28-Year-Old Who Has Never Smoked Opens Up About Battle With Incurable Lung Cancer

A 28-year-old bride-to-be who has never smoked has spoken for the first time of how she is battling incurable lung cancer.

Super-fit Alisha Barnett, who competed in 100-mile charity bike rides and was a regular gym-goer, was diagnosed with stage four advanced lung cancer in December 2014 after going to the doctor with a cough.

Doctors cannot tell the Durham University economics graduate, from Borough, south London, exactly how long she has left - but warned that it will not to be more than 10 years.

She will have to take chemotherapy tablets or undergo chemotherapy sessions forever, and as a result will be unable to have children.

But despite her grave prognosis, Barnett, who works in asset management in London, said she feels lucky.

She is set to marry her partner of four years, 31-year-old Jon Douglas, on December 19 after he proposed on Valentine’s Day in Paris.

The pair will marry in an old town hall in Clerkenwell, central London, in front of 120 friends and family members, with her 25-year-old sister Sian as bridesmaid.

Barnett said: "Angry is not how I am feeling. I don’t know what I can be angry be about.

"In fact, I try not to focus on it. I don’t think about it.

"I’m quite lucky. I don’t have money or relationship worries. I have friends and family who care about me. If I am tired they notice.

"They make me dinner all the time, and look after me. The only thing I have to focus on is staying well."

Speaking about her uncertain future, she continued: "Yes, I’ve been unlucky, but I’ve been lucky in other aspects of my life.

"The doctors can’t give a deadline. Some people have survived ten years.

"However, if I came off chemo and stopped taking medicine it would be a few months. I am lucky. It sounds so lame but anyone could die at anytime.

"I don’t want to be depressed. People have a lot worse."

Her illness is a result of an incredibly rare gene mutation, which she has been told is not hereditary.

But, despite her remarkably positive attitude, she admitted she feels "mad" with people who smoke, thus hugely increasing their risk of suffering from lung cancer.

"When I told my friends and colleagues about what I had those who smoked stopped immediately," she explained.

"A few started again and I was so upset. It makes me so mad.

"Don’t smoke. Not for yourself, but for what you are potentially putting your friends and family through."

She said her parents, mum Sandy and dad David, both 65 and of south west London, had been hugely supportive.

"That’s why we want a big party after our wedding with lots of booze," she laughed. "To say thank you because everyone has been brilliant."

Barnett told how prior to her shock diagnosis – which she followed by "getting really drunk in the pub" - she was incredibly fit.

"I was a really healthy and active person," she said. "I was a regular gym-goer, keen athlete and mostly commuted around London on my bicycle.

"In 2014, I completed the three-peak challenge and in August of the same year took part in the Prudential Ride London cycle event."

It was after this 100-mile cycle ride between Surrey and London that Barnett developed a cough.

She put down to getting drenched during the cycle ride. However, when it did not shift after three weeks she visited her GP who prescribed antibiotics.

"At the same time, I began experiencing pains in my lower back when I was lying down," she said. "But I did not think the two were related.

"It wasn’t until I was in a spin class and really felt as though I couldn’t go on that I went back to the doctors.

"It was suspected that I might have pneumonia and I was sent to A&E for an urgent x-ray."

Following this, she was given more antibiotics. But when they had no affect, she used her company’s private healthcare to have further tests.

She recalled the doctor "looking really worried" as she told of her symptoms.

In December 2014, she was admitted to the Royal Brompton Hospital in central London, where she spent a week undergoing tests including an echo scan, a pet scan, an ultrasound, an endoscopy and a CT scan.

After doctors discovered an unusual amount of fluid in her lungs, she had two litres drained over a three-day period.

"It turned out that was what was causing the pain in my back," she said. "I was able to spend the weekend at home and then, the following Monday, I had an appointment where I was told I had lung cancer."

She was accompanied to her appointment by Jane Lynch, clinical nurse specialist at the Harley Street Clinic.

Barnett continued: "One of the best things was having someone to explain everything. That was really helpful.

"Jane was able to explain everything in layman’s terms to me and to my family."

Barnett was then referred to Dr Tom Newsom-Davis, medical oncologist at Leaders in Oncology Care, part of HCA International.

There, scans confirmed her cancer was stage four and incurable.

She became increasingly ill over the following three weeks, and by the time she began chemotherapy treatment in January 2015, she had a cough, chest pain, was breathless walking and had lost around half a stone.

In February 2015 she went to Paris with her boyfriend – and he proposed.

"It was really cringy," she laughed. "I think he might not have proposed had I not been so ill, but I was, so he did.

"But we’re really excited about the wedding now."

Before heading to Paris, Barnett underwent a cancer biopsy and this was tested for mutation.

It was found that she had a mutation of a particular gene called ROS1 that had caused her lung cancer.

This is very rare, and accounts for no more than one percent of lung cancer patients. Those with the mutation tend to be much younger than the general lung cancer patient population, and usually, they have never smoked.

Barnett’s genetic mutation was discovered on the morning she was due to start chemotherapy as part of a clinical trial at the Sarah Cannon Research Institute. However, in light of this new information, Dr Newsom-Davis advised she could use a drug called crizotinib instead, which had relatively few side effects.

Although this drug is not suitable for the majority of lung cancer patients, Barnett’s case is rare, and this drug targets her specific mutation.

Unfortunately, cancer cells can become resistant to these treatments and, five months after beginning the treatment, her cough returned.

In mid-2015 she began chemotherapy and, although the results were slower, her symptoms improved and her cancer began shrinking again.

Barnett has now been on maintenance chemotherapy for the past three months.

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Lung Cancer Symptoms

She said: "The scariest moment for me was when I woke up with hair on my pillow, but at least this meant that the drug was working.

"Everyone is great at Leaders in Oncology Care and it’s such a nice atmosphere. I get a great cooked meal and I’ve even had foot massages whilst I’m having my chemo, which really helps to take your mind off it.

"Coming here is like a hotel and Jane is the best – she comes to every meeting I have and I trust her and Tom’s advice and opinions.

"To others, I’d say that you really shouldn’t ignore health issues. It’s not normal to have a cough for three months and it seems obvious to me now but you shouldn’t feel embarrassed or as though you’re causing a fuss."

Dr Newsom-Davis said: "When I first met Alisha she appeared healthy. In fact no one looking at her would have thought that she had cancer. Despite this, the scans I had carried out showed that the cancer had spread to more than one place in her body, and so was classified as advanced - or stage 4 - disease.

"Alisha has had her ups and downs whilst on chemotherapy. We have had to drain some fluid from her chest and do a mini-operation to stop this coming back. My chemotherapy has made Alisha tired, and I’m sure she is fed up of having to see me every three weeks, but I think what we have achieved is quality of life.

"Alisha is living with her cancer and this is surely the aim of all cancer treatments when the option of a cure is not possible.

"As an example, Alisha is well enough to go abroad on holiday and is essentially unrestricted in what she can do.

"I am overwhelmed by Alisha’s positive attitude. She has never, ever, complained about her situation or the endless tests I ask her to undertake. I have never seen her without a smile on her face and this is testament to her character, not my treatments.

"Lung cancer does not carry the high media profile of, for example, breast cancer, but amazingly it kills more men and women in the UK than any other cancer."