IN GOOD HEALTH Diagnosis was devastating... but I was given a lifeline by wonder drug
Deborah Linton meets the GB breaststroke champion saved by a new, Covidfriendly cancer treatment
When super-fit Karen Huizer, an international swimmer and gold medallist, found herself struggling to breathe during a training session at her local pool her coach knew something was very wrong.
The 60-year-old had been swimming since her school days, became a Great British breaststroke champion as a teenager and holds 16 records in over-25s masters swimming. So being unable to sprint underwater during one of her five, weekly training sessions, was a clear red flag that saw her coach send her straight to see her GP.
From the surgery she was referred immediately to A&E, where scans revealed six litres of fluid on her left lung. Two days later, on December 31, 2018, Karen left hospital with a diagnosis of incurable, stage-four lung cancer.
Devastatingly, the mother of two, a civil servant from Tameside, Greater Manchester, was given two years to live… until a wonder drug presented her with a lifeline.
“A few months earlier, I’d represented Great Britain in a 1,500 metres race, something I normally took in my stride, but I couldn’t move into what I call fifth gear,” Karen explains, speaking almost three years on from her diagnosis.
“I’d never experienced that in my whole sporting life. It was so out of character my coach knew something was wrong.
“I am usually such a strong person but I couldn’t process the diagnosis. I was totally devastated.”
Karen had no other symptoms. Lung cancer signs can include persistent coughing, pain when breathing and coughing up blood but rarely until the later stages. She had never smoked and lived an incredibly healthy lifestyle, running or swimming daily and training for triathlons. In the years before her diagnosis she had completed the Barcelona Marathon in three hours 30 minutes and came second in Liverpool’s triathlon.
Karen was referred to The Christie, Manchester’s specialist cancer centre, where clinical trials for a new drug, lorlatinib, were
taking place. The tablets, taken daily at home as an alternative to chemotherapy, target and shrink tumours in patients like Karen who have Alk-positive non-small cell lung cancer, a version of the disease triggered by a mutated gene that causes uncontrollable replication, and therefore spread, of cancer cells. “I was told, in February 2019, that the maximum I’d live without the trial drugs was two years,” she says. “When I was accepted on to the trial I was elated, completely overjoyed. It doesn’t work forever but it has already extended my life. I was given a lifeline.”
Lung cancer is the third most common cancer, with 47,000 people diagnosed in the UK every year and the highest number of cancer-related deaths among both women and men.
Up to 85 per cent of lung cancers are non-small cell and around five per cent of those involve Alk-positive tumours.
While the disease is closely linked to smoking, around 6,000 non-smokers die from it each year – a higher number than those who lose their lives to cervical or ovarian cancer.
Karen will remain on the trial for as long as it works and takes four tablets each day, has
four-weekly hospital checks and goes for scans every eight weeks. “It’s as strong as chemotherapy but less gruelling,” she says.
“I’d have taken whatever I needed to survive. I thought ‘If this just enables me to see my 60th birthday, I’ll be happy’.”
She celebrated that milestone earlier this year. Her first grandchild, Sienna, was born in Melbourne, Australia, last year. “The best thing the trial gave me was the opportunity to become a grandmother,” she says.
Karen had paused exercise for just six months as she recovered from an operation on her ankle tendons, carried out between her diagnosis and the start of the pandemic. She is now running three times a week again, swimming twice a week, back in spin and gym sessions, and taking one rest day. Getting back in the pool – on the first day that doctors allowed it – was nerve-racking.
“I overthought everything about my breathing,” she recalls.
Karen also works four days a week. “The understanding and shorter hours that my boss insisted upon made all the difference. Everyone going through cancer deserves that.”
The treatment is not without side effects. Karen suffers from hallucinations and takes heart tablets and statins for cholesterol to offset the high-strength cancer drugs.
“Every time I go for a scan I feel like
I’m on death row again,” she says. “I do everything the doctors tell me to the letter.
“I don’t want to be ailing. Staying fit and active is the only way I can live this. I used to be a party animal, now I’m in bed at 9pm.”
Drugs like Karen’s are sometimes known as kinder or “Covid-friendly” cancer treatments because they can be taken at home and are less aggressive than chemotherapy.
The Christie’s Professor Fiona Blackhall described them as “putting the brakes on cancer”, adding, “Karen has done exceptionally well during this clinical trial.”
Karen hopes her story will encourage others to check for possible cancer symptoms. “I had no discomfort or obvious signs but what happened rang alarm bells,” she says. “If in any doubt, get checked.”
Karen doesn’t plan to compete again but she does hope to fly to Australia one day.
“My granddaughter just turned one and I’ve only seen her over video. I hope to hold her in person.
“A cancer diagnosis can make people feel bitter and angry but I feel gratitude that I’m able to continue for as long as I can. Every day beyond those ‘two years’ is a bonus. I’m appreciative of each moment of every day of my life now.”
■■November is Lung Cancer Awareness Month. Find out more at roycastle.org
I don’t want to be ailing, staying fit is the only way I can live this