‘My daughter said: “Are you going to die, Mummy?”’
A mother-of-four given two years to live after a breast cancer diagnosis tells Luke Mintz drug trials bought her precious time
Sitting in the doctor’s office beside her husband, Lesley Stephen felt as if she’d entered a “state of paralysis”. It was March 2014; the 48-year-old communications consultant had been suffering from a nasty cough for three months. She assumed it was adult-onset asthma, and tried not to worry. But at the Edinburgh hospital, she was told she in fact had breast cancer that had already spread to her liver, lungs and bones. On an optimistic forecast, she was told she could live for “a couple” of years.
“I felt like I’d been shot in the stomach,” Stephen, now 55, recalls. “The nurse sitting across the table from me was in tears, holding my hand. I suspect they don’t have to deliver that message that often.”
She was plunged into a “black hole of grief ” and started arranging memory boxes for her four children, aged between six and 14. She planned to fill them with handwritten cards, to be opened by her children at each of life’s milestones: birthday cards, “Congratulations on passing your driving test” cards. She didn’t expect to see any of them finish secondary school.
But seven and a half years later, Stephen is still here. She looks and sounds cheerful as she speaks to me over Zoom from her living room in Edinburgh. Our interview is interrupted a few times by her teenage children, bustling around the house, and one time by her cat, Luna. Her defiance of the odds is explained largely by her participation in a cancer drug trial, which she only heard about by chance. Her experience sheds light on the hectic, sometimes unpredictable world of cancer treatment. Whether or not you end up on a life-saving trial can sometimes feel like a lucky dip, patients say.
It felt fairly hopeless back in 2014, in those early weeks after her diagnosis. “It was like a bereavement; absolute grief for the life I’d lost. The life I think everyone takes for granted: that you’ll be well and you’ll see all those important milestones. I felt those had all been taken away from me in an instant.”
She sat her two older children down at the kitchen table to share the news. She decided her daughter, then seven, was too young. “You know Mummy’s not been very well,” she told her sons. She noticed the younger child’s tapping nervously on the floor. He asked whether it was asthma. “No, I’m really sorry, it’s cancer,” she replied. Neither boy spoke. “I tried to reassure them. We didn’t talk about death.”
She was introduced to her oncologist, Larry, who gave Stephen his mobile number. “I’ve since learnt that’s quite unusual,” she said. Her 12 cycles of chemotherapy proved brutal. She remembers the skull and crossbones symbol on her medicine, indicating it was poisonous; and the pain of getting the cannula into her hand. Each session, there were about 40 other patients receiving chemotherapy. Some put on headphones, but most chatted about their lives, their families, the intricacies of their day. “I’d get to see the same people time after time. It sounds bizarre, but there was a bit of a community.
“I tried to visualise the chemo as little fighters, destroying those cancer cells. It won’t have made any difference, but it made me feel slightly more in control.”
She received enormous help from the Edinburgh branch of Maggie’s, a cancer charity, and one of this year’s partners for The Telegraph’s Christmas Charity Appeal. She first visited the centre a week after her diagnosis. She was introduced to a counsellor, Andy, who “just exuded calm, peace, and hope. It’s just the most amazing charity. I saw Andy every one to two weeks. Andy became as important as the medics”. Maggie’s proved especially useful when her daughter started asking difficult questions like, “Are you going to die, Mummy?” Stephen says: “I just didn’t know what to say to her. And I knew Andy [from Maggie’s] would know. So I took her down, and Andy was amazing in the way he answered her questions.
“It wasn’t just advice about how I was feeling emotionally, it was also about relationships with clinicians, side-effects of drugs, how to sleep.”
The chemotherapy proved effective, pushing her cancer back. She was put on a maintenance drug called Herceptin, which her oncologist hoped was enough to keep her stable. But a scan revealed the cancer had moved to her brain. She was given whole-brain radiotherapy followed by three cycles of oral chemotherapy.
But the cancer still grew. Stephen became desperate. She spent hours trawling online through medical databases, trying to find trials in France, Germany and Switzerland. “I was so desperate to live, with so much to live for.” She discovered a medicine called Kadcyla, billed as a miraculous drug – but it was only available in England, not Scotland. She campaigned for Scottish health authorities to approve the drug, and even met Nicola Sturgeon. At one point, she considered moving to Berwick, just south of the border. But, ultimately, the family decided to fund it themselves, to the tune of £13,000 for three cycles.
After trying the drug out, Stephen realised Kadcyla wasn’t as miraculous as some people believed. “I later found out that only two in three patients respond to it. In no other industry would a two-thirds response rate be good enough. But in the cancer world, you’re charged an absolute fortune for it.”
Stephen was in the unlucky one-third; the drug had little effect. Devastated, she was advised to “get your affairs in order”. In late 2015, she flew with her family on what was billed as a final family holiday to New York. It was upon her return that she was told there was one slot remaining
‘I had an incredibly strong response to the drug, and that response has lasted’
on an early-stage clinical trial for a new drug called Epertinib, made by a Japanese pharma company called Shionogi, at Glasgow’s Beatson Cancer Centre. She accepted. “I had nothing to lose, and everything to gain.” It was a Phase 1 trial, meaning it was simply to find out whether the drug was safe to use on humans (not to test if it actually worked).
Within 10 days of being on the drug, she felt it was working. “My breathing was better. I was able to walk upstairs.” She was scanned after three cycles. She still remembers seeing the results on her oncologist’s screen. “The scan of my lung before I went on the drug was like a Jackson Pollock painting, with white splodges all over; lungs covered in tumours. Then I saw the new scan, taken after the drug. It was like night and day. So much cancer had gone. I had an incredibly strong response to the drug, and that response has lasted.”
More than five years later, she is still taking the drug. The trial is over, but she is allowed to continue using it through what pharmaceutical companies describe as “compassionate-use access”.
Her cancer is not gone, and there has been some progression in recent years. Just last summer, part of her lung was removed after doctors found a tumour. But the drug keeps “about 95 per cent” of her cancer under control, for the time being.
Stephen is under no illusions. She knows long-term survival rates are poor. If the drug stops working – which it might well do – she could be out of options. “You live your life in three-month chunks of time, because you have scans every three months. When people start talking about events for next year, I just switch off. There’s so much ambiguity; this might be my last Christmas. Other people just live their lives and take it for granted. I can never do that.”