July 2011 podcast transcript

This month we bring you highlights from the UK’s annual cancer data conference, including evidence that more men are dying from, rather than with, prostate cancer. Plus, worrying variations in cancer survival, increased spending on cancer research, and we take a look at the day in the life of our Cancer Nurses. Welcome to the Cancer Research UK podcast. I’m Ailsa Stevens.

The annual National Cancer Intelligence Network conference saw researchers reveal some of the latest data and trends in cancer diagnosis, treatments and survival.

One study showed that older women are less likely to have breast cancer surgery than those who are younger.

Experts are unsure of the exact reasons, although they say the findings cannot solely be explained by older women also having other illnesses that may make them unable to have surgery.

Dr Julie Sharp, senior science information manager at Cancer Research UK, tells us more.

“The researchers looked at over 23,000 women diagnosed with breast cancer in the UK between 1997 and 2005. They wanted to look at access to surgery, and see if older women were less likely to get access to surgery because of other diseases.

They actually found that even allowing for the fact that many older women have another illness, there was still an age discrepancy. Women over 70 were less likely to be given surgery to treat their breast cancer. And this is worrying because we know that surgery is a really key part of cancer treatment.

It’s really important that both the surgical community and the government look at this data and try and find out the reasons for this – why is it that older women are less likely to be offered surgery as a treatment? – to see what they can do to improve the situation. And it’s really important now that we’ve got this type of data, we need to get regular updates in the future so we can monitor what’s going on.”

More than 2,600 deaths in England from some of the most common types of cancer could be avoided each year if all cancer patients had the same chance of survival as the most affluent section of society.

The study found that the most well-off patients were more likely to survive than the poorest patients – a finding that is likely to hold true across the whole of the UK.

The greatest numbers of avoidable deaths were from breast, lung, bowel and prostate cancers – the four most common cancer types.

Sarah Woolnough, Cancer Research UK’s director of policy, explains why we are still seeing inequality in survival and what needs to be done.

“This analysis builds on other work that’s been undertaken showing that the UK’s cancer outcomes are not as good as the best in the world, and we know that inequality plays a role. So the most deprived groups are less likely to survive their cancer.

We are working really hard to understand why that is. We know that we need to encourage the adoption of healthy lifestyles across the board, including smoking cessation. We also need to better understand how we diagnose cancer as early as possible, through increasing awareness of signs and symptoms, encouraging people to go to the doctor, then encouraging GPs to refer appropriately and quickly and making sure that when patients are in secondary care, they’re getting diagnosed as swiftly as possible.”

New figures suggest that up to half of all men with prostate cancer who die do so as a direct result of the disease, rather than from other causes – contrary to previous belief.

Professor Malcolm Mason, Cancer Research UK’s prostate cancer expert, talks about the significance of this finding.

“This was a study looking at just over 50,000 men who were diagnosed with prostate cancer from the Thames Cancer Registry area, and this was over a ten year period between 1997 and 2007. The striking thing in this group was that just under half the men died of prostate cancer, with a smaller number of men dying of other causes of disease.

Now what we need to know in understanding these figures is what the stage distribution was of these men at presentation. Before the era when many men were having their PSA tested, a large proportion of new diagnoses of prostate cancer in the UK were made in men who already had advanced disease. That’s important because what we know and what this study actually underlines is that in men who have advanced disease, the commonest cause of death is prostate cancer.

So it’s quite inappropriate to say to a man with advanced metastatic disease ‘Oh don’t worry you’re more likely to die with it than of it,’ which is a platitude that we hear very frequently. And for those men with advanced disease that just simply isn’t true.”

Partners of the National Cancer Research Institute – the umbrella organisation that brings together all the major funders of UK cancer research - spent more than £500m on research last year, nearly double the amount spent ten years ago.

Thanks to past investment in research, we’ve seen survival from cancer double over recent decades. But more needs to be done – particularly in cancers that are harder to treat.

The new figures show that the amount invested in the three cancers with the poorest survival – oesophageal, lung and pancreatic cancer - has increased even more over the past decade.

Dr Jane Cope, director of the NCRI, told us about the impact this money is having on cancer research.

“Our analysis of the database looks at not just different areas of research like prevention or treatment, but we also analyse according to the different cancer types. And 40 per cent of the portfolio is specific to one cancer type or another. We find there is quite a lot of difference between the cancer types.

One thing we were quite shocked by in our first analysis is that lung cancer is poorly funded in relation to both the incidence and mortality from lung cancer. And we’ve done some work to try and increase the amount of funding in that area. And it has grown out of proportion to the doubling, so lung cancer research has actually gone up three-fold during that nine year period.

Some other cancers that are difficult to treat – for example pancreatic cancer, oesophageal cancer – research in those areas has also increased over and above the doubling in the portfolio, so that’s encouraging.”

Cancer Research UK launched its first ever patient information campaign to raise awareness about the services the charity offers to anyone who has questions about cancer.

This month our Cancer Information Nurses, who receive more than 10,000 enquiries a year, spent a day tweeting to let the public know what kind of questions they get and what it feels like to respond to them.

Cancer Research UK’s patient information resources not only include the Information Nurses’ freephone helpline but also the award-winning CancerHelpUK website and discussion forum CancerChat.

Our reporter Paul Thorne talks to Martin Ledwick, head information nurse at Cancer Research UK, about the work we do to ensure that people affected by cancer get the information they need.

PAUL: Every two minutes, someone in the UK is diagnosed with cancer. Dealing with a cancer diagnosis can be extremely stressful and understanding the disease can be very difficult. Providing high quality, clear information to patients and their families has the potential to help to reduce the fear that people often feel after being told they have cancer.

Cancer Research UK believes that this information should be freely available to anyone affected by cancer, and communicated in a way that people can easily understand.

There are three key ways that cancer information is delivered - through the patient information website, Cancerhelp UK, by the phone service staffed by cancer information nurses and via the online patient forum, CancerChat.

Last year the information nurses responded to more than 10,000 enquiries, while more than a million people every month visit CancerHelp UK. I spoke to head cancer information nurse Martin Ledwick to get an insight into the work of the nurses and discuss why good quality information is so important.

“The nurses are here to respond to any enquiries that come through to Cancer Research UK from members of the public about cancer, how it’s treated, what the warning signs are – anything that’s medical to do with the experience of having cancer.

Most of the enquiries we get come in on our phone service. We have a freephone number - 0808 800 4040 – which is open from 9 to 5 Monday to Friday. And on that number people can get straight through to talk to one of my team. But we also have an email form available on the website so people can email questions to us as well. And the split is about 60 per cent phone calls and 30 to 40 per cent emails.

It seems to be fundamentally important to us as humans to understand what’s happening to us and understand what’s happening to those who we love that are going through these kinds of experience. To some extent, getting a better understanding of your illness can help you deal with it emotionally.

But there does just seem to be a fundamental need to understand that people have. It also helps people make decisions and choices that they may be offered to do with treatment or what to do next. And it can give people a sense of control over what’s happening to them.

Recently with the rise of different ways that people can communicate with us at Cancer Research UK, we’re looking into all the different ways that we might be able to make it easier for people to ask questions of us and respond to them.

So one of the things we’ve been doing at the moment is offering sessions on our forum, CancerChat, where the nurses will visit the forum for a couple of hours and be available for people to ask them questions there. And the beauty of that is when people ask us questions there, it’s in a public forum. So a lot of other people who are looking at the forum can see the question and the answer and often it’s going to be something that might have affected them as well.

But we still do offer the phone service and the email service, which is completely confidential, so people who are perhaps feeling a bit embarrassed about something that’s happening to them or don’t want to discuss it in public can talk to us through those routes too.

We get a lot of positive feedback about the service. We get quite a few comments that are sent through to us by email that are uninvited from people telling us how much they valued the opportunity to be able to talk to someone. Only last week when we were running a session on the forum we had one of the people posting, and the first thing that person said was that she was so grateful that we were running those sessions.

But we do also try to formally evaluate the service every year when we send out questionnaires to telephone users and also to email users of the service. The feedback we get from those is always very positive, and yet we do try to ask real questions - we’re not just designing the questionnaire so we only get positive feedback. We give people plenty of places to comment on those and to give us whatever feedback they can, but it’s always very positive.

I think the best thing that people can do [when diagnosed with cancer] is ask their health professionals first of all. We shouldn’t be shy about asking the doctors and nurses that are looking after you to explain what’s happening to you. But often because questions come at a time when they aren’t in hospital and don’t have access to the doctors and nurses that are immediately looking after them, it’s extremely useful to be able to contact the telephone service that we provide, or go and look at the website and get information from there. All the information on Cancer Research UK’s patient information website is bang up to date and very clearly written. Or people can bang us off an email, or visit one of our live Q and A sessions on CancerChat.”

PAUL: Deborah Huggons, who was diagnosed with breast cancer in 2007, knows how important it is to access good quality, clear information. When I spoke to Deborah, we discussed what good quality information meant for her.

“I was really quite scared when I received that diagnosis, because I think in my mind I just assumed that that was it, really – that nothing could be done.”

PAUL: Before you received that diagnosis, did you know a lot of information about the disease?

“Nothing at all really, apart from what the GP would ask you to do – to regularly check for any lumps and so on – but I had no real in-depth information.”

PAUL: After you received that diagnosis you came to Cancer Research UK for information?

“When I’d got my head together after receiving the diagnosis I then looked for information to back up what I wanted to know. Certainly some of that information I research was through Cancer Research UK.”

PAUL: When you got that information, did that help alleviate some of the fears you had?

“Certainly. When I’d been reading statistics about the type of cancer I had and what could be done, and the type of treatment, I felt a lot more relaxed about it.”

PAUL: So you would say that information is very important for cancer patients?

“I think it’s paramount for patients to be able to access that information.”

PAUL: For your family as well – for your husband – did that information help them as well?

“Very much so, because my children were quite young then – they were 9 and 10 – so it was all very scary for everybody. But when we received the information that we’d researched from Cancer Research UK, we were able to put that into the language that our children would understand and pass that one, which alleviated a lot of fear in them.

And certainly with my husband, because he hadn’t come across any cases of this before - I think I was the first in a big family to have been diagnosed with breast cancer, so it was new to everybody. And my husband certainly found that useful.”

PAUL: If you had some advice for other people who’ve just been diagnosed, what would you say about getting access to information?

“I would say look at Cancer Research UK’s website. I think everybody is given access to the breast nurses within their local hospital, and they pointed me in lots of directions for different sorts of information, and I found that most useful.

So I would say go and look for it, when the time’s right for you to look for it. I think there is certainly a time when you have to get it in your head and work it out for yourself. And then when you’re a little more level-headed, go out and look for information, find out about it, ask as many people who have the knowledge for that information. I found Cancer Research UK to be one of the most informed websites to access.”

That was Paul Thorne talking to Deborah Huggons.

We’ll be back next month with all the latest news. In the meantime, you can get involved by joining our Facebook group.