“I've always been fit and a non-smoker and was shocked when I was diagnosed with lung cancer – Natasha’s story

Published: 25 October 2023
In 2022 Natasha was diagnosed with stage 4 lung cancer in her late 40s. Due to age and lifestyle, cancer wasn’t on the healthcare professionals’ radar at first. Here she discusses her experience.

Meet Natasha

I'm a primary school teacher from Leeds. I've got two teenage children, a husband and two crazy dogs. I've always been incredibly fit and healthy up until a couple of years ago. I still run a few 10Ks, take my dogs on hilly walks, mountain bike and I used to climb.

In June 2022, I developed a bit of squeaky breathing, and my voice went husky, but I didn't think much of it. I put it down to stress, as it came and went. By the August, I thought that maybe I was developing asthma or long covid as I had a dry cough too.

My work colleagues encouraged me to see my GP. She was brilliant and gave me chest exam and said, “It all seems very clear, but there's something going on”.

She gave me some inhalers and sent me for a chest x-ray. Then she phoned and told me they’d found something on the top of my right lung. She told me not to worry, but it needed further investigation.

"I was told it was unlikely to be cancer."

Natasha is lying down to have a MRI scan.

The chest clinic decided it was likely I had Tuberculosis (TB) because of the symptoms. They investigated the TB diagnosis for about five weeks and then concluded that they couldn’t find any evidence of it.

They started investigating for cancer. I went through the cancer diagnosis process: bronchoscopies, PET scans, etc. At the beginning of December. I got my diagnosis. I was told I had non-small cell lung cancer.

The team tested me for EGFR, a genetic alteration in the tumour. I got the results quickly and they still believed I was stage three, so curable. I’d be given chemotherapy to reduce the size from 7.5cm, then surgery and followed up by a targeted therapy called Osimertinib.

"Just before my chemotherapy started we were called to see my consultant."

My consultant explained that NICE guidelines dictated that they couldn’t give me chemotherapy before surgery, it wasn’t licenced. I had to have surgery.

Whilst I waited for surgery, I had my CT scans repeated. I'd started to get headaches, which I mentioned to the team. They decided to do a brain scan as well. They found three brain metastases.

Within two hours, I was told there would be no surgery, no chemotherapy, this is Stage 4. It’s incurable.

But there was a light at the end of the tunnel Osimertinib was available as a palliative treatment. I have had a good reaction to it, my latest scan shows no brain metastases or the affected lymph nodes and I had a reduction in the main tumour - so good news.

“It took six months from symptoms to diagnosis of a lung cancer in the end.”

I had months of repeated reassurances of ‘it’s just an infection’, even after my PET scan showed activity in my lung and lymph nodes, the consultant was still seeing this as an infection.

It was my sister who got angry as I started to get panicky: I had to say, I have two teenage girls, if this is cancer, it is growing inside me and I need to get something done.

I became very frustrated because this is my life. Even when they did finally diagnose me with a cancer, the reassurances continued, telling me it’d be curable. So, I went from ‘this is highly curable’ in January to, a month later, ‘it’s terminal’. Those words are mind blowing, the first thing you think of is “how long have I got?”

"I felt like they approached it backwards, ruling everything else out before considering cancer."

I remember saying they’ve wasted so much time, money and so much of my life. I felt powerless at times, the different members of the team were fantastic at communication and support, others were less so. A consultant I saw left me so lost and so panicked, so I called the Macmillan Support Line.

I remember telling the Nurse that everything felt like a giant plate of spaghetti that I couldn’t unravel. The nurse was amazing, she helped me make sense of it all and got my thinking straight. It also helped prepare me to ask all the right questions when I had my next clinic consultant appointment.

Post-diagnosis my lung nurse signposted me to lots of support groups including EGFR Positive UK. They’ve all been phenomenal with their support and I’ve been able to get involved with EGFR Positive UK.

"Thinking of genomics and finding out I was EGFR positive was helpful."

Being EGFR positive meant I could have Osimertinib. The team, my oncologist and lung cancer specialist nurse were phenomenal. From the start they explained what an EGFR mutation meant, using helpful analogies.

They helped me understand that as the cancer was driven by this mutation in the EGFR gene, that it could also be stopped by targeted therapy and other available treatments. It was really reassuring.

As the cancer is ‘gene mutation led’, I don’t feel like there’s any blame for it. I lived as healthily as possible, I have done nothing to cause my cancer. I also found it reassuring to know that it’s not hereditary, because the mutations are isolated to just the tumour site. I was so relieved to know I couldn’t pass it on to my daughters.

The research into targeted therapies and precision medicine is progressing at such a rapid rate which I find reassuring.

I am also trying to raise awareness around gene-mutation led lung cancer. Knowledge is power, and I’ve had to do a lot of reading and research about my own cancer.

I worry about people who aren’t equipped to do that. I want to help those people and I want to make it easier for them to understand what's happening to their body. It's about the breaking down the barriers.