Experiencing a Puzzling Leg Sensation Despite Health and Fitness Levels; Developing Stage Four Lung Cancer as a Non-Smoker

It’s commonly assumed that people diagnosed with lung cancer must have been smokers.

Carly Magnisalis, a single mother, found herself among a growing number of women who have never smoked but have been diagnosed with late-stage lung cancer.

Prior to receiving this life-changing news, the 45-year-old preschool teacher from Newcastle, New South Wales, considered herself to be healthy and fit, leading an active lifestyle.

She recounted her vigorous routine saying, ‘I was running 10 kilometers a day and participating in surf lifesaving and netball. Sports and fitness were always significant aspects of my life,’ she told FEMAIL.

On top of that, Carly had a full-time job and was a busy single mother of four children – and she was studying an early education degree at university. 

Everything changed in April 2021 when out of the blue Carly said she suddenly started experiencing ‘really sore bones’.

‘My bones were hurting, especially my leg bones. I thought it was just from all the running I did,’ she said.

As a precaution, Carly had a chat with her GP, who was on the front foot about sending her off for blood work and scans. Initially, the results didn’t indicate anything sinister.

Carly Magnisalis is one of an increasing number of women who have never smoked but are suffering late stage lung cancer

The mother-of-four, 45, experienced seemingly innocuous early symptoms of bone pain and fingernail pain

‘Everything came back fine – but the bone pain kept getting worse,’ Carly recalled. 

‘I had to be on painkillers all day to the point where I thought I was going crazy because I couldn’t work out what was wrong.’ 

Early on, Carly showed no classic signs of lung cancer because none of her symptoms affected her chest.

‘There was no cough, no wheezing, no shortness of breath – nothing that would allude to something going on with my lungs,’ she said.

However a more revealing symptom emerged about a month later, with Carly explaining she started to feel extreme pressure underneath her fingernails.

‘It felt like my nails were going to pop off,’ she said.

The new symptom triggered alarm bells for Carly’s doctor, who advised her to have a chest X-ray.

But at that point, Carly admits she was puzzled by a potential connection between her bone and fingernail pain and her lungs. So much so that she even took her time arranging to get an X-ray done, eventually booking it in a fortnight later.

Early on, Carly (right) showed no classic signs of lung cancer because none of her symptoms affected her chest

Carly, from Newcastle, NSW, underwent scans in 2021 that immediately revealed a large mass around her left upper lung

When she finally did the scan, Carly heard back from her doctor within hours – and the news wasn’t good. A follow-up CT scan confirmed there was large mass around Carly’s left upper lung.

‘The doctor said it was presenting as lung cancer,’ she said.

The news floored Carly given that she was a healthy, fit, non-smoker in her early 40s. But it was at this point she learnt that lung cancer was increasingly prevalent in non-smoking women.

Although the specific cause is unknown, there are a number of contributing factors for lung cancer in non-smokers, which include genetics, environmental factors, specific mutations, hormonal factors and inflammatory responses.

‘If you have lungs, you can get lung cancer,’ Carly said. 

From that point onwards, some of the more hallmark lung cancer symptoms started to emerge, including a ‘raspy voice’ and ‘coughing up blood’.

Carly was referred to a local cancer hospital in her hometown of Newcastle where she was seen by a lung doctor. A nervous Carly took a friend along for support during the appointment.

Frustratingly, the doctor that delivered the bad news was lacking in bedside manner.

‘He just flung around the computer screen showing my X-ray and goes, “Yep, it’s a big one here,”‘ she recalled. 

‘He then said, “You’ll probably just have some sort of medicine and go into palliative care. Do you have private health insurance?”‘

At the age of 41, Carly was confirmed to have 111 Non Small Cell lung cancer NSLC EGFR 21

Looking back with frustration, Carly says the doctor didn’t properly explain that the frightening term ‘palliative care’ at that stage referred to arranging ongoing medications. 

Follow-up appointments with a local private oncologist didn’t fare much better and eventually Carly advocated to be referred to someone else for a second opinion.

That person ended up being her now long-term oncologist, who is based in Sydney. Under his expert guidance, Carly, then aged 41, was confirmed to have 111 Non Small Cell lung cancer NSLC EGFR 21. 

Breaking the news to her four children Elsie, Ruby, Nic and Coen was daunting but necessary. The children, aged at the time between six and 19, were gathered by Carly for a family meeting, where she honestly explained what was going on with her health.

‘I could see tears welling up in their eyes,’ she recalled. 

‘But I assured them, I was going to fight it.’

As an added layer of difficulty, Carly’s treatment and team of medical experts were all based in Sydney, meaning she needed to regularly do a four-hour round trip to the capital city and back, and spend significant periods of time apart from her family.

At this stage, the suggested course of medical treatment was a targeted therapy tablet taken daily, which Carly says ‘shrunk’ the cancer significantly within the first three months. 

By February 2022 a thoracic surgeon was able to operate to remove the tumour, along with other affected parts of the lung.

After a tricky recovery, it took a full year post surgery before Carly started to feel like her old self. But during that time she admits there was also the added financial stress of having to stop working and trying to manage the loss of household income. 

In 2022, doctors operated to remove the tumour, along with other affected parts of the lung. Two years later, Carly received the disappointing news that her cancer had returned – and subsequently underwent chemotherapy and radiation.

By 2023, Carly finally felt she was starting to claw her life back together again. She had returned to work in a reduced capacity and was once again busy with her active family life.

Even though her follow-up appointments showed no cause for concern, Carly couldn’t escape the niggling feeling that something wasn’t right – and so she once again advocated for herself and insisted on having new tests.

In June 2024, Carly’s worst fears were confirmed after scans showed that the she now had stage 4 metastatic lung cancer with a small cell transformation. This meant she now had two types of cancer – non small cell and small cell lung cancer. 

‘I was gutted because this changed the game,’ Carly said.

‘My survival rate became less than 5 per cent.’ 

Once again, Carly upended her life and was separated from her family in order to be in Sydney for the duration of her treatment, which included four rounds of chemotherapy and five rounds of radiation. Understandably, this period took a toll both financially and emotionally.

Post treatment, the prognosis of stage four cancer continues to loom large over Carly’s head. ‘Now, these next two years are really crucial.’

Carly now continues to take a targeted therapy drug while also being regularly monitored with PET scans and MRIs as her doctors keep a watchful eye for any changes. ‘I’m living three months to three months scan,’ she said.

‘You’re just hoping you get through the next five years. Living in a world of a lot of hope is where I’m at.’ 

Carly (centre) vows to ‘keep going’ in her fight against cancer for the sake of her children, (L-R) Coen, 23, Elsie, 10, Ruby, 17 and Nic, 18, pictured with Coen’s partner, Kelsie

Despite it all, Carly remains focused and optimistic in the face of a tough diagnosis.

She is passionate about doing advocacy work with organisations like Lung Foundation Australia and is determined to destigmatise lung cancer and make others aware that it doesn’t discriminate.

Carly also wants to raise awareness for much-needed research into treating and preventing lung cancer, which will hopefully benefit future generations.

The single mother is also concerned by her own experience of having to make a four-hour round trip to a major city in order to receive quality cancer treatment – even though she lives in a major regional city.

‘My post code or finances shouldn’t determine the standard of treatment I receive or how quickly I am able to get it,’ she said. 

‘Having have to travel to Sydney for my treatment has had a direct impact on my ability to work and be there for my children.

‘We do have a good health care system in Australia and I’m grateful for that – but we can always do better.’

This July, a National Lung Cancer Screening Program will roll out across the country in an effort to diagnose lung cancer and lung diseases earlier.

As Carly looks towards her own future, the preschool teacher admits that she does have ‘moments of doubt’ that creep into her mind.

But she refuses to let it dictate the way she lives her life in this moment, with Carly saying she’s determined to take each day as it comes and keep things ‘really simple and enjoy the small things’.

‘Spending that really good quality time with my kids and just being totally available to them is a gift,’ she said.

‘As long as there’s hope, one per cent hope, I will keep trying.

‘I look at my kids and I just don’t have a choice. I just have to keep going.’