As a seven-year-old girl, I thought my grandmother’s mastectomy was all part of a magic act. She would smuggle family jewels from Iran when she visited us. I was transfixed by her unfurling sparkly golden necklaces she’d snuck into her empty bra cup. The missing breast was all part of the trick. I had no idea then of the pain caused by breast cancer. Or how it can erode your sense of self, as an articulate adult, as a woman, and as a mother.
But last year that all changed.
Despite checking my breasts regularly, and going to the GP as soon as I found a small lump, it transpired I already had Stage 3 breast cancer. The tiny nodule I discovered was just the tip of a spider’s web-type tumor, already 11.3cm across my breast and rapidly dividing in my lymph nodes. My mammogram and ultrasound showed nothing. But my armpit was tender, so biopsies were taken and an MRI was done.
My type of breast cancer – invasive lobular carcinoma – is not easy to spot. Most breast cancers start in the milk ducts and the tumor cells clump together, making them feel like distinctive lumps, more easily detectable.
Lobular cancer – which accounts for one in 10 cases – is sneakier. Because of a missing protein, the tumor cells do not stick to each other in the same way to form solid masses. Instead, these spider’s web tumors are less easy to feel. Symptoms could simply be a hardening of the skin, or swelling in the breast, or, as in my case, the armpit.
In the UK, more than 5,500 women are diagnosed with invasive lobular carcinoma every year. But often their diagnoses are late. Sometimes too late. When it became clear how advanced my cancer was, my surgeon wanted to start treatment immediately. I was at The Royal Marsden in London, a standard bearer in cancer care that also benefits from charity funding. But even at the Marsden, the pressures on the NHS are inescapable. Especially last year, when the country was reeling from a Covid backlog and 327,000 people were on the cancer waiting list in England alone, with 34,000 people failing to get treatment within the Government target of 62 days – the worst backlog on record. Almost 10,000 people were still not receiving treatment within 104 days.
I was one of them.
It felt bonkers to be told someone is going to lop your boob off and your life is in the balance but that nothing can be done for almost four months. “There are too many patients; you just don’t have the theater space,” my surgeon told me.
And it wasn’t just at the Royal Marsden that this was happening. A mastectomy is classified as elective surgery, in that you can say: “No I don’t want to have this life-saving surgery.” I’ll take my crystals, do some chanting, and hope for the best.”
Ultimately, my husband and I decided we couldn’t wait, so I used my work health insurance scheme to cover most of the cost. My surgeon from the Marsden still performed the operation but at a private hospital, with theater space.
I know I’m very lucky. To be alive and to have health insurance to fall back on. There are hundreds of thousands of people across the country who were also on the cancer waiting list and unable to get surgery. When Macmillan Cancer Support gave evidence to MPs on the Public Accounts Committee they described the devastating impact that cancer backlogs had on patients’ mental health and what this meant for survival.
Before last March I didn’t really think much about cancer care or, indeed, dying. I was 44; I had a toddler at home, a busy job as economics correspondent at Channel 4, and an episode of Game of Thrones to squeeze in.
In the past 12 months, I’ve lost my hair, a breast, and the chance to have more children. The truth is, I still don’t quite know what will happen. My cancer bingo card has clocked up surgery, chemo, radiotherapy and hormone treatment. I’ve just started a brilliant new biological drug therapy that’s only just been approved by the NHS, thanks to a trial led by the Marsden. Researchers believe it is the first new treatment in 20 years for breast cancer patients like me, who have a much higher risk of the disease returning.
I’ve made peace with the fact that lots of things won’t ever be the same. My body doesn’t look or feel like it did. At least twice a day I feel short-changed that treatment has forced me into an early menopause; I’m either bloody hot or abjectly cold.
Luckily, some things have returned to normal. I’m going back to work soon, which is a huge part of my identity. My hair, eyebrows and eyelashes have all regrown which, while superficial, have helped my confidence. Best of all, I can cuddle my three-year-old son again. During the dark days of chemotherapy my little boy was too young to understand but old enough to feel rejected, and the sense of failure as a parent was inescapable.
But cancer is a game of odds and everything is better than being dead. That’s why delays in cancer care are so pernicious and why underinvestment in both the equipment and the workforce of essential oncologists and specialist nurses makes a profound difference.
After diagnosis, you are subject to a tyranny of follow-up scans. They’re petrifying but they’re life-saving. Figures released this week show that cancer waiting times are still staggeringly long and have failed to return to pre-pandemic levels. Under the NHS recovery plan, which was given funding in the aftermath of the pandemic, at least 85 percent of patients should start some sort of treatment within 62 days of having been urgently referred to the hospital. But at the end of last year, on average, only 61 percent of patients had started cancer care in time. It’s even worse for some tumor types, such as lung cancer, where only 54 percent of patients had started treatment.
Worryingly, the monthly figures for January, which have only just been published by the NHS, actually show things getting worse, not better. Overall, only 54 per cent of people began treatment within 62 days, with just 47 per cent of lung cancer patients receiving care in that timeframe, and barely 36 per cent of gastrointestinal cancer patients meeting that critical NHS standard of care.
The NHS tells me that Christmas is always hard and that in recent weeks things have started to improve. It says some of the delays are because of the sheer number of people coming forward after the lockdown. Getting everyone started in the system, the NHS says, is its top priority.
It will take time for the impact of these delays on health outcomes to become clear but, privately, doctors suggest these trends endanger lives.
When I go back to work next week, I will be looking at the Budget, but also health service funding and how we stack up internationally. The NHS is part of the fabric of what makes us British. But healthcare is getting more expensive, as drugs become more complex and people live longer.
In the UK, we are world leaders in many critical parts of medicine and incredible at protecting people from the catastrophic costs of illness. But as a portion of national income, we actually spend quite a lot less than most of our European neighbors. Consequently, we have fewer doctors – just three for every 1,000 people – which puts us behind Moldova as the sixth worst in the list of OECD countries. We have fewer scanners and MRI machines here, which means fewer diagnostic tests.
Those within the NHS say the system is not broken, it’s just overwhelmed. But with the Budget around the corner again it could be time for big and bold decisions.
The bleak road of cancer treatments can bring you closer to those you love. My mum, who watched her own mother die from breast cancer, has the Persian version of a stiff upper lip. There’s no complaining, just heroic levels of childcare and amazing Middle-Eastern cooking. Every woman needs to ensure she has a coven; the support of my incredible girlfriends was a lifeline.
Finally, after a diagnosis you need to plot islands of calm, silliness or joy. And in the rough waters between, I recommend listening to Maya Angelou on repeat: you may encounter many defeats, but you must not be defeated.
Not bad advice for the NHS too.
For cancer advice and support go to macmillan.org.uk
Helia Ebrahimi will return to Channel 4 News next week, weekdays at 7pm