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‘I’m either going through the menopause, or I’ve got cervical cancer’ – how do women make sense of bodily changes that could (but probably don’t) signal cancer?

Jo Waller7 July 2015

The recent cervical screening awareness week was a great opportunity to share information about cervical screening.  Screening (the ‘smear test’) aims to pick up and treat abnormal cells in the cervix before they become cancer.  But for most gynaecological cancers, there isn’t a screening programme, so noticing symptoms and getting them checked is the key to making sure cancer can be diagnosed at an early stage when treatment is most effective.

Our newly published research paper tried to understand how women notice and make sense of symptoms that might indicate a gynae cancer.  There are five of these cancers, affecting the cervix, womb, ovary, vagina and vulva.  They have a range of symptoms, many of which are common and are caused by much less serious conditions – things like bloating, bleeding between periods or after sex, and changes in bowel habits.  We interviewed 26 women who’d had these kinds of symptoms to find out what they thought had caused them, and what they’d done about them.  Generally, and understandably, most women assumed that the symptoms were caused by everyday things like diet, the contraceptive pill, menopause or pre-existing conditions like fibroids.  We didn’t mention cancer in the interviews, and nor did most of the women taking part.  One participant whose periods had become longer than usual said: ‘I have a contraceptive implant which can cause irregular bleeding … It never caused me any trouble and suddenly all this. So that could be one of the reasons.

Most women in our study tried to manage the symptoms themselves, or talked to friends or family about them, rather than going to the doctor.  They only tended to see their GP if the symptoms got worse or became persistent.

Our study highlights the essential conundrum of cancer symptoms, which is that the symptoms that indicate cancer are often quite common, and in most cases will be have a much less serious explanation.  But if we ignore them completely, or until they become debilitating, we risk diagnosing cancer at a later stage when treatment might be more aggressive and less effective.  The difficult thing is finding the balance between rushing to the doctor for every twinge, and leaving it too late when something is really wrong.

Cancer Research UK have developed guidelines to help people decide when it’s appropriate to go to the doctor and get a symptom checked out.  For example, with bloating, they suggest you make an appointment if you’ve been bloated on most days for at least 3 weeks.  This should be useful for people worrying about whether their symptom is serious enough to warrant ‘bothering’ their GP, which is sometimes a barrier to making an appointment.

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Our research group is continuing to do work to try to understand how people make sense of symptoms, and the processes through which they decide if and when to seek help.  If you do work in this area, you might be interested in this funding call for early diagnosis research.  And if you have comments on our study, we’d love to hear them.

Disentangling the complex relationship of obesity and colorectal cancer risk

Susanne F Meisel8 May 2014

One of the groups most at risk of colorectal cancer – the severely obese (BMI ≥ 40) – appear to be less likely to take up colorectal cancer screening than people in lower weight categories.

We know from previous research that obese individuals are not only more likely to be diagnosed with both colorectal cancer and breast cancer, but also more likely to die from them.  However, because earlier detection of these cancers increases chances of survival, researchers from our department wanted to know whether lower rates of cancer screening participation in this group might play a part in their comparatively poorer survival rates.

The NHS breast screening programme invites women aged 50 to 70 (extended to 74 in some areas) for screening by mammography every three years . which is carried out by a health professional.  In contrast, in the NHS Bowel Screening Programme, men and women aged 60–69 (which will be extended to 74) are sent a Faecal Occult Blood Testing kit (FOBT) every two years which they complete at home and return for analysis.

The research was conducted with 1,804 persons eligible for NHS colorectal screening and 2,401 persons eligible for NHS breast screening in the UK, who were each asked if they had ever been screened and if this was part of the NHS screening programme.  Of those, 131 were severely overweight.

The results showed that an individual’s weight has no impact on whether or not they are likely to attend breast cancer screening (in fact overall rates are high at 92%).  However, weight does  affect participation in colorectal cancer screening. We found that rates of colorectal cancer screening decreased as weight increased, and that those who are severely obese, are significantly less likely than their lean counterparts to take part in colorectal screening (just 45% reported participating, compared to the overall rate of 63%).

So, delayed detection may play a role in the relationship between overweight and the risk of being diagnosed later, when colorectal cancer may be more advanced.  As these findings come from a large sample of people, it is unlikely that these results were due to chance.  But why might weight impact whether or not a person participates in colorectal cancer screening but not breast cancer screening?   Perhaps heavier people find it difficult to actually carry out the colorectal screening test, which they are required to do at home, as it necessitates a certain amount of flexibility and mobility and we know obesity is associated with mobility problems, particularly in older adults. This is speculation at the moment, and it is likely other factors are involved. We did not ask participants why they did not attend screening, so more research needs to be done to find out more about attitudes to cancer screening.

This could help us to develop interventions that might help combat the double disadvantage these individuals face, in terms of having both a higher risk of developing colorectal cancer and a lower uptake of screening. The NHS is currently rolling out a different method of colorectal cancer screening, in which people will receive a flexible sigmoidoscopy which, like mammography, is a procedure carried out by Health Professionals.  It will be interesting to see whether there are still differences in participation for this method of screening according to weight status.

 

 

Article reference:

Beeken RJ, Wilson R, McDonald L, Wardle J. Body mass index and cancer screening: Findings from the English Longitudinal Study of Ageing. Journal of Medical Screening, published online first 22nd April, 2014. doi:10.1177/0969141314531409

 

Actions do not only speak louder than words

Siu Hing Lo21 November 2013

Failing to do as you say is so common that it is considered part of human nature. New Year’s resolutions – also discussed in one of our blog posts on habits last year – are one of the most telling examples of failed good intentions. Even when the objective is less ambitious than changing bad habits, good intentions often don’t translate into actions. One-off or infrequent behaviours like screening for cancer are also prone to the “intention-behaviour gap” problem.

“Implementation intentions” have been one of the most promising areas of psychological research in the past one or two decades. They are a form of action plans which aim to reduce the intention-behaviour gap. People are typically asked to respond to practical questions about when, where and how they are going to perform the intended actions and how they will overcome potential obstacles. This simple intervention has been consistently shown to increase the odds of people undertaking action.

However, a conventional implementation intentions intervention requires people to formulate an answer for themselves which is difficult to accomplish in large scale public health interventions. For this reason, we described solutions to common barriers in the same format as implementation intentions in our recently published bowel cancer screening field study. These pre-formulated implementation intentions were then incorporated into the existing bowel cancer screening instruction leaflet.

Unfortunately our intervention did not have an effect on overall participation in the bowel cancer screening programme. It seems that the intention-behaviour gap cannot be overcome through passive exposure to action plans. Paradoxically, people apparently need to do something in order to increase the chances of actually doing what they intend to do. Actions not only speak louder than words, they are also more effective than words.

References

Gollwitzer, P.M. & P. Sheeran (2006), ‘Implementation intentions and goal achievement: a meta-analysis of effects and processes’, Advances in Experimental Social Psychology, 38, 69-119.

Lo, S.H., Good, A., Sheeran, P., Baio, Gianluca, Rainbow, S., Vart, G., von Wagner, C. & J. Wardle (2013), Pre-formulated Implementation Intentions to Promote Colorectal Cancer Screening: a Cluster-Randomized Trial, Health Psychology.

Michael Douglas: ‘My particular cancer is caused by cunnilingus’ – what do we really know?

Rachael Dodd7 June 2013

Comments by Michael Douglas about the cause of his throat cancer over the last few days have caused quite a stir. In an interview with the Guardian, he suggested that his cancer had been caused by oral sex although he now claims that he was misquoted. So what is the truth behind the hype?  Does oral sex really cause cancer?

Douglas’ assertion that human papillomavirus (HPV) is implicated in head and neck cancer is rooted in strong scientific evidence.  HPV is a very common sexually transmitted virus – around 80% of sexually active people will contract it at some point in their lives.  In the vast majority of cases, the immune system clears the virus without the person even knowing they have it.  In rare cases, the virus persists and that’s when cancer can develop.  The virus has long been known to be the main cause of cervical cancer in women, and girls aged 12-13 are routinely vaccinated against HPV in schools in the UK.

It is now known that HPV also plays a role in the development of other cancers, including some head and neck cancers.  As yet, we understand relatively little about exactly what puts people at higher risk of oral HPV, although sexual behaviour is likely to play a role.  Given that HPV is so common, it could be considered a normal consequence of being sexually active; the key scientific question is why, when most people clear the infection without any problems, some people don’t get rid of it.  

What we do know is that oral cancer is on the rise.  In the past, drinking alcohol and smoking were the main risk factors, but that seems to be changing. HPV-related oral cancer is often seen in people who don’t drink and smoke, and who tend to be younger and more affluent than non-HPV oral cancer patients.  The good news is that the prognosis appears to be better for these types of cancers – something that’s borne out by Douglas’ successful treatment despite late-stage disease.

For some patients, being told that their cancer is caused by HPV might raise difficult questions about when and how they got the virus.  Michael Douglas was refreshingly open and up-front in his discussion of cunnilingus but not everyone is so comfortable talking about sex and sexually transmitted infections.  While scientific research continues to push forward our understanding of the virus, we also need good communication and information about HPV as a cause of head and neck cancer.  Previous research has shown that women who test positive for HPV in cervical screening can sometimes experience feelings of stigma and anxiety, but understanding that the virus is very common can help reduce these feelings.

Very little psychological research has been done in the area of HPV and head and neck cancer. This is why I am beginning a PhD in September which is going to look at the psychosocial implications of a diagnosis of HPV-related head and neck cancer. I will be starting with interviewing health professionals and ask them about their experiences of talking to patients about the causes of their cancer. I will also talk to patients about their experiences with a view to developing information about HPV that can address patients’ needs. I hope that my research will assist health professionals in talking to patients with HPV-related head and neck cancer and also provide patients with much needed information they can use to address questions or concerns they may have around their diagnosis.

 

Rachael Dodd (r.dodd@ucl.ac.uk)

References

Brooks, X. (2013, June 3) ‘My particular cancer is caused by cunnilingus. And if you have it, cunnilingus is also the best cure’. The Guardian, p6-9

McCaffery K, Waller J, Nazroo J, Wardle J. Social and psychological impact of HPV testing in cervical screening: a qualitative study. Sex Transm Infect. 2006 Apr;82(2):169-74.

 

Jade Goody: Her role in women’s cervical screening decisions

Jo Waller23 January 2013

Type Jade Goody’s name into Google Images and you find an array of pictures from bouncy Big Brother star, through smiling but bald cancer patient, to pain-wracked dying woman.  Jade was diagnosed with cervical cancer in 2008 and died at the age of 27 just a few months later.  Her tragic story received unprecedented media attention and the general public were privy to the intimate details of the last months of her life.  In what has become known as the ‘Jade Effect’, her story had an extraordinary impact on women’s participation in cervical screening – we think about half a million extra women went for screening during the time of her illness.

As psychologists, we were interested in which women were influenced by Jade’s story and why.  To try to understand more about the Jade Effect, we did a survey of 890 women in England – all of them within the age range that are offered screening..  We collected information about women’s age and their social background and we asked them if they’d been affected by Jade’s story in their decisions about cervical screening.  The survey was done about 18 months after Jade’s death, so we asked women to think back over that time period.

The most interesting finding was that younger women were more influenced by Jade, and so were women who had children at a younger age, and who came from more deprived backgrounds.  So why do we think this is?  Well, Jade was 27 when she died, and it’s no secret that she had a hard childhood in Bermondsey – hers was a ‘rags to riches’ story.  She also had children young – in her early 20s.  So it seems possible that the women who were most influenced by her were those who could identify with her.  Perhaps there was a sense of ‘it could have been me’ – and this was the prompt they needed to go for screening.  Suddenly the stakes were raised and the barriers to having a smear test didn’t seem so important.  It’s also possible that some people are more affected by stories than facts.  The blanket media coverage and the emotional story of Jade’s illness probably affected people very differently compared with the kind of factual leaflets that are usually used in screening programmes.  It could be a case of heart vs. head, and perhaps as psychologists and health educators, we need to realise that stories, or ‘narratives’ as they’re sometimes known, can be a good way to get our message across.

 

Jo Waller (j.waller@ucl.ac.uk)

 

References

Lancucki L, Sasieni P, Patnick J, Day TJ, Vessey MP.  The impact of Jade Goody’s diagnosis and death on the NHS Cervical Screening Programme.   J Med Screen. 2012 Jun;19(2):89-93. doi: 10.1258/jms.2012.012028. Epub 2012 May 31.

Marlow LA, Sangha A, Patnick J, Waller J.  The Jade Goody Effect: whose cervical screening decisions were influenced by her story?   J Med Screen. 2012 Dec 27. [Epub ahead of print]