Breast cancer has many pink-festooned fundraisers and prostate cancer has Movember but New Zealand’s biggest cancer killer gets little fanfare.
The smoking stigma and too few survivors means lung cancer awareness falls short, to the point where most people surveyed recently* thought breast and prostate cancer were our biggest killers.
In fact, lung cancer accounts for 1650 deaths a year (19.2 per cent of cancer deaths) and the five-year survival rate is just 10 per cent, compared with 86 per cent for breast cancer and 91 per cent for prostate cancer.
While the statistics provide a chilling incentive to quit smoking, the news is not all bad for lung cancer patients. Early diagnosis and treatment of non-invasive cancer increases the five-year survival rate dramatically*, and at the least, earlier diagnosis and targeted therapy can improve the quality and length of life.
Catherine Smith, a lung cancer nurse specialist at Canterbury District Health Board, was one of the nurses attending the launch in May of the Cancer Society’s 2014 Lung Cancer Health Report**.
The push was to raise lung cancer awareness so people seek help earlier and highlighted a survey of 1500 Kiwis that found little knowledge of common lung cancer symptoms. The expectation was also there for health professionals to educate themselves and be more proactive in promoting lung cancer awareness and investigating symptoms including chronic persistent coughs.
For the past five years, Smith has seen the downside of late diagnosis – she works with patients from their GP referral with suspected lung cancer through to death – a journey that can sadly sometimes be as short as a month, though more commonly around a year for people diagnosed with advanced cancer.
The short survival rate has a Catch 22 effect. “One of the problems with lung cancer is because survival after (delayed) diagnosis is generally short, we don’t actually have a lot of people who survive long enough to be spokespeople.”
More spokespeople to raise awareness might lead to more early diagnoses, an improved survival rate of potential spokespeople and less fatalism that a lung cancer diagnosis is a death sentence.
The focus is mainly on prevention – getting people to give up or never start smoking – but 2000 people a year are still diagnosed with lung cancer and that figure is unlikely to change for some time yet.
Screening for lung cancer is also not simple, with research showing that regular chest X-rays or sputum analyses of current or ex-smokers do not reduce mortality from lung cancer; while CT-scan screening of smokers does reduce mortality by 20 per cent, it also has a 25 per cent false positive rate that increases the risk of complications from invasive diagnostic techniques.
Smith says the stigma and shame of having a smoking-related illness also impacts on awareness. “I come across a lot of people who say ‘I’ve got no-one to blame but myself’.”
“Absolutely” patients often blame themselves, agree Hutt Valley respiratory nurse practitioner Betty Poot, MidCentral NP Victoria Perry, and MidCentral lung care coordinator nurse specialist Linley Gulasekharam. The stigma and guilt means fewer people are ready to speak-up and lobby for lung cancer.
“That is why their ribbon is a clear ribbon, because it’s the unseen and unknown cancer … compared with the pink ribbon for breast cancer,” says Gulasekharam.
The Cancer Society survey also found that nearly two-thirds of respondents believed people were less likely to be sympathetic to someone with lung cancer than any other cancer.
This may be why Dr Wendy Stevens’ research* for the Northern Cancer Network found that one barrier to earlier diagnosis was GPs and patients having “nihilistic” or “fatalistic” attitudes to lung cancer. Another barrier the research found was GPs identifying when to investigate suspected lung cancer – with the strongest trigger being patients coughing up blood, but only 15 per cent of patients present to their GP with that symptom and most (49 per cent) presented with a cough.
Smith’s unscientific survey of Christchurch Hospital nurses prior to talking to Nursing Review showed all could identify a cough as a lung cancer symptom but then had to stop and think a bit harder. She says only a few could name additional symptoms that weren’t associated with advanced cancer, like lack of energy and weight loss.
“My personal view is that nurses, generally speaking, have slightly more awareness than the general public but very few could list all the common symptoms like cough, hoarseness of voice, shortness of breath, pain, and coughing up blood.”
“Some of the nurses said ‘but some of these patients have a smoker’s cough so how do you differentiate a smoker’s cough from a lung cancer cough?’”
The short answer is there is no easy answer. Finding the cause of any persistent or protracted cough can involve a lengthy assessment and history gathering and may require an X-ray to eliminate causes like lung cancer.
Betty Poot, an NP who also chairs the Respiratory Nurses Section of NZNO, runs the country’s only nurse-led cough clinic.
“There is no way you can tell the difference between a cough that is straightforward and a cough that is more serious,” says Poot.
She says a cough is one of the most common reasons people present to their GP, but diagnosing the cause of a less common persistent and protracted cough can be challenging, with for example a post-viral cough persisting for up to three months.
“So my thoughts are that you can’t say to a smoker that it is a ‘smoker’s cough’ because you don’t actually know that. But that doesn’t mean you ignore it.”
Perry say smokers often accept a cough as their lot and dismiss it to their GP or nurse as “just my usual cough”.
Gulasekharam adds that the health professional some lung cancer patients see most, pre-diagnosis, is their pharmacist, while stocking up on cough medicine and throat lozenges. “They need to be encouraged to get their GP’s advice and not keep just throwing money at symptom management.”
She also points out that not everybody with lung cancer has a cough either. They can have any other of the symptoms, ranging from a hoarse throat to pain in the chest, or they can be asymptomatic and the cancer is found during a scan for another condition.
Poot and Perry emphasise that any chronic, persistent (lasting longer than eight weeks) or protracted cough should be investigated.
Perry adds smokers or health professionals also shouldn’t assume that a person’s cough is caused solely by their smoking.
“I see it time and time again when you undertake an assessment and go through all the triggers and background, there are often other causes or reasons as well, like reflux or chronic sinusitis (that can be treated).”
So smokers shouldn’t put off getting their chronic cough assessed out of fear of cancer or believe it is a symptom they have to tolerate.
Patients are referred to MidCentral’s respiratory NP clinic predominantly for a cough after suspicious flags for lung cancer– like an abnormal chest X-ray or weight loss – have already been ruled out but, with a large proportion having smoking-related respiratory disease like COPD, Perry says lung cancer is always “on their radar”.
If a patient with respiratory disease is cleared once of lung cancer, they should be investigated again if they develop a new, chronic cough or their existing cough changes – for example, becoming more frequent, more painful, or sounding different.
“Anybody, particularly a current smoker or an ex-smoker, who has a cough that doesn’t go away should be reviewed,” reiterates Smith, who deals daily with the reality of lung cancer.
She emphasises the “anybody” as 10 per cent of lung cancer victims have never smoked.
Health professionals must promote awareness and investigation of suspected lung cancer but many also have to change their own fatalistic attitude and misconception that lung cancer is an automatic death sentence.
“I was talking to an orthopaedic surgeon the other day (about her role) and he said ‘but they all die’,” says Gulasekharam.
“My anaesthetic colleagues said ‘they all die’.” But times have changed and targeted therapies are making their mark.
“With lung cancer, you can now extend life considerably with appropriate and targeted gene therapies,” says Perry.
Not only should nurses encourage all smokers to quit, but they should also don their ‘clear ribbons’ and be an advocate for making patients more aware that a persistent hacking cough or husky voice should not be ignored until it is too late.
Common symptoms of lung cancer:
- A chronic persistent cough (more than eight weeks) that does not go away.
- Hoarseness or loss of voice.
- Repeated bouts of pneumonia or bronchitis.
- Shortness of breath or increased breathlessness.
- Noisy breathing.
- Pain in the chest, upper back or rib.
- Coughing up blood (haemoptysis).
- Low energy levels.
- Neck and arm swelling and swollen veins.
- Don’t dismiss symptoms of non-smoker.
General alarm symptoms for chronic cough include:
- Coughing up blood (haemoptysis).
- Smoker with > 20 pack-year smoking history.
- Smoker over 45 years of age with a new cough, altered cough, or cough with voice disturbance.
- Recurrent pneumonia.
- Abnormal clinical respiratory examination.
- Abnormal chest X-ray.
Facts you might not know about lung cancer:
- Lung cancer is the most common cancer death in New Zealand (1650 per year) but only a third of Kiwi men and 20 per cent of Kiwi women are aware of this, with many believing the more high profile breast, prostate and melanoma cancers are our biggest killers**.
- Late diagnosis is believed to be behind New Zealand’s poor five-year survival rate from lung cancer – 10 per cent for total population and 7 per cent for Māori – compared with survival rates of 12–16 per cent in Australia and USA.
- Five-year survival rates increase to 26.1 per cent if diagnosed at stage III disease and 53.5 per cent if diagnosed at stage 1 or II disease and as high as 73 per cent with successful surgery of non-invasive cancer.
- Mäori patients are 2.5 times more likely to have locally advanced disease when present and longer timelines from diagnosis to treatment. Pacific people most likely to have metastatic disease.
- Of 1507 New Zealanders surveyed for the 2014 Lung Cancer Health Report only 29 per cent could identify a persistent cough as a potential symptom of lung cancer.
- In the same survey, almost two-thirds of respondents believed people are less sympathetic to someone who has lung cancer, as opposed to other forms of cancer.
- About 10 per cent of people who get lung cancer are non-smokers.
Barriers to earlier diagnosis include:
- Difficulty identifying which patients to investigate and refer.
- GPs have high threshold for chest X-rays.
- GPs, most common trigger for suspecting lung cancer was coughing blood but only 15 per cent of lung cancer patients had that symptom.
- Most common presenting symptom was cough (49 per cent) but did not trigger GP suspicion as lung cancer patients often have existing respiratory disease like COPD.
- Sixteen per cent of Pacific and 8 per cent of Māori patients are ‘do not attends’ when referred and more likely to decline further investigation.
- Barriers to patient attendance include fatalistic attitudes and fear, lack of knowledge of symptoms, lack of culturally appropriate support, and transport and financial barriers.
- Many GPs and patients had nihilistic attitudes to lung cancer, being unaware that outcomes could be good if diagnosis was made early.
*Source: ‘Identifications of barriers to the early diagnosis of lung cancer and description of best practice solutions’, Northern Cancer Network (2012) principal investigator Dr Wendy Stevens et al.
- National Standards of Service Provision for Lung Cancer Patients in
- New Zealand (2011)
- CICADA: Cough in Children and Adults: Diagnosis and assessment. Australian cough guidelines summary statement (2010)
- Lung Cancer Health Report (2014) Cancer Society of New Zealand