PhD student Kate Williams talks about her team’s new research paper
Keep active; eat healthily; don’t smoke: general lifestyle advice isn’t hard to come by.
And a range of organisations – including the UK government and charities like Cancer Research UK – put a lot of time and effort into explaining and encouraging people to live healthily, so that they increase their chances of avoiding a range of diseases – including cancer.
But what about advice for people who already have cancer, or who are in long-term follow-up? Are there things they could do to boost their chances of avoiding subsequent illness? And even if there are, what’s the best way to get this information across, without seeming insensitive or inappropriate?
Obviously, people with cancer aren’t all the same. They differ – not just in terms of where they are in their treatment, which treatment they have, or which cancer they have – but also in terms of their general health, and their attitudes and beliefs about lifestyle change. It’s not a ‘one-size-fits-all’ situation.
But it turns out that cancer patients and survivors are given very little lifestyle advice, even though, as well see, there’s evidence it could be really helpful.
My Cancer Research UK-funded research group, based at UCL, is looking at this issue. We’re trying to work out whether and how to offer advice to cancer patients in a sensitive, appropriate manner.
This week, we’ve published new findings in the British Journal of Cancer, so we thought it would be good to explain the background to what we’ve found, what it means, and where we go next.
Lifestyle and cancer survivorship
As the UK population ages and treatments continue to improve, more and more people will survive a diagnosis of cancer. This is great news, and a testament to our colleagues in biology labs and hospital wards around the world.
But cancer survivorship carries with it long term risks of various diseases – not just a recurrence of cancer. For example, people who have been diagnosed with cancer are at a greater risk of cardiovascular disease and osteoporosis.
This is thought to be due to a combination of factors including lifestyle, genetics and treatment effects – hence the importance of a healthy lifestyle.
Does healthy living help cancer patients?
Although still in its early stages, there’s a growing body of evidence suggesting that healthy lifestyles could help cancer patients and survivors.
For example, a recent study of previous research (a so-called ‘meta-analysis’) found that exercise can reduce fatigue and depression, and improve quality of life among cancer survivors. This same review also found that exercise may even help prevent the disease coming back in breast cancer survivors.
Other studies have suggested that changes to diet can have positive effects, for example, reducing fat intake seems to be associated with a longer ‘disease-free survival’.
Based on the evidence currently available, the World Cancer Research Fund suggests that following treatment, cancer survivors try follow the lifestyle guidelines for cancer prevention. These include trying to be active for at least 30 minutes a day, limiting energy-dense foods such as sugary drinks, and eating more fruit and vegetables.
But despite these guidelines, and despite patients and survivors being in regular contact with doctors, nurses and other health professionals, they don’t seem to be given reliable, structured advice.
There are a whole range of possible reasons, such as lack of time in consultations, and the worry that raising the issue of lifestyle may seem insensitive or upsetting at a time when you’re trying to cope with the stress of diagnosis and treatment.
Understanding which of these is important is the first step in improving things.
What do friends and family think?
In our new paper, published today, we set out to find out what those closest to cancer patients (their friends and family) think about doctors giving cancer patients lifestyle advice.
We asked 1273 people who knew someone close with cancer a series of questions to assess their attitudes towards giving cancer patients advice on exercise, healthy eating and weight loss.
We’ve shown for the very first time that people don’t think it would be inappropriate to give lifestyle advice to cancer patients – in fact, quite the opposite.
More than eight out of ten (over 85 per cent) of those closest to cancer patients saw lifestyle advice as ‘beneficial’ and a similar proportion (over 80 per cent) believed that doctors had a ‘duty’ to provide it.
We also found that fewer than two out of ten (less than 20 per cent) of people felt such advice was ‘unnecessary’, ‘interfering’, ‘insensitive’, or implied ‘blame’.
For comparison, we also asked a small number of people with cancer – or who had been diagnosed with cancer in the past – what their thoughts were on lifestyle advice. They were equally as positive, with the majority agreeing that lifestyle advice was a good thing.
These findings are very encouraging, and suggest even those closest to cancer patients think lifestyle advice is a good idea. We hope that these findings will help encourage health professionals to broach the subject of lifestyle with their cancer patients.
So, clearly, there seems to be a lot of support for the idea of giving patients evidence-based advice on what they could do to reduce the likelihood of ill health later on.
But there are still questions that need answering, such as:
- When is the best time to give cancer patients lifestyle advice?
- Who is the best person to give the advice – should it be a doctor, a nurse, a physiotherapist or a dietician?
- What format should the advice take – would patients prefer a leaflet, a dvd or verbal advice?
These are all questions I hope to answer in the next stages of my PhD, where I’m planning to find out much more about what cancer patients, cancer survivors and health professionals all think of this issue.
- Kate Williams is a Cancer Research UK-funded PhD student at UCL’s Health Behaviour Research Centre.
- Williams K., Beeken R.J. & Wardle J. (2013). Health behaviour advice to cancer patients: the perspective of social network members, British Journal of Cancer, DOI: 10.1038/bjc.2013.38
Mo Letts March 4, 2013
Life Style Advice would be welcome from this cancer sufferer. I too have secondary cancer in spine, hips and ribs. I have been told that exercise is a no no, apart from walking. However, I am also supposed to keep my weight under control, my weight, was fairly well controlled before I started cancer treatment. I have had advice from a physiotherapist regarding exercise, and it was the same as the consultant, walking is about it. Although, I am not vastly overweight I really do struggle to keep it down through trying to eat less, I just feel too hungry to go without my food, I always exercised in the past. Also have more treatment on the way soon, so know that the chemo will have an impact on energy levels and food intake….I found it really difficult to find anything I wanted to eat in the first few sessions, then when the steroids kicked in I would eat anything, including a horse….given the chance. I do think that even within the cycle of treatment, before and after advice would be most welcome for the vast majority of people. It also gives us a feeling of control, something we can do to help us, help ourselves. I am sorry for those people who feel lifestyle choices are to do with blame, we all know this disease can get you, regardless of lifestyle. Anything that improves your chances sounds good to me.
Christine Pointon March 4, 2013
Hi – I think lifestyle tips are a brilliant idea , however with so many different categories of cancer information needs to be more tailored. For example my daughter is suffering from secondary breast cancer in her bones, liver and pleural membrane. Prior to cancer afflicting her she was really into keep fit, loved going to the gym, running, swimming and aerobics. Obviously since her plueralmembrane has become affected she has difficulty with her breathingt although the oxygen helps with this. She misses exercise so much and yet everyone says exercise. Could there not be some simple forms of exercise that could be devised to help people like my daughter.
From living an energetic life she is now unable to do a lot – she is on chemo two out of every three weeks and this obviously takes its toll. She is also a single parent and we try to encourage her to be as independent as possible at this moment in time – I always feel that she would benefit from lifestyle advice from a third party – Mums are Mums at the end of the day and not always listened to. Just thought that this was worth mentioning
jitendra March 3, 2013
What is sugary drinks pl , describe clear
Henry Scowcroft March 1, 2013
Thanks everyone for your comments. Brian, we’ve passed your information on to our nurse team, who will be in contact shortly. For info, you can reach them on freephone 0808 800 4040 9am until 5pm Monday to Friday, or via this web page:
Cancer Research UK
Nicola Nissen March 1, 2013
I found many of the comments very enlightening. I too have had cancer, breast in 2001 and now again in 2012, with treatment still continuing into 2013. I have added leakemia now which is I am happy to say responding well to treatment. Between these times and well before I have always been very active and really have never had any other illness, even colds and coughs were rare – as indeed they still are. I have always believed fruit and veg with meat or fish to be the best diet and indeed less expensive than ‘fast foods’. My family have always been well with no drastic illness to their names. my mother died at a very young age of a brain tumer, so is this for me more in the genes than anything else? This is the silent killer and we are lucky to discover it in time for treatment, and although much is done now – in fact my mother may survive today – but until we know the real cause and stop it from starting it will I feel remain a mystery. One which we are definately learning much about and will one day free the world of it. So my heartfelt thanx to all working so hard on a cure and before the cure is needed. My love and mental support to all going through this yukky time.
jane black February 28, 2013
I have a 26 year old son who has had Hodgkins for 5 years now and we have done lots of research and self-help ourselves, particularly on the nutrition side. I personally think that this is a vitally important thing to cover when the people are undergoing treatments such as chemo, stem cell s, steroids and many other fairly destructive, chemical effects on their body. I have encouraged my son to eat less sugar, take at least 2000microgrms of Vitamin D3 per day and iron rich foods to strengthen bones(depleted by the effect of steroids), take a brazil nut fairly frequently for selenium to strengthen his immune system, try to eat more chicken and fish for protein rather than red meat, try to include turmeric in the diet and eat lots of vegetables etc,etc. There should be nutritional help for cancer patients as well as part of the lifestyle help. Most of all , try to stay active and positive as much as you can to escape the horror of it all.
Brian Hutchins February 28, 2013
I have secondary bowel cancer in my lungs which was found prior to the primary tumor that was successfully removed in 2004 and has been clear since.
Concerning the secondary nodules in my lungs however I was told that they were very slow growing and would not be able to be assessed by PET scan because they were too small ( 3 – 4 mm in 2004 ) and further CT scans in 2005 and 2007 showed little change (oncologists words) and since that last scan I was not offered any treatment or information so I assumed this was good news.
In 2012 I had to go in hospital for an angiogram and on being released I collapsed in reception and had to be readmitted through A&E where I had an Xray and later a CT scan after which I was told to go home. However some time later I received a phone call from my GP saying the hospital had made an appointment for a PET scan.
On receiving the results I was told by my GP that the nodules had proved to be malignant and had grown, the largest being now 45mm. I was shocked by this and did not understand why I was not given more information as this was found by chance- if I had not become ill I would still not have known my condition.
This aroused my suspicion and I requested my records from
the hospital (with some difficulty) on reading them I discovered that the largest nodule had increased to 19mm in the 2007 scan and then more than doubled in size to the present time.
On questioning my oncologist about this I was told that I would not have been treated any differently even if they had known that the nodules were malignant. I was given a brochure on treating metastasis which mentioned alternative treatments other than chemo which they had to stop after my original operation due to toxicity but I was unable to obtain an answer why these would not have been available to me, would it be that the tumor has now advanced so much that they would now not be possible?
I am sorry if I am directing this to the wrong quarter but i do not know what to do, would it be possible to pass this to someone that could help me?
Frances Lindsay-Hills February 28, 2013
One of the most important things about lifestyle advice is that it gives people who love the cancer sufferer and opportunity to contribute to their welfare. So often partners feel helpless. If you know that for instance cooking meals from the excellent cancer back up cook book or making them fruit smoothies will help – at least that is something you can do.
Mick February 28, 2013
In the last decade my wife and I were diagnosed with different cancers, breast cancer and multiple myeloma respectively. To cope with our illnesses we needed to ask a number of professionals for a range of advice – medical, clinical, dietary and fitness. We weren’t going to wait for the ‘right time’ to ask – with cancer, the time is now. There was of course no one person to ask or who had all the answers.
It was clear that diet and fitness were central to our well being and survival – we did a lot of research by ourselves and decided how we should change our diet to our advantage. We trusted scientifically based diets and avoided hearsay.
In our experience our respective NHS consultants were very professional, positive and constructive; they concentrated on the clinical side of treating the disease, the hospital system provided us with plenty of contacts who could give us the dietary and other information we needed. We think consultant’s time is best spent on investigating and treating disease clinically.
It’s been vital for us to talk with as many people as possible and get feedback, to overcome our anxieties and reinforce our positive feelings. We can imagine that for some this can be very difficult, and the less articulate could well be at a disadvantage in a clinical situation. Our own advice to them would be to keep asking questions of everyone they encounter: there’s nothing to be gained from silence. And professionals: you must continue to watch out for those who might not be able talk about their disease and needs, and for their sake, communicate first.
Shena Mason February 28, 2013
I was on a real mission to get fit after my mastectomy in 2005. I joined a health club, went to lots of classes, swimming etc. and tried things I would never have thought of, such as tai chi, which I still enjoy. My husband and I had always been keen hill walkers and we continued that. I lost a couple of stone and felt probably as fit as I’d felt for 30-odd years (meant I could try on all sorts of ‘unsuitable’ clothes in dress shops!). Sadly the cancer came back after a couple of years but I think I have kept well with it for longer partly because of keeping fit. It makes you feel better mentally as well as physically. My disease is now quite advanced, and I just don’t have the energy or stamina any more to do what I was doing which I find frustrating, and not being able to get out on the hills in my walking boots saddens me, but I wouldn’t have missed those few years for anything, my quality of life was great. We still eat healthily (home-grown veg., no horseburgers!)and go for gentle walks when I’m having a good day. I try to keep mentally active, though I sleep a lot. I did find a distinct lack of available advice on exercise when I first looked around – most of my doctors thought I was fitter than they were and didn’t know enough about exercise to be able to offer advice, so I just got on with it, avoiding high-impact activities. Go for it. You might help to stop it coming back, but if it does you may live better with it.
Deborah Jenkins February 28, 2013
I think people with any illness could benefit from lifestyle advice as well as people who are well at the moment but smoke, drink or are overweight. I think we all know that smoking is bad for you and that we should try to eat healthier and exercise more. Advice from a professional might help to guide us in the right direction and help us see the benefits of a healthy lifestyle. My friend is very overweight as is her 14 year old son, if she could have some lifestyle help she could help herself and be a better role model for her son, I worry about his health being so overweight as a child. I had breast cancer in December 2010 and I have recovered well. I had a fairly healthy diet and exercised 3 or 4 times a week and was generally very active. I was a little over weight but not by a great deal but I still got breast cancer. Having cancer is difficult to deal with and I would hate for people to think that they brought it upon themselves through poor diet, lack of exercise etc. There is more to getting cancer than just lifestyle but having advice if done in a caring way can only help. After cancer people want to try and get fitter again, if they are weak it would be a great help to have advice on where to start, what exercises to do and have advice on diet issues as well
Cherry Steel February 28, 2013
I had an operation for breast cancer last year on the 17th of April, 2012. The team of people & surgeons involved with my care & my wonderful husband helped me through this experience & the positive attitude of everyone was the key to helping me recover. My husband & I are involved in horse racing, both the breeding and racing side, & to have this interest has also been very positive for me. There is nothing better than to experience a new life entering the world & watching it progress through life. Young children/grandchildren are also very helpful in the healing process too.
The best way to help people who have or are in various stages of recovery even years after is to keep a positive attitude, to give advice on healthy eating together with some recipes & to encourage people to have hobby’s and holidays, in fact all the normal things in life. Everyone is different but we all need to keep active & interested in what is going on. With Computers,TV,DVD’s the internet, gyms & general entertainment & education there is plenty going on these days to help, but some people will need encouragement to do these things & this is where the positive help can be very valuable. If the person is on their own, organizing companionship for such events could be valuable & helpful.
My father had face & throat cancer & had half of his face taken away. He had a large garden, grew fruit & vegetables successfully & he just got on with life as usual. He lived happily for 25 years after his operation and was an inspiration to me as was my mother who lost an eye to cancer too. I hope this gives hope to any readers who are tackling cancer for the very first time.
Matt Huke-Jenner February 28, 2013
I was a healthy man with a youn family, but at the age of 40, I was diagnosed and treated for Kidney cancer in 2008 and was given NO ADVICE AT ALL. I was desperate after the operation to be given some advice on diet and lifestyle, even asking my oncologist directly, but was just given the advice “go and live your life”. I didn’t feel this was adequate then or now and would dearly love someone to talk to. I have read many books including some weird and wonderful ideas, but still feel more could be done. I’m not sure some surgeons are best placed to offer advice, but have met several caring nurses that would be excellent.
Christina Parkes February 28, 2013
I’m a breast cancer survivor and I think the best time to be given advise on lifestyle changes is after you have been through all the operation and treatments because from the time of diagnosis all you think about is getting through it day by day! When you hear those words”All Clear” it’s only then that you can take in any advise on diet and exercise! It’s one step at a time with cancer! I would think a verbal discussion with someone who has been through it and is living proof that it does work!
Sue Almond February 28, 2013
I am not sure about this. I have myeloma and amyloidosis, neither of which I had even heard of before my diagnosis. I think nurses and doctors mentioning healthy lifestyle options is difficult to avoid and leaflets, that I have had have included dietary advice and the importance of exercise, but in all honesty isn’t the advice generally going to be that which is good advice for anyone? Never in the history of the world has it been so easy to get information if you want it. Those who want it will look for it, assuming they can read. I do not think if would be justified to take a large amount of money for this in particular, given that my experience is that it is being done now. The priority for funding must be access to treatment, regardless of cost, and money for research. You would have to be very unlucky to pass though the hands of nurses, doctors, MacMillan staff, care workers, dieticians and not get any. Thousands of leaflets are unread everyday because some people can’t be bothered to read them, some just want to ‘enjoy’ the time they have got and ignore any advice that appears to be placing a constraint on them, some are in denial and won’t look at things. The attitude that someone has to force feed people ‘what is good for them’ is part of the problem loosely labelled ‘the nanny state’. We now have so many people who seem unable to think for themselves or take any responsibility and we cannot afford it. Spending is finite. Prioritise and give people back their dignity. Don’t assume that because they have one thing wrong with them that they can’t think for themselves. We can! As we are now 40% of the population we, as cancer patients, cannot go on being treated s if we are super needy. I have nothing but praise for the treatment I have had I am grateful but we do need to be realistic about what we can provide.
Gwynneth Lindley Jones February 27, 2013
This is essential and why hasn’t it been addressed before now? I had a rare cancer and after my surgery my GP had no interest in helping me because in his words “I don’t know how to help you because it is so rare”!!!!! I suggested that Macmillan nurses may be of use to me, both psychologically and to help me with dietary advice- – – “NO, sorry. You are a strong minded person, so I’m sure you will cope”.
Needless to say I managed and I am now “clear” 12 years on, but my marriage did not survive.
Hindsight is a great thing, so I hope that others will benefit from all the help that they can get.
sally February 12, 2013
I think this is a great article. I’ve just lost my dad to cancer and agree that its so important to help cancer patients and thier family make the right choices for thier health at a time when they often are desperate to do the right thing but are not always sure how. Those who are not interested wont do it – we shouldnt withhold such essential practical information to protect the feelings of a minority. I think that the advice should start at the start of treatment and be given by all health care professionals verbally but also in writing. Leaflets and official websites are great for those who have access, as they allow the reader to explore the detail in thier own time.
marie martin February 10, 2013
i have been reading this website and can i say my father is cancer free just now after a terrible time with throat cancer was treated in glasgow but i felt after treatment needs lifestyle help very much as after treatment there is nothing and is sad for patents trying to recover with no after help
John February 8, 2013
I think to be given lifestyle advice can only bring positive results. My father is being looked after by the team at Addenbrooke’s and they have been wonderful, but some of his lifestyle choices have probably not helped his cause (and I doubt he’s alone in this). When you get a diagnosis of cancer it can really throw you, lifestyle changes cross the mind but it’s not always easy to know ‘what’ to change and ‘how’, especially if the patient lives alone with no ‘daily feedback’ from other family members or has lived a certain way for a number of years (stuck in their ways, for want of a better phrase). Perhaps even simple meal suggestions for the culinarily challenged? Besides, if a patient can feel like they’re making a difference then it can make a big difference to the psychological battle, which is just as important as the physical one. Maybe advice could be given in a way that family members can benefit from too and refer back to, verbal communications don’t always sink in and stay in, especially when emotions are running.