Monica Piccinini
20 December 2025
Wes Streeting, the secretary for health and social care, must find funding for research into invasive lobular breast cancer – to save lives and end an injustice towards women.
Imagine a cancer that grows quietly throughout the body, slipping past every test we’re told to trust – no obvious lump that women are taught to look for. A cancer that can be almost invisible on a mammogram or ultrasound and that often reveals itself once it has already advanced.
This is invasive lobular breast cancer (ILC), a disease so silent it often steals time before anyone realises it’s there.
Over the next decade, around 3.75 million people worldwide are expected to hear the words “you have invasive lobular breast cancer.”
Today, 22 people in the UK and over 1,000 globally are diagnosed with lobular breast cancer every single day. These aren’t just numbers, they are mothers, daughters, partners, friends, people who believe their mammograms would warn them if something was wrong.
ILC accounts to 15 percent of all breast cancer cases, and is the sixth most common cancer affecting women. Yet, it still sits in the shadows of medical research, guidelines, and public awareness.
The legacy of Susan Michaelis
One person who understood the urgency of the crisis better than anyone was Dr Susan Michaelis, founder of the Lobular Moon Shot Project, a UK based volunteer-led organisation run by women with lobular breast cancer and their families, trying to secure funding for research into lobular breast cancer.
A former Australian pilot, Susan became one of the most influential voices in the campaign for lobular breast cancer research. She channelled extraordinary determination into campaigning for research that could save lives like hers.
First diagnosed in 2013, Susan went to endure ten generic cancer treatments, none tailored for her disease. She died on 9 July 2025, after her cancer spread to her neck, spine, pelvis, ribs, head and eye area.
Before she passed, Susan left behind a message that feels even more pressing now:
Mr Streeting, you’re the health secretary, you’re responsible for the health of the people. When it comes to lobular breast cancer, you’re failing.
They knew about this type of breast cancer well before I was born, and they still today don’t understand the basic biology of how this unique type of breast cancer works. So, I, and many others, we haven’t been given specific treatments.
I’m going into my seventh type of treatment in 12 years, none of them specific for lobular, and it’s not going to save my life, and many others, I suspect, but you can change this. What we need is a moon shot type of approach to resolve this and Manchester Breast Centre can do this.
The majority of MPs said this work can be funded, so please Mr Streeting, you must fund this work, please!
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 nearly nine in ten (86%) 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. 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.
A patient’s reality: Alison’s story
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 4cm 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. What shocked her most was realising that despite how common lobular breast cancer is, there’s still no treatment made specifically for it.
Alison describes the impact of her diagnosis and treatment:
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.
Why so many cases are caught too late
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.
Costs
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; by 2050, this could rise to £24.5 billion. 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.
Time to act
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.
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.
Featured image: Breast cancer © Nyul / Dreamstime
Monica Piccinini 