A year on, lobular breast cancer is still being ignored — and women deserve better.
Nearly a year ago, I wrote on social media that lobular breast cancer must no longer be the “forgotten cancer”. I urged government to act, to fund research, and to give hope to the thousands of women affected by this disease.
A year on, I regret to say that little has changed.
In that time, an estimated 365,000 more people globally have been diagnosed with invasive lobular breast cancer, over 8000 of them in the UK.
This is a disease we have known about since the 1970s, yet still do not properly understand, still do not diagnose effectively, and still do not treat specifically. It is the second most common form of breast cancer, yet it remains under-researched and underfunded.
It behaves differently from the more common ductal form which usually presents as a distinct, palpable mass. Lobular breast cancer more often appears as subtle thickening or diffuse fullness rather than a discrete lump and can evade detection on standard imaging. As a result, too many women are diagnosed late, when treatment options are more limited and there is still no treatment specifically designed for this disease.
Over the past 12 months, however, something remarkable has happened in Parliament.
The project has secured the support of 463 Members of Parliament, from across the House and across the United Kingdom. This is the most significant display of cross-party consensus we have seen on a health issue in decades. The matter has been raised repeatedly in the House of Commons, debated thoughtfully, and supported widely.
And yet, despite this clear and consistent expression of parliamentary support, funding has not been forthcoming. There are pockets of research going on globally, but what is needed is a major research programme estimated to cost UK£20 million over 5 years.
It is right that government considers carefully how public funds are allocated. But it is equally important that, where there is a strong and sustained majority view across the House, that voice is heard and given due weight in decision-making.
This week, on 22 April, three silent vigils took place, including on Whitehall opposite Downing Street. Women stood in silence for 22 minutes, representing the 22 people diagnosed each day in the UK. These moments were not protests, but dignified acts of reflection and awareness.
They were also a reminder that behind every statistic is a person, a family, and a future that may be profoundly affected by a disease that still lacks the research attention it warrants.
At its heart, this is an issue of fairness.
Women with lobular breast cancer should not face worse outcomes simply because their disease has been historically overlooked. We now have the opportunity to address that imbalance. The research community is ready. The political support is there. The case has been made.
What is needed now is a decision and action. If we look ahead another year in the doldrums, another 365,000 people globally will have been diagnosed. That is a prospect we should not accept.
The government has an opportunity to respond to the clearly expressed will of a large majority of Parliamentarians and to take a meaningful step forward in improving outcomes for women affected by this disease.
See my remarks at the vigil outside Downing Street here: https://fb.watch/GL8_fPlOsU/.
