As I have discussed here, delays in a diagnosis of cancer are one reason why the UK fares worse in cancer survival than other countries . This has led to campaigns like this one to remind the public to go and get symptoms checked out early. However, most people who go and have tests will ultimately get the ‘all-clear’- in other words they will not be diagnosed with cancer. This is of course good news, however having experienced a false alarm might have some unintended consequences. It may impact on mood and anxiety levels long after the all-clear has been given. What’s more, a false alarm may influence future symptom appraisal because it may lead people to think that it’s just another false alarm, so they won’t bother to go to the GP again.

Our researchers looked at all available research studies which reported information on false alarms and subsequent symptom attribution or help-seeking published between 1990 and February 2014 to see whether this assumption was true. They included only studies that looked at adult patients who presented with symptoms and did not include studies where additional tests were required after routine cancer screening, because the effect of a false alarm may be different in this context.
Our researchers found 19 national and international studies that met their criteria. Six of these were carried out in the UK, three in other European countries, six in the USA, three in Canada and one in Australia. The most frequently studied cancer was breast cancer, followed by gynaecological, bowel, testicular, head and neck, brain cancer and multiple cancer sites.

Our researchers found that, as predicted, people often explained a delay in seeking help for a symptom due to being overly reassured by a previous false alarm. This was true across different types of cancer. Interestingly, a previous false alarm often resulted in normalising novel symptoms and attributing them to the previous benign diagnosis even in the case of symptoms occurring months or years after the false alarm. This finding is concerning, because having had an all-clear diagnosis in the past does not guarantee that you won’t develop cancer in the future. Therefore, it is really important to remain vigilant and go and get checked every time a new symptom appears, or a symptom won’t go away.

Feeling ‘foolish’ and under-supported the first time help was sought for a symptom was another important theme that emerged from the review. Patients who felt dismissed, and who felt that they did not get enough explanation about what to do if the symptoms did not go away or if new symptoms appeared were less likely to seek help in the future.

However, there were some limitations to the review – for example our researchers might have missed some studies as in the majority of cases they were not directly investigating the effects of false alarms; moreover, the ones they did find were based on small number of patients who were interviewed after they had been diagnosed with cancer . Therefore, we are planning to do some more research in the future which will specifically focus on the topic.

These findings highlight how important it is to provide balanced information to patients when they are investigated for possible cancer symptoms, making sure not to cause unnecessary anxiety and at the same time avoiding false reassurance. Furthermore, the results show that it is important to take patients’ concerns seriously and encourage patients to see a doctor promptly if they have new possible cancer symptoms or if symptoms don’t go away even if they have been checked before. Early diagnosis will only be successful if patients feel assured that they are not perceived as hypochondriacs or wasting the GP’s time.

Article Reference:Renzi C, Whitaker KL, Wardle J: Over-reassurance and undersupport after a ‘false alarm’: a systematic review of the impact on subsequent cancer symptom attribution and help seeking BMJ Open 2015;5:2 e007002 doi:10.1136/bmjopen-2014-007002   http://bmjopen.bmj.com/content/5/2/e007002.full#ref-11

Catching cancer early is important because it gives a better chance of survival. Although the UK has one of the best heatlhcare systems in the world, it still does worse for cancer survival one year after diagnosis than other countries with a similar standard of care. One reason for this is that cancer is often found at a later stage, and is therefore more difficult to treat.

Researchers are trying to work out what contributes to a late cancer diagnosis. One factor could be delays in the time it takes the GP to refer a patient to see a specialist. This is why guidelines have been developed to make sure that patients are seen within a reasonable time period . However, for the GP to make a referral, the patient has to present with a symptom in the first place. For that to happen, people need to recognise their symptoms as serious enough to make an appointment to get it checked out. A big part of our research at the HBRC tries to find out what factors stop people from going and seeing their GP when they have symptoms that might be signs of cancer.

In studieswhere people are specifically asked about cancer and cancer symptoms, they are usually pretty good at listing at least a few. They are even better if the symptoms are already listed and they just have to recognize them as potential signs of cancer. However, in studies where cancer patients have been asked about what led to their diagnosis, many have said that they did not recognise their symptom as a sign of cancer at first and therefore saw no need to go and see the GP; although fear of a cancer diagnosis was also sometimes mentioned as a reason not to go and see a GP .

This shows that, as often, the research studies may not actually reflect what happens in the ‘real world’. Given that many cancers have quite varied symptoms that could be due to lots of causes, such as bloating, change in bowel habits, unexplained bleeding or a persistent cough, it is not surprising that many people may not link these to something as serious as cancer. Others, such as lumps, may be more recognisable.

It appeared that once people had thought about cancer, they could tell which symptoms were related. However, our researchers tried to find out whether people would think of cancer as a potential cause for a symptom without any prior prompting.

This study was part of a larger survey study, where people answered lots of questions about their health, including any symptoms that would not go away within the last three months. Our researchers were especially interested in responses of people who were over the age of 50. This was because cancer risk goes up with age. Therefore, it is more likely that symptoms are caused by cancer.

Our researchers selected 48 men and women of different ages, ethnicities and social backgrounds who had agreed to be interviewed. They were asked to describe the experience of their symptoms, why they thought it was happening, who they had asked for advice and what they had done about it. Crucially, cancer was never mentioned, to make sure that people would not be set up to think about it. However, the researchers would point out to people that they should get their symptoms checked after the interview.

Only about half of the people interviewed had seen the GP about a symptom. People were most likely to seek help from the GP when they had persistent bleeding. Fewer people sought help for a sore that does not heal or a persistent cough. People sought help because they thought that a symptom was serious, out of the ordinary, and because they had a ‘gut-instinct’ that something wasn’t right. Often, they also mentioned that they had talked about their symptoms to friends and relatives, and that they had encouraged them to see a GP. For example, one participant described how his persistent coughing woke up his wife who told him to go and do something about it. However, how people defined ‘persistent’ varied a lot – sometimes they had a symptom for many years, before they went and sought help for it. People also went to the GP once they had thought about cancer as a possible cause for their symptom. For example, they saw cancer awareness campaigns, which then made them realise that their symptom may be serious.

People who did not seek help for their symptom thought that it was nothing serious. Often they just attributed it to getting older, and there was an assumption that the body wasn’t as good at repairing itself. Many also had a stoic attitude (“stiff upper lip”) to their symptom, and there was a perception that going to see the doctor would be a sign of weakness, and that they would be seen as ‘timewasters’. This attitude often led people to tolerate quite severe symptoms, such as severe diarrhoea, or visible lumps. To a lesser extent, some had negative attitudes towards the healthcare system, and did not believe that the doctors could do anything about their symptom.

Interestingly, the findings did not differ between men and women and between people from different social backgrounds; although this might have been because we only asked a small number of people about their opinions.

This study thus offers some potential explanations for UK’s struggle with early detection of cancer. Cultural norms (‘stiff upper lip’), lack of knowledge about symptoms, putting symptoms down to old age, as well as fear of a cancer diagnosis, are all contributing factors. It is important to continue making people aware about the warning signs of cancer. The recent campaigns by the major cancer charities therefore seem to be on the right track. It may also be important for GPs to encourage their patients to come and see them if a symptom doesn’t go away, to counteract concerns by patients that they may be seen as ‘timewasters’. This may be especially true for the elderly, who may be more prone to avoid medical care unless absolutely necessary.

What are the Warning Signs of cancer? (Source: CRUK)

Signs of cancer for men and women:

• An unusual lump or swelling anywhere on your body
• A change in the size, shape or colour of a mole
• A sore that won’t heal after several weeks
• A mouth or tongue ulcer that lasts longer than three weeks
• A cough or croaky voice that lasts longer than three weeks
• Persistent difficulty swallowing or indigestion
• Problems passing urine
• Blood in your urine
• Blood in your bowel motions
• A change to more frequent bowel motions that lasts longer than four to six weeks
• Unexplained weight loss or heavy night sweats
• An unexplained pain or ache that lasts longer than four weeks
• Breathlessness
• Coughing up blood

Signs of cancer for women:

• An unusual breast change
• Bleeding from the vagina after the menopause or between periods
• Persistent bloating

Article reference:  Help seeking for cancer ‘alarm’ symptoms: a qualitative interview study of primary care patients in the UK
Katriina L Whitaker, Una Macleod, Kelly Winstanley, Suzanne E Scott, Jane Wardle
British Journal of General Practice Feb 2015,65(631)e96-e105;DOI: 10.3399/bjgp15X683533

http://bjgp.org/content/65/631/e96