4 Nov 2014

We’ve teamed up with the Movember Foundation to fund a pioneering research project called ‘Life after prostate cancer diagnosis’. This research aims to discover what life is really like for men with prostate cancer in the UK, and what needs to happen to improve it.

Researchers at the University of Leeds and Queen’s University Belfast will lead the first ever in depth, UK-wide study of men diagnosed with prostate cancer to find out what effect it’s had on their physical, emotional and social wellbeing.

As part of the study, we expect that men in England and Wales who were diagnosed with prostate cancer between one and three years ago will get a survey through the post next year. Men in Scotland and Northern Ireland will be sent surveys in 2016, and some men from all four nations will get a second survey around a year after the first to find out whether anything’s changed since. Other men and their partners will be invited to speak to the researchers in more depth to help them drill below the surface of the survey results into the issues that men and their families are dealing with.

In total, around 100,000 men will be asked to speak out about how well they really feel after a prostate cancer diagnosis or treatment. For the first time ever, this research will give us a very clear and highly detailed picture of what life is like for men with prostate cancer across the UK. It should tell us how it changes over time, what helps men cope, what gaps there are in support and care services and whether any of these issues change depending on where you are in the country.

Dr Sarah Cant, Director of Policy and Strategy at Prostate Cancer UK said: “This exciting study is going to investigate all the issues that could affect a man after he’s been diagnosed with prostate cancer. It will also look to see if men of different ages, locations, ethnicities and socio-economic groups have different experiences.  We will use the results to make sure all men in the UK can get the support they need, and help men and their doctors make the best decisions about treatment and care. Ultimately, we want to improve the lives of men with prostate cancer, and this research should help us do just that.”

Adam Glaser

Dr Adam Glaser

One of the co-leads of the study is Dr Adam Glaser, Consultant and Clinical Associate Professor in Paediatric Oncology and the Late-Effects of Cancer at the University of Leeds.  He told us: “Healthcare is fundamentally about improving people’s health. And to judge the success of that, you have to ask the public and patients: ‘What’s important to you? What’s been particularly good or bad, and how can we improve?’

“It’s not enough just to be alive. We need to know what life is like for men living with prostate cancer and at the moment we do not have a good enough understanding of this.”

Also leading the project is Dr Anna Gavin, Director of the Northern Ireland Cancer Registry and Clinical Reader in the School of Medicine, Dentistry and Biomedical Sciences at Queen’s University Belfast.  She said: “There are likely variations in the standard of support and care available in different areas – internationally, between different UK countries, and even different parts of the same country. This project is funded by the Movember Foundation, who also fund similar work in Ireland and Australia. We will link to these projects so we can compare and learn from how men are doing in different countries, as well as in different parts of the same country.” 

We also plan to survey men who do not have prostate cancer, so that we can see really clearly, what experiences and issues are important to men in general, and what are specifically relevant to men with prostate cancer. This is the first time we will be able to make this comparison.

We need large-scale studies like this, with information from tens of thousands of men, to influence the way the health sector spends money.

Dr Glaser added: “This is very powerful information for influencing high level policy-making. Health providers want to provide good services and have services that compare favourably to others around the world. But we need large-scale studies like this, with information from tens of thousands of men, to influence the way the health sector spends their money.

“We can also use information from different areas and different countries to learn why things are better in one place than another. For example there might be a relatively simple aspect of care in one area that’s different but that actually makes a big difference to a man’s quality of life. Getting that adopted elsewhere could mean a relatively quick improvement to men’s overall health.”

We know that quality of life after prostate cancer isn’t a level playing field – not everyone experiences the same issues and side effects. But we hope that the sheer scale of this study will mean that we gather enough information to identify specific factors, such as physical or emotional issues, that put some men at greater risk of poorer wellbeing after prostate cancer.

It will also help us understand what puts men at risk of a bad experience during and after treatment, so we can better advise and support them in future. Dr Gavin concludes: “We hope this research will shine a spotlight on how men are really feeling after prostate cancer treatment. Maybe even after treatment has finished, some men have problems dealing with the side effects and don’t know who to talk to, or are embarrassed about doing so. They may not even know if they’re the only person feeling this way. This research will bring those issues into the open.

“And if you’re one of the men invited to take part in this study, please accept the invitation. You are important to us and we want the results of this study to improve life for men with prostate cancer now and in the future. The more answers we get back, the more forceful our results will be. We want to hear your story, and we will treat it as valuable and in confidence.”

Hugh Butcher Crop

Prostate cancer survivorship and me: Hugh Butcher, patient representative

Hugh Butcher, 72, describes himself as being in his fourth year of prostate cancer survivorship. He was diagnosed with prostate cancer five years ago after a six month delay he still regrets. “I’d been to see the doctor at least three times to talk about  ‘waterworks’ problems  but the GP led me to believe that  this  was unsurprising, since I was getting on a bit.”

Six months later, Hugh was with the practice nurse for a flu jab, and saw a poster on the wall with a picture of a dripping tap, and a list of symptoms to look out for. Hugh had all those symptoms, and so the nurse took a blood sample for a PSA test.

When it came to deciding on his treatment, Hugh wasn’t really given any choice. “Maybe there weren’t any other options for me, but I didn’t really know anything about prostate cancer at that stage, and had no idea what sort of questions I should be asking. The doctor told me to have radiotherapy and hormone therapy, and I thought: ‘Well, he’s the expert. Better do as he says’. Now, I may not have made a different decision if I’d known more about it, but I’d certainly have felt better knowing that it was a more informed decision.”

Hugh feels strongly that men should be given all the information and support they need to be able to contribute to their treatment decisions. And this has motivated him to get involved in numerous projects with healthcare providers and researchers to make sure patients’ interests are properly represented. With extensive experience in this area, Hugh is now leading the patient group advising the Life after prostate cancer diagnosis study.

Hugh said: “I’m really interested in how we measure the success of different treatments and care options and I was greatly impressed by the team of people working on this project.

“This study is really important from the patient point of view because it puts a big emphasis on what matters to men. Once we know what’s truly important for men after prostate cancer treatment, and how diagnosis and treatment has affected their life, we’ll be able to see where the money needs to go and what we need to do to improve things.

“By responding to this study, men will be engaging in an important process to improve their own and others’ experience. Men owe it to themselves to have their say.”

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