Sophie Blake, 51, is a campaigner for people with secondary breast cancer, and lives in Brighton with her daughter Maya, 17. She was first diagnosed with breast cancer less than four years ago in December 2020, just before the third lockdown. Much of her treatment was delayed or cut back.
Despite being given the all clear from treatment in May 2021, Sophie remained ill for eight or nine months until being given a secondary cancer diagnosis (where the cancer had spread from one site to two or more) in May 2022.
She remembers the moment clearly. “It was 6th May, and I was in the middle of painting my front door when I got the call,” she says. “Afterwards I felt like the doors were all shut on the future: everything I planned, all my hopes and dreams for me and my daughter. We'd just celebrated her 15th birthday two days beforehand. It felt incomprehensible.”
Sophie now has stage 4 cancer, also known as metastatic or advanced cancer, which is treatable, but not curable. She was given a three-year prognosis, and now lives with side effects from treatment that affect her joints, eyesight and bones.
After being diagnosed with secondary cancer, doctors suggested that she might be able to access an emerging drug, Enhertu (trastuzumab deruxtecan), which according to new research, could boost survival time by more than a third and stall the growth of tumours by more than a year, significantly longer than chemotherapy.
The National Institute for Health Care Excellence (NICE) had recommended Enhertu for advanced breast cancer in December 2022, but since then negotiations over the price have broken down twice – most recently, on 30th July.
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The drug is available in other countries, including Scotland, and there is huge public support for it in the UK. A recent petition by charity Breast Cancer Now to offer Enhertu to NHS patients has now been signed by over 301,000 people, making it the charity’s largest ever.
Campaigners have highlighted a recent change NICE has made to the way it measures the cost-effectiveness of expensive drugs before making them available on the NHS. Where there used to be a premium of treatments that extended the end of life, its new system – the ‘severity modifier’ – has already been described as ‘harder to achieve and less generous’ than the old system by one study this year.
For people like Sophie who are living with advanced cancer, the decision not to fund this treatment feels extremely challenging. “I just feel absolutely let down. It's insulting. We are women who contribute to society, many of us still work,” she says. “A lot of women are diagnosed in their late or even mid-20s through their 30s, so not only are they diagnosed with cancer, a lot of them haven't had their children yet so they lose their fertility as well. Everything is ripped away from them.”
Sophie’s greatest struggle is the idea of her daughter having to grow up without her: “That's the worst thing. The thought of not being there for her is unbearable. I can't think about it too much, because the pain I get from that overwhelms me.”
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In spite of her diagnosis, Sophie still travels (with the help of specialist insurance) – taking Maya on a spontaneous trip to Paris a week after her diagnosis, taking a trip with her Mum, and going to Morocco with a friend. “The first week I was diagnosed, someone said to me, 'living in fear isn't living’. I know if I spent every day worrying about it, panicking about it, the time I've got left was going to be wasted. I can still enjoy as much as I can, while I can.”
Sophie still works from time to time but feels driven to keep campaigning on this issue: “The secondary cancer community is unbelievably supportive. There's a lot of loss in it as well, and it’s clear that your health can change at any moment. That's why we're all campaigning: like I said, I'm doing very well now, but I know at the next scan it could be completely different.”
Still, she wishes she didn’t have to fight. “When you're living with cancer, it's exhausting having to campaign for these drugs when we should just be enjoying our time,” she adds. “We should be being looked after. We just do not feel valued, and when you're coming to what you know is the end of your time on this planet, that's a horrible feeling.”
Rachael Franklin, interim chief executive at Breast Cancer Now, said: “We are both devastated and angry that womens’ lives will be shortened as a direct result of NICE, NHS England, Daiichi Sankyo and AstraZeneca failing to agree a solution that would make Enhertu available on the NHS in England for thousands of people with HER2-low secondary breast cancer. This was an avoidable tragedy.”
Sally Kum, specialist breast cancer nurse and associate director of nursing at Breast Cancer Now, said: “For thousands of women living with secondary breast cancer, this drug can bring them precious hope of more time to live, and neither we, nor people affected by secondary breast cancer will walk away.”
Anyone looking for support and information can call Breast Cancer Now’s free, confidential helpline on 0808 800 6000 to speak to a nurse.
