The breast cancer blind spot

Transform

Susan’s words have echoed in Parliament. Since the 2024 general election, 460 MPs have pledged support to the Lobular Moon Shot Project. 

A recent national survey conducted by Merlin Strategy found that eight in ten Britons support the government funding for a £20 million research initiative to combat lobular cancer, with 86 per cent of 2024 Labour voters in favour. 

The Lobular Moon Shot Project team sat down with the health secretary, Wes Streeting, and senior officials on 14 July to highlight the urgent need for research into the basic biology of lobular breast cancer. 

Among those at the table was Professor Lucy Chappell, the government’s chief scientific adviser and head of the NIHR. After hearing the team outline the gaps in current knowledge and the stakes for patients, Streeting’s team said they would investigate what support might be possible.

A proposed plan by researchers at the Manchester Breast Centre could transform the future of lobular breast cancer. 

Toll

They’re ready to run a coordinated set of studies to unlock the disease’s biology and develop treatments tailored to it. But such a programme requires time, approximately five years, and money, £20 million.

In June 2023, at 52, Alison Livingstone found something she couldn’t ignore – a lump she instinctively knew wasn’t right. Her mammogram showed nothing. It had also shown nothing the year before, and the year before that. 

Only after an MRI was finally carried out did the full picture emerge: a four centimeter tumour, cancer spread to 11 lymph nodes. What she believed would be a small operation and radiotherapy became a mastectomy, eight rounds of chemotherapy, weeks of radiotherapy, ovarian removal, and years of ongoing treatment ahead. She’s still waiting for reconstruction.

Her diagnosis arrived late not because she didn’t attend screenings, but because lobular breast cancer often evades the very tools meant to protect women.

The emotional and physical toll has been immense, and the financial toll on the NHS too. One of her essential medications, Abemaciclib, costs £3,000 a month alone. 

Ignored

What shocked her most was realising that despite how common lobular breast cancer is, there’s still no treatment made specifically for it.

Alison said: “Treatment ended, but the fatigue didn’t. It was so severe I had to reduce my working hours considerably. And every single day I live with the fear it might come back, because with lobular, that risk is higher.

“I work hard to stay upbeat for my family. I don’t want my three teenagers carrying the weight of this, even though I know they worry.

“What angers me is how long this cancer has been ignored. Fifty years of being overlooked. If proper research had been done earlier, my cancer might have been found sooner, and I might have had treatments designed for my disease, not borrowed from another.”

Her experience is not uncommon, as it reflects what countless women with lobular breast cancer face every day.

Screenings

The problem begins with detection, as lobular breast cancer does not behave like the more familiar ductal cancer. Instead of forming a mass, it spreads in thin lines weaving through breast tissue. Too many women walk away from routine scans feeling reassured, when in fact the cancer is already present. 

By the time symptoms can be felt, such as thickening, a change in shape, a sense that something is “off”, the disease has often grown far beyond its early stages. Many women receive their diagnosis too late, and with that delay comes a far greater risk of long-term complications. 

Up to 30 per cent of those with early-stage lobular breast cancer may face later metastasis, sometimes years after their initial treatment. 

And yet, despite everything we know about its behaviour, there’s still no treatment designed specifically for lobular breast cancer. Women are instead offered therapies originally developed for other forms of the disease.

For many women, it feels like an injustice. They did what was asked of them; they attended their screenings, trusted the system, and followed medical advice. What they never received was the early detection or tailored care they deserved. Their children too deserved better. 

Families lose precious time not because the science is impossible, but because it hasn’t yet been properly funded or prioritised. 

Dangerous

Against the huge cost of breast cancer to society, £20 million funding for research seems almost modest. In 2025, breast cancer cost the UK economy £3.2 billion. This could rise to £24.5 billion by 2050. 

Meanwhile, a report by the NHS Confederation showed that just £1 of additional investment per woman could produce £319 million in economic benefit. 

Neglecting women’s health doesn’t save money, it costs more in every way imaginable.

Even MRI scans, known to detect lobular breast cancer more effectively than mammograms, are still not recommended by the National Institute for Health and Care Excellence (NICE) for routine screening. The gap between what we know and what we do continues to harm women every single day.

Lobular breast cancer isn’t rare, it isn’t new, and it’s not going away. And what it makes it so dangerous is how little attention it has received. 

Research

Behind every statistic sits someone trying to make sense of a diagnosis that might have been caught earlier, treated more effectively, or even prevented. Each delay and missed opportunity is a reminder of how unevenly our systems still value women’s health.

Every woman deserves a fair chance at early detection, every patient deserves a treatment designed for their disease, and every family deserves hope.

Research into lobular breast cancer is not an option, it’s essential. This cancer has been hiding in plain sight and it’s time we finally choose to see it. 

Health secretary, Wes Streeting, was contacted twice but didn’t respond to a request for comment.

This Author

Monica Piccinini is a regular contributor to The Ecologist and a freelance writer focused on environmental, health and human rights issues.