Injections, intravenous (IV) lines, blood tests and implanted ports can lead, not surprisingly, to children being anxious and fearful about needles. Child health nurses muster all their skills to reduce the risk of distress – using the right words, play and distraction techniques, the support of the children’s caregivers and appropriate pain relief.

The ‘go-to-treatment’ for topical pain relief, says Rachel Wilson, a clinical nurse specialist at Christchurch Hospital’s Children’s Haematology and Oncology Centre (CHOC), has been topical anaesthetic creams, but they come with their own side effects and complications. And, as she told the recent Clinical Nurse Specialist Society conference, for some children the most distressing part of a procedure can be removing the dressing holding the anaesthetic cream in place. Or if a child is needing urgent intravenous fluids or medication, there may not be enough time for the anaesthetic cream to do its job, resulting in a painful experience for the child.

The research literature shows that children who are exposed to poorly managed and painful healthcare procedures are more likely to demonstrate increased pain perception, pain behaviours and medical fear later in life, says Wilson. That is why her eye was drawn to an item in the Children’s Healthcare Australasia (CHA) newsletter about a simple pain-numbing device being used at the Royal Children’s Hospital in Melbourne for more than 5,000 intravenous (IV) cannulations, with overwhelmingly positive feedback from patients.

Called CoolSense, the small handheld device was first developed for dulling the pain of Botox injections and the like in the cosmetic sector. The device has a temperature-controlled head that cools and numbs the injection site. “It takes only 10 seconds to work before the injection can be given,” says Wilson. “It is simple, it is allergy-free and it is immediate – a no-brainer.”

And, unlike using an ice pack on a wriggling child, the device’s small round head enabled a precise and controlled numbing of the injection site area. Wilson says that, also surprisingly, despite the sudden chill, using the device didn’t cause vasoconstriction of a child’s vein so veins still ‘popped up’ and were accessible.

So with the support of CHOC charge nurse manager Chrissy Bond, it was decided to trial CoolSense on CHOC patients in May 2016, using the numbing applicator not only for IV cannulation but also venepuncture, accessing ports and giving subcutaneous and intramuscular injections. The CHOC nurses were trained in using CoolSense and, depending on the age of the child, prepared the children for the sudden cold of the device by talking about it being like a frosty Canterbury morning or giving younger children a lick of an iceblock.

“Very quickly the CoolSense became known as the magic wand,” says Wilson. “One of our patients – she loved it – said the only thing that was wrong with it [the ‘magic wand’] was that it wasn’t pink and it didn’t have ‘bling’.”

The trial was not without its hiccups: a week in there were reports of skin tissue injuries so the team stopped using the devices to investigate. They discovered there was an undetected fault with one device, which meant the cold metal applicator head (or pin) had shifted
and was no longer touching the alcohol gel pad.

“It is the alcohol that protects the skin from the very cold [applicator] head that you are pushing against the skin [for 10 seconds],” says Wilson. “So we were, in fact, causing [ice] burns to these children.” This led to refining the procedures and updating the education package to ensure that nurses checked there was no gap between the metal head and the gel pad, recorded which device they used, used a watch to time the 10-second application, and the devices were not stored in a freezer colder than -10oC.

The team then reintroduced CoolSense and, the second time around, the ‘magic wand’ was rated a winner in a survey of CHOC parents (31 respondents or 80 per cent of CHOC children in trial). More than 83 per cent of respondents believed that CoolSense was more effective than the creams; more than 90 per cent agreed that using the numbing devices saved time; about 85 per cent believed it worked well in numbing their child’s skin before needle insertion; and 87 per cent would recommend the device to other parents.

Less pain and fewer dollars

Wilson says another plus for the numbing applicator was the potential for cost savings.

“Even though as nurses we like to pretend we don’t want to know about it [money], it is actually very important as we all work with a budget that is limited.”

She says the topical anaesthetic creams they traditionally used took an hour for optimal effect and cost between $6.75 and $9 per 5g tube, leading to an annual bill for Canterbury DHB’s child health services in excess of $60,000.

In comparison, a CoolSense applicator costs about $160 and each device comes with an alcohol cartridge lasting 350 applications. Wilson says the cost of the device and replacement cartridges average out at 22 cents per use – so potentially there could be a saving of $8,780 per 1,000 uses.

CoolSense training is now a routine part of orientation for new nursing and medical staff in child health, says Wilson. The numbing device was also being used beyond child health services in other hospital areas where children are treated, including intensive care, radiology, emergency and operating theatres.

The innovation was the runner-up in the improved quality and safety experience category of Canterbury DHB’s Innovation Awards last year and Wilson and the Child Health team have also presented their findings across the Tasman, as well as at the recent Australasian Nurse Educators Conference.

“We are providing the evidence and getting it out there for people to show how this very little piece of technology can change outcomes for children,” says Wilson. She says pushing for innovations and implementing something new did take some courage and tenacity.

“You have to have passion for it – people ask me do I actually have shares in CoolSense because I keep going on and on … and I still am,” laughs Wilson. “But it just goes to show that small innovations can grow into evidence-based best practice, delivering improved health experience outcomes for our patients.”

And maybe fewer children will now have memories of their time in hospital as human pincushions.

RESEARCH STUDY

The initial research into using CoolSense at Melbourne’s Royal Children’s Hospital was recently published in the journal Anaesthesia and Intensive Care by paediatric anaesthetist Philip Ragg.

The prospective observational audit of 100 children and adolescents (aged 6-18 years) looked at the patient and carer satisfaction rates with using the device and how effective it was in reducing the pain of intravenous cannulation.

The study found that 94 per cent of patients rated the pain during cannulation as less than or equal to three on a numerical pain rating scale of zero to 10.

Patient and carer satisfaction with the device and cannulation success rates were also high; 66 per cent of patients and 82 per cent of carers ‘really liked’ the device and 28 per cent of patients and 12 per cent of carers ‘liked’ it. Ninety-five percent of patients were cannulated on the first attempt.

The article concluded that the device appeared to be a useful tool that provided effective analgesia for intravenous cannulation in children with minimal complications.

Source: Ragg P et al. (2017) A clinical audit to assess the efficacy of the Coolsense^® Pain Numbing Applicator for intravenous cannulation in children. Anaesthesia and Intensive Care 45(2)

My chemotherapy in 2015 and 2016 left me with something called ‘peripheral neuropathy’, a fancy term for nerve damage in my legs.

Chemotherapy works on the principle of killing things that are growing in your body (preferably the cancer, but also stuff like hair), and unfortunately nerves fall into that category.

It doesn’t affect all chemo patients, but a good number. It meant that I couldn’t walk properly for a few months, because the messages from my brain weren’t getting to my legs.

Nerve damage is an area where medicine doesn’t really have a solution. I was told that my nerves may heal, or they may not, and it was a waiting game to find out. Nerves are one of the slowest growing parts of a body, so it was a long waiting game. In that time, my family and I consulted with my doctors and assessed what alternative treatments I could safely have.

After seeing a naturopath, I was given a bunch of supplements to take – nothing particularly unusual, just things like folic acid, vitamin B, a few others. Long story short, my legs improved, and are now back to 100 per cent. Now we’ll never know if the ‘natural medicine’ played a part in that, or whether it would have healed regardless. I’m glad I took them either way.

Some of the biggest highlights of my work are the connections I get to make with the people I meet. It’s such an honour to be able to share my story, and to hear other people’s stories in return. Those stories are often about cancer, and often situations that are still ongoing at the time.

Over the past few years, I’ve had a handful of people reach out to me with stories involving patients being encouraged to, and deciding to deny clinical treatment for cancer, to instead trial alternative medicine first. Not after, not during, but instead of chemotherapy or radiation.

To put it bluntly, people are trying to beat cancer with alternative medicine, and are dying in the process.

A cursory Google search found two cases this year in New Zealand and that is only the people who have gone to the media. I would imagine the true number would easily be in double figures. It is a hidden issue in our country.

I am personally aware of people who were diagnosed with highly treatable cancers, ones they most likely could have beaten, and who died because they went against all medical advice and reason. I’m not able to give specific details of the situations out of respect, but I’ve had several messages on my Facebook page in recent years along these lines.

These people truly believed they could beat their cancers by cutting out sugar, or meat, or by drinking juices. And it leaves me both irate and desolate, because it plays on my conscience.

At the core of this issue are naturopaths, like the ones I went to, who more often than not are the ones perpetuating these treatments to cancer patients. Not all naturopaths, but some.

In New Zealand, unlike in many other countries, naturopaths need no qualifications, training, or regulation. Anyone can be a naturopath – I am, you are (put that on your CV), your neighbour is. If you want to call yourself a naturopath, you can.

I see no fault in naturopathy as a field. It generally does no harm; it often does benefit. Naturopaths have helped me, my family, people I know, with their treatments. But the fact that they face no regulation is dangerous.

Even the New Zealand Society of Naturopaths is asking the government for regulation. But nothing is happening, they’re not being given it, and misled people are dying.

Why is the government not stepping in and taking some ownership?

Their role is to care for the vulnerable, and anyone who can be misled into trying fruit juice enemas to cure their life-threatening disease, instead of proven science, is certainly vulnerable. It’s time that regulations was placed around naturopaths to prevent any attempts to treat life-threatening illness, unless it is in conjunction with medically recommended treatment.

Undeniably, there is huge benefit in building up stores of vitamins and minerals through living a healthy lifestyle. While your naturopath won’t be able to cure your cancer, they may be able to reduce the chances of you getting cancer – but then again, you can do this yourself just by living a healthy lifestyle.

So once more, I don’t have an issue with alternative medicine. I’ve used it, I think it might have worked for me. I would seek it out again in the correct circumstances. Feel free to try it yourself, but not if your life depends on it.

Try it in conjunction with the recommended treatment for cancer, try it if there’s no other option, do not try it if the doctors are telling you to do something else instead.

The time for alternative medicine is when all alternatives are exhausted. When medicine has no solutions to offer.

Because if medicine still has solutions to offer, it does so because they work. They are proven. They used to be called ‘alternative medicine’, and now that we know they work, they’re called ‘medicine’.

The newfound trend of people deciding they know more about medicine than their doctors do is mindboggling.

I’ll stay away from talking about anti-vaxers. I can’t imagine what it must be like for the doctors, knowing they could save lives if it weren’t for brainwashing and misinformation. I find it hard enough just reading messages from these people who are committing suicide by naivety.

Oncologist Dr Anna Bashford will speak on new drug research recently approved for use in New Zealand. Nurses Vivienne Maidens and Sarah Munro will speak about research into reducing hair loss from chemotherapy and monitoring side-effects.

The webinar is on Tuesday August 1 2017 from 7pm to 8pm.  More information here

About 30,000 Wairarapa and Hutt Valley residents aged between 60 and 70 will be invited to do the screening test over the next two years following the successful pilot running in Waitemata DHB since late 2011.  Waitemata will transition to the national programme from January 2018 followed by Southern and Counties Manukau DHBs with the national rollout to be completed by 2020.

Coleman said that the latest data shows 4,437 patients received a colonoscopy in May 2017 which was the largest number in a single month since data collection began in July 2012.

Every year around 3,000 New Zealanders are diagnosed with bowel cancer and more than 1,200 die from it. Coleman said once screening was available nationwide it was expected that up to 700 cancers would be detected annually.

Further information on the National Bowel Screening Programme is available at www.bowelscreening.health.govt.nz

Fiona Sayer got a call this particular day from Waikato Hospital’s oncology department to say that the latest blood test of Julie – a 54-year-old breast cancer patient who had had metastatic disease in her bones – did not look good, with disturbing liver function results. They were requesting a CT scan.

Sayer, the oncology/haematology nurse coordinator of the small rural hospital in Thames, rang Julie, who already knew that something was wrong as new and worrying symptoms had emerged. Julie came into Thames ED, which was very busy that day, and after her scan was transferred with her husband to Sayer’s chemotherapy room to wait for the rushed ED doctor to interpret the result.

However, underway next door was the weekly telehealth clinic run by Julie’s Hamilton-based oncologist and Julie jumped at the opportunity to have her own oncologist deliver – via the TV screen – what she expected could be, and was, devastating news, rather than an ED doctor. With her husband holding her left hand and Sayers her right hand, Julie heard that the cancer was now in her liver, there were no further intervention options and the care plan would be comfort cares and symptom management.

Tough news to receive via a television screen, but Sayer points out that telehealth meant the care outcomes for this patient was a timely prognosis from her own oncologist – a person whom she knew and who knew her – and with whom she was comfortable asking clarification questions. Sayer says it also gave her patient and her husband a chance to thank the oncologist and bid him farewell. And she left the telehealth clinic with a developed care plan, the necessary referrals completed and prescriptions signed for her immediate needs.

Zoom conferences reduce infection risk for CF adults (Robyn Baird, Christchurch Hospital)

Robyn Baird is a clinical nurse specialist working with the about 85 adult clients with cystic fibrosis (CF) spread across the South Island – both urban and rural. New treatments mean that more and more people with CF are surviving into adulthood, with about 50 per cent of the CF population now aged over 16.

The Christchurch Hospital-based nurse says recommended best practice for CF patients is quarterly review by a multidisciplinary team and since 2012 Canterbury’s Adult CF Service has been offering telehealth video conferencing for clients from secure hospital-to-hospital video conferencing facilities. But Baird says not all areas have these facilities; many patients still have to travel and the risk of infection or cross-infection is a major concern for CF adults.

So the service decided to investigate in-home telehealth options and decided on the option of clients downloading the free videoconferencing software Zoom to the clients’ own devices (like laptops, home computers or tablets). Pros included easier access for clients, reduced infection risk and minimal costs. But cons included individuals needing adequate broadband speed, additional equipment to allow videoconferencing (i.e. camera/headphones/laptop), and some clients being unable to upload information to the conference, such as portable spirometry.

After a trial and pilot with suitable patients, the Zoom conferencing is being used successfully to replace the inpatient scheduled review for some rural remote patients, and also for some palliative patients and those awaiting transplant. It has also been used to review patients on home IV treatment and those requiring close follow-up. Baird envisages that future uses could include virtual exercise classes for CF adults to reduce the infection risk of in-person classes.

Virtual vascular clinic gives patient power (Sandra Almeida, Auckland City Hospital)

Sandra Almeida looked to nurse-led virtual clinics by telephone to provide a more timely and convenient service for the abdominal aortic aneurysm (AAA) patients she works with as a clinical speciality nurse (CSN) at Auckland City Hospital’s vascular services.

These clinics are particularly useful for patients needing ongoing surveillance after an endovascular aneurysm repair (EVAR) of an AAA and those undergoing AAA surveillance (EVAR uses stents and has replaced open aortic surgery as the treatment of choice for AAA, but it can have post-op complications years down the track.)

Almeida says normal practice was that patients on surveillance have scans (usually six-monthly) and then wait for a face-to-face appointment with a consultant for the results. The feedback from the often elderly patients was that coming into an outpatient clinic just to be told that their results were okay was seen as a waste of time.

After investigating the evidence for virtual clinics, Almeida proposed and piloted the option of virtual clinic appointments by phone instead. Under the virtual clinic model, Almeida attends the multidisciplinary meeting where the vascular team discusses the scan; she then phones the patient to inform them of the outcomes and any proposed investigations and management, as well as offering them education, answering questions and giving advice on what to do if they get any adverse symptoms – i.e. head to ED straightaway.

Almeida stresses that virtual clinic patients are given the opportunity for a face-to-face appointment to discuss any concerns; patients who are cognitively impaired or mentally ill always have face-to-face appointments. She says telephone consultation requires a significant amount of knowledge, skill and judgement because of the lack of visual interaction and the decreased chances for patients to raise concerns instinctively.

Some elderly patients and cultures also believed they should only see a doctor, but overall the five-month pilot – involving 116 patients in the first half of last year – showed high patient satisfaction and the take-up of clinic offers is still growing. Almeida says the virtual clinic is improving patient satisfaction and is also freeing up outpatient clinic appointments for new referrals and saving the service funding.

Silent suffering

Simcock sees the results of women being too shy or embarrassed to raise the topic of their vulval health. In her presentation last year, she shared the sad tale of an “absolutely delightful” woman in her 70s who presented to hospital as being generally unwell and “off her legs”.

The woman’s husband told hospital staff that he knew something was wrong as she was increasingly housebound and he kept asking her to go to her GP, which she had done several times with minor complaints in the previous few years.

In the first 48 hours after admission the medical team found nothing wrong with her but that she was uncomfortable and had noticed a “funny smell”.  On the third day after admission a CT scan was done and they discovered 9cm nodes in her groin.

The woman was sent to Simcock, who examined her and discovered a “huge tumour” replacing the entire perineum, a tumour so large that the poor lady couldn’t sit properly – the cause of her discomfort.

“She had been in hospital for more than 48 hours and nobody had looked below her belly button,” recalls Simcock.

She says the woman was aware that she hadn’t told anybody what was the cause of her discomfort but Simcock also noted that nobody had asked her.

Simcock shared another story of a young woman who had been referred to colposcopy for low-grade cervical smears, but it was several years later that she mentioned that she had also had a vulval itch for four years. On referral to Simcock, the 28-year-old woman was found to have high-grade pre-cancerous cells of the vulva – caused, as in cervical cancer, by high-risk HPV infections – that are known as VIN3 (vulval intraepithelial neoplasia) and these cells had to be cut away. “We’d been seeing her but we hadn’t looked properly.”

Another young woman in her 20s, a smoker who took occasional drugs, presented after having had a vulval itch for two years and was also found to have VIN3 due to HPV infection, which had to be removed by surgery.

Simcock says vulval cancer is a rare cancer, with probably only about 10–15 cases a year in Christchurch, and the vast majority of all vulval cancers (95 per cent) are squamous cell cancers with the remainder being melanomas.

Vulval cancer is a cancer that is most common in older women but it can also be seen in young women. There are two pathways for vulval cancer. One is infection by HPV or wart viruses that many women are exposed to, but some get high-risk HPV infections that lead to pre-cancerous VIN, a condition that is more common in smokers and the immune suppressed.

The other is through a chronic and benign skin condition known as lichen sclerosus, which can cause an itch that Simcock says prompts many women to wash more frequently, thinking they must be dirty, which can make them even itchier. The cause is unknown, but it is associated with autoimmune diseases and about 1 in 20 women with the condition will develop a cancer.

Listen, look, educate, encourage

Simcock says the take-home messages about vulval cancer for nurses working with women is to listen, look, educate and encourage vaccination against HPV, which can reduce the risk of vulval, as well as cervical, cancer.

See also related gynaecological cancer articles: Gynaecological cancers: silent no longer and The cancer that screening and vaccine can prevent

You can rarely get through the supermarket aisles or glance through a glossy magazine without coming across a Pink Ribbon promotion or something to do with breast cancer.

But when it comes to the other ‘feminine’ cancers – those that begin in women’s wombs, ovaries, cervixes or vulvas – we see or hear much less.

This may partly be because breast cancer is much more common – roughly 3,000 diagnoses in New Zealand each year, compared with around 1,000 for the five main gynaecological cancers combined, and it may also be because breasts are more socially acceptable to discuss than ‘down there’. A survey last year by British gynaecological cancer research fund The Eve Appeal found that 39 per cent of women believe there is a greater stigma around gynaecological cancers than other types of cancer.

The lower profile of gynaecological cancers may also, sadly, be because there are fewer survivors to advocate for greater awareness. The most deadly of the gynaecological cancers – ovarian cancer – has a five-year survival rate of 40–50 per cent, compared with closer to 90 per cent for breast cancer.

The New Zealand Gynaecological Cancer Foundation was founded in 2006 with one of its major aims being to help raise awareness of the signs and symptoms of gynaecological cancer so that more women’s cancers are detected earlier and more lives are saved.

The longest-serving member of the Foundation’s board of trustees is Dr Ai Ling Tan, one of the country’s handful of certified specialist gynaecology oncologists. Gynaecological oncologists first complete training as obstetrics and gynaecology specialists and then do an additional three years of sub-specialty training focusing mainly on the specialist surgery required but also covering all aspects of the diagnosis and care of women with gynaecological cancers.

A major part of Auckland-based Tan’s work – and her counterparts in Auckland, Christchurch and Wellington and their multidisciplinary teams, including gynaecological cancer nurse specialists – is working with the, on average, about 300 new cases a year of ovarian cancer and 500 or so uterine (mostly endometrial) cancers.

New Zealand currently has seven or eight gynaecological oncologists, five of whom have RANZCOG certification, and it is estimated that we need at least 11. There is also a shortage of gynaecological cancer nurse specialists, who have a core role in the patient’s journey.

The not so ‘silent’ disease

When people do talk about ovarian cancer, it is often referred to as the ‘silent killer’.

It was historically given this lethal label as the symptoms were not thought to emerge until the chance of cure was poor.

It is true that in the majority of ovarian cancer cases there is no disease-specific early warning sign, like a breast lump or abnormal bleeding, and no screening programme like there is for breast and cervical cancer. So by the time most women are diagnosed with ovarian cancer it is often a stage III cancer and has spread throughout the abdominal cavity.

But in recent decades – as treatment improved and evidence grew of consistent, though non-specific, symptoms that could lead to earlier diagnosis – there has been a backlash against the ‘silent killer’ metaphor. In 2007 the American Cancer Society, the Gynecologic Cancer Foundation, and the Society of Gynecologic Oncologists announced for the first time a national consensus around the early signs of ovarian cancer and a similar consensus was released in the UK in 2008. At the same time, the American Cancer Society disassociated itself with the term ‘silent killer’ for ovarian cancer, saying it was “a catchy phrase” but it was wrong.

Ai Ling Tan agrees, saying people call it the silent disease “but in actual fact it is not that silent”.

She says the research from Australia and the US shows many women who present with ovarian cancer have had symptoms for more than six months. Their symptoms include feeling consistently bloated, having difficulty eating/feeling easily full and persistent pelvic and abdominal pain (see also sidebar). The symptoms may be non-specific, but if they are new, persistent and worsening, women should talk to their GP or NP.

“Most women when I sit and talk to them will say that they had A, B, C or D symptom but thought it was due to menopause or something else.”

Tan believes greater awareness of ovarian cancer symptoms could see more women diagnosed earlier, along with women being persistent in seeking answers if the symptoms continue or worsen. “If the GP doesn’t investigate then ask again or get a second opinion.”

About one in 10 ovarian cancers are genetic cancers. Tan says while genetic cancers make up a small proportion of ovarian cancers, it is a proportion in which women can be proactive. A mutation, particularly in the BRCA1 gene, but also in the BRCA2 gene, is associated with an increased risk of ovarian and breast cancers.

The most well-known example is Angelina Jolie, whose mother and grandmother both died of ovarian cancer and her aunt of breast cancer. After testing positive for the BRCA1 gene, Jolie first underwent a prophylactic mastectomy and then the removal of her ovaries and fallopian tubes.

In New Zealand it is advised that if there are two or more cases of breast or ovarian cancer in a woman’s close family then women should seek advice from their doctor (see sidebar p.22 for link to Gift of Knowledge website for more information).

Ovarian cancer treatment

The most common ovarian cancer is epithelial cancer, which Tan says can have two disease pathways.

Some women present early (stage I or II) with a lump, but the majority present later (stage III) with widespread disease within the abdomen. The later presentation cancers require surgery to not only remove the ovaries and uterus but also ‘debulking’ surgery to remove as much of the tumour tissue as possible from within the abdominal cavity. The surgery is usually followed by a course of chemotherapy.

Tan says the “major, major surgery” required can take between four and seven hours and the research data indicates that women with ovarian cancer operated on by gynaecological oncologists have increased survival rates. She says this is because of the specialist surgery required, the gynaecological oncologists’ understanding of the total disease, and the fact that they work as part of a multidisciplinary team, including medical oncologists, pathologists, radiologists and specialist nurses.

Christchurch gynaecological oncologist
Dr Bryony Simcock was quoted last year in The Specialist, the Association of Salaried Medical Specialists’ magazine, saying “gynaecological oncology in New Zealand provides a world class service in less than world class conditions”.

The five-year survival rate for all ovarian cancers has been improving, with Tan saying the survival rate for early stage ovarian cancers is about 80–90 per cent and for stage III, which is what about 75 per cent of women present with, the survival rate is about 40-50 per cent.

Don’t ignore abnormal bleeding

The most common gynaecological cancer is endometrial cancer – that is, cancer of the lining of the womb.

Unlike ovarian cancer, more women are diagnosed in early stage endometrial cancer because they present with abnormal bleeding. Also unlike ovarian cancer, where the vast majority of cases occur in women aged 45 or older, currently around half of the endometrial cancer diagnoses are in women under 65.

The earlier diagnosis also means higher survival rates, with New Zealand’s latest cancer survival statistics showing a five-year survival rate of 78.5 per cent for uterine cancers in general. (Endometrial cancer makes up the majority of uterine or womb cancers, with the other forms of uterine cancer being more rare).

But Tan says greater awareness is still needed amongst women in general about what is abnormal bleeding (see symptoms sidebar).

“My big message is to tell women that if you have any bleeding after menopause – that is not normal.”

“One of my major hobby horses is women who are post-menopausal who think bleeding after menopause is normal,” says Tan. She says unfortunately there are a lot of women out there who think that it is. “My big message is to tell women that if you have any bleeding after menopause – that is not normal.”

Tan says nurses can play a huge part in promoting awareness of gynaecological symptoms, like abnormal bleeding, when they work with female patients – particularly in general practices but also other settings.

“I always tell the practice nurses I talk to that they have a fantastic opportunity for education, promoting awareness and responding to concerns that could turn out to save someone’s life,” says Tan. “Because a woman might not be telling the GP that she is having post-menopausal bleeding as she thinks it’s embarrassing – particularly an older woman. They usually have a much better rapport with nurses as they feel more comfortable with them.”

Obesity a risk factor

Obesity is a known risk factor for endometrial cancer, which Tan says is an important link as
New Zealand is starting to see more cases.

The Cancer Research UK website, in a posting from late last year, says studies show an increased risk of breast and womb cancer in women who are overweight or obese after menopause. It quotes Professor Martin Wiseman of the World Cancer Research Fund saying that he is in no doubt that oestrogen made by fat cells is a leading culprit in post-menopausal breast and womb cancer as too much oestrogen can encourage breast and womb cells to “keep dividing when they shouldn’t be”.

Tan agrees there is good biochemical data about the impact of obesity on hormones like oestrogen, which impact on the lining of the womb. She says studies have also shown that unless overweight women who have been treated and cured for endometrial cancer lose weight and maintain a healthy lifestyle, they risk dying within five to 10 years of a cardiovascular event.

“In America, they tell every woman who has had endometrial cancer, and who is also overweight, that they need to lose weight,” says Tan, who believes it is important that women are informed of the relationship between obesity and endometrial cancer.

See also related gynaecological cancer articles: The cancer that screening and vaccine can prevent  and  We need to talk more about vulvas

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.