41-year-old Alice Taylor said her lung cancer diagnosis came out of the blue. Photo / George Novak
Alice Taylor doesn't smoke, she keeps fit and doesn't eat meat.
That's why the news of a rare lung cancer diagnosis came as a big shock to the Tauranga physio.
"It was not on the radar at all."
The 41-year-old is sharing her story of an "out of the blue" diagnosis as part of Lung Cancer Awareness Month this November in a bid to raise awareness of the "silent cancer".
Taylor's rare diagnosis all started with a "mildly annoying niggly cough" that just wouldn't go away.
Taylor was diagnosed with Stage 3B ALK-positive lung cancer in August after seeking treatment to suppress her cough, which had lasted about six weeks.
ALK-positive lung cancer is caused by a mutation of the ALK gene inside the cancer cells.
It stands for anaplastic lymphoma kinase.
While it was a rare form of lung cancer, it commonly occurred in younger people and those who did not smoke.
The Tauranga physio said it started to become uncomfortable when she was working with patients.
At the time she was running regularly, playing soccer competitively and coaching her daughter's team.
"I was just really embarrassed coughing around people because of Covid-19.
"The only reason I went to the doctor was that you just can't cough in public these days."
An x-ray found a mass in her lung, with a follow-up CT scan showing cancer had spread into her chest and lymph nodes in her neck.
Taylor couldn't quite put into words how it felt when she first heard the news.
"It was pretty shocking, I think, just because it came out of the blue.
"I don't smoke. I play football. I don't eat meat. I do all the right things - lung cancer was something I wasn't even aware that could happen."
After the diagnosis, she put a pause on her work as a physio to focus on her own wellbeing.
A Givealittle page had been created to support Alice and her husband Jake financially and to raise funds in case non-funded Government drugs were needed further down the track.
"It is a scary thing to know they just can't cut it out. I will never be without cancer - but it can be managed and treated."
Taylor was currently receiving targeted therapy in an oral pill form, which was working to suppress the cancer.
Aside from fatigue and a sporadic "gnarly" rash she wasn't experiencing any major side effects from this treatment. Daily naps were a necessity to ensure she didn't burn out.
But Taylor was still able to train with her football team each week, which was "good for mental health".
"I am trying to keep myself as active as possible while I am going through treatment, but my energy levels are not what they were."
Scans taking place this week would determine whether or not the treatment was working.
She had been upfront with her daughters - aged 10 and 12 - about her diagnosis since day one.
"I made a promise to them on that first day that I wouldn't ever lie to them. The reason why I wanted to be honest with them is to reframe it a little bit. To see cancer in a different way."
Taylor's perspective on life had shifted since the diagnosis, with her now "acutely aware" that life was limited.
"But at the same time I know that is the same for anyone. No one knows how long they have got."
She was trying to "make the most of being alive, spending time with those close and planning trips.
"Not just cancel everything because I have got cancer.
"We had a fast pace of life prior to this. I worked a lot. It definitely changes my outlook on life, and what is important."
Taylor's mum, who lives in the UK, wanted to come to New Zealand to support her daughter. She was granted a visa to enter the country under exceptional circumstances.
But she couldn't secure a spot in MIQ, which Taylor said had "taken quite a toll."
"It is tough for her not being here.
"She just wants to come and support me through it. We are just hoping that happens sooner rather than later."
Taylor's message to people was that "anyone with lungs can get lung cancer".
"It certainly wasn't anything on my radar. The main thing is just knowing it can affect anyone."
Bay of Plenty District Health Board medical oncologist Richard North said only between two and three per cent of lung cancers had an ALK mutation.
However, he said it had a "highly effective, low toxicity treatment" that could suppress cancer for several years.
The treatment - which was taken in tablet form - worked to inhibit the ALK gene. Essentially, it "switched the cancer off", he said.
"These are cancers, which have a very good treatment attached to them."
He reiterated this treatment was not a cure for cancer.
North said in general the illness was a "silent cancer", typically caught at a more advanced stage. This is because by the time symptoms like a persistent cough and shortened breath presented it had often spread outside of the lungs.
He encouraged people who had a persistent cough or shortened breath with no other obvious cause to pursue medical investigation.
He said of all lung cancers roughly 10 per cent occurred in those that had never smoked - some of those which would have an ALK mutation.
A Managed Isolation and Quarantine spokesperson acknowledged that there were many people in "really difficult situations" as a result of the pandemic.
The spokesperson said a change to the MIQ model from November would help provide more rooms for international arrivals through regular lobby releases, though not substantially.
"Modelling for the number of rooms needed for high-risk community cases is not yet conclusive enough.
"We also need to continue to allocate rooms for groups, critical workers, emergency cases and time-sensitive travel."
The managed isolation system is operating at near maximum capacity.
Police arrested 20 Greazy Dogs members over alleged meth crimes in Bay of Plenty.