learning more from our partners across the globe and sharing what we’ve learned with them too. 

Saturday, 23 February 2013

Guest blog: £2.7 million on new research grant awards

Dr Iain Frame, Director of Research at Prostate Cancer UK, talks about the new research grants awarded this year.

This week, we are celebrating the announcement of the new research grants awarded by Prostate Cancer UK. There are 17 grants in total, based in 14 universities or research institutes across the UK. We will be investing £2.7m over the next three years in the most promising research to work towards improving the lives of men with prostate cancer.

Two of those awards – we call them pilots – are at King’s College London and are relatively small in terms of funding but huge in terms of potential to make a real difference through research. We provide funding for pilot awards to help researchers learn more about certain areas so as they can go on and develop new diagnostic tests or treatments through getting larger awards either from us or other funders of prostate cancer research.

We fund innovative research in laboratories across the UK.

The two pilot awards at King’s College London – granted to Dr Sophie Papa and Dr Christine Galustian – are both looking at ways to manipulate the immune system to deliver more targeted treatments for men with prostate cancer. Dr Papa is testing if a new protein drug called FAB4 can help direct immune cells in the body towards prostate cancer cells and whether it helps them destroy the tumour. If successful, this could provide a new treatment for men affected by advanced prostate cancer.

Dr Galustian is focusing on a group of proteins called cytokines, which can help boost the body’s immune system to fight and destroy cancer cells; and antibodies that block a type of white blood cell that stops the immune system killing cancer cells. The problem with both cytokines and antibodies is that they are both toxic and can cause autoimmune reactions (where the body attacks healthy tissue). Dr Galustian’s pilot award is looking at adding a specific molecule, much like a tail, to these proteins which will make them attach to nearby cells and tissues and stop them circulating around the body. This would allow doctors to inject these proteins into the site of the prostate tumour knowing they wouldn't spread elsewhere; focussing the treatment and lessening the side-effects. Exciting stuff!

Both of these pilot awards are based in the laboratory and are looking at improving current treatments. Currently, there is a treatment for targeting the immune system but it is only available for patients with late stage prostate cancer. When prostate cancer reaches this advanced stage, the immune system is already weakened, and it is difficult to boost the response against the tumour and target the area most needed. Men who have reached this stage of advanced prostate cancer have very limited treatment options, which is why it’s so vitally important we fund research pilot awards like Dr Papa’s and Dr Galustian’s. I will be watching how this area progresses with great interest and look forward to updating you as it progresses.

Dr Iain Frame

Tuesday, 22 January 2013

The Nutcracker Suite - taking a sledgehammer to prostate cancer

You’ve no doubt seen our Sledgehammer Fund adverts on TV and in the newspapers over the last couple of weeks, but if you haven’t already witnessed our Nutcracker Suite you’re missing out on a cracker.

For two weeks from the 21 January we have taken over a shop front in central London and are hoping to smash 10,000 walnuts – one for every £5 donation we receive by text or online. Linked up live to our website via a webcam, a host of celebrities (including Neil Fox, Diane Louise Jordan, Rebecca Front, Kazia Pelka and Tommy Walsh), campaigners, corporate supporters and members of the public will all be wielding a sledgehammer to help raise awareness of prostate cancer and the vital funds needed to help crack it.

Famous nut crackers in the Nutcracker Suite  (l to r): Kazia Pelka, Tommy Walsh, Neil Fox, Seamus O'Farrell (Prostate Cancer UK Director of Communications), Diane Louise Jordan, Me, Rebecca Front.
The Nutcracker Suite is an entertaining and innovative way of connecting people to their donations and yet again I am reminded how fortunate we are to have such generous and hardworking partners and supporters. A big thank you to Marks and Spencer for giving us 10,000 walnuts for free, and Keyline Builders Merchants who provided the all-important sledgehammers. Huge thanks also to Healthy Planet, who helped us located a room in central London and donated the space for free. Royal Mail, another of our corporate partners, is taking over the Nutcracker Suite for the entire day on Wednesday 30 January and will hopefully be dispatching hundreds of walnuts to their final destination.

Although the Nutcracker Suite is a fun event there is an important message behind it. 10,000 men a year die from prostate cancer and the odds of developing the disease are now 1 in 8. If we can smash 10,000 walnuts and raise £50,000 we can fund even more research into beating this deadly disease. You can donate now by texting CRACK to 70004 or visiting

I’m looking forward to taking my turn in the Nutcracker Suite and taking a sledgehammer to prostate cancer, you can follow my progress via twitter.

Me helping to crack prostate cancer, one nut at a time.