Lobular Breast Cancer: Moon Shot Project

Susan’s first campaign was in fact not lobular breast cancer; it was aviation safety. She flew commercial aircraft in the Australian outback, one of the few female pilots to take up this challenge, and piloted the first all-female crewed Qantas flight. This was before contaminated cabin air ended her flying career in 1997. She spent the following decades building the evidence base on aircraft cabin air contamination, with a PhD, an MSc, peer-reviewed research and a leading role in her home country’s Senate inquiry into cabin air quality. Her focus in her final years was on lobular breast cancer, and it is on this endeavour that I was pleased to support her as her local MP.

Susan was diagnosed with invasive lobular breast cancer in 2013. It was a one millimetre mark—no lump, no pain. Two mammograms and two ultrasounds told her that there was nothing to worry about. An MRI scan found 2.5 cm and surgery then confirmed 7 cm. That gap between what standard imaging can see and what is actually there is the heart of why lobular breast cancer needs its own research programme. It behaves differently. It is missed because it is different and it is currently treated exactly the same as the most common form of the disease, because the underlying biology has never been properly funded.

In May 2023, with her husband Tristan, Susan launched the Lobular Moon Shot Project in Horsham. She built it from nothing into a campaign that has cross-party support in this House, a partnership with the Manchester Breast Centre and a research plan costing £20 million over five years.

In June 2025, Susan travelled to Manchester to help launch the scientific programme that she had spent years fighting for. It was a programme that, of course, she knew she would never benefit from herself. Nine days later, Susan died. She never received a reply from No. 10 and never got a chance to make her case to the then Health Secretary. So today, I will again make the case to the Government on behalf of Susan, the 22 patients a day who are diagnosed with lobular breast cancer, and the 463 MPs who have publicly supported her campaign so far, which I believe is the highest number of MPs to publicly support any individual campaign.

Every day, 22 women in this country are told that they have lobular breast cancer—that is over 8,000 a year. This is not a rare disease; in fact, it is the sixth most prevalent cancer in women.

“The last overseas holiday Susan and I took together was to Easter Island, one of the most remote places on earth. Like so many people, I had always imagined the island’s famous stone statues—the moai—looking out across the Pacific Ocean. But when we arrived, we discovered something rather beautiful. Most of them face inland. We were told that they were positioned that way because they watch over their people rather than looking out to sea. Whether that is history, tradition or simply one interpretation, it touched us both deeply.

Before we left, Susan found a beautifully carved wooden replica of one of the moai. We brought it home together, and today it sits in our house. Every time I look at it, I think of Susan. It reminds me that although she is no longer physically with me, her love, her courage and everything she stood for remain with me every single day. In my heart, I like to think she is still watching over me, just as those remarkable statues have watched over their people for generations.

If Susan could stand in Westminster Hall today, she would not ask Members to remember her. She would instead ask you to remember the thousands of women diagnosed with invasive lobular breast cancer every year who still have no treatments designed specifically for their disease. That is why this debate matters. That is why the Lobular Moon Shot project matters. And that is why Susan’s legacy deserves not only our admiration, but our action.

As Susan’s husband, I know she would have been deeply humbled that Members from every corner of this House have come together today to honour her life. She never sought recognition for herself. She simply wanted to leave the world a little safer, a little fairer and a little kinder than she found it. My sincere hope is that history will remember this debate not simply as a tribute to one remarkable woman, but as the day Parliament chose to transform admiration into action for future generations of women diagnosed with invasive lobular breast cancer. That would have been the greatest tribute we could ever have paid to Dr Susan Michaelis.”

As the hon. Member for Horsham said, this was not Susan’s first experience of campaigning. She had success campaigning on aviation safety, in particular on jet fuel and pollution in cabins, a potential cause of her own cancer.

The Lobular Moon Shot Project has been successful so far in raising significant funds, which have been used to develop funding proposals for early work. As we have heard, there is an opportunity to fund significant research at Manchester University. I declare an interest as an alumnus of Manchester.

I was privileged to meet the campaigners and the former Health Secretary. That led to a commitment from the Government to issue a highlight notice, which demonstrates the importance that they place on this type of research. I respect the Government’s approach, which has been to say that while we all want to find a cure and there is a need to do the scientific research, it is important to do that through a peer-reviewed process and through competitive funding rounds, because that is what produces the best science. It is, however, vital that those funding rounds go ahead and that the funding is made available to meet the need.

As we have heard already, the unique aspect of lobular breast cancer is that it is very difficult to discover. It often goes undetected, and only 28% of cases are detected at stage one, compared with 38% of non-lobular breast cancers. There are 8,000 cases a year. The campaign is calling for the discovery science to be done. I appreciate that the Minister today is answering on behalf of the Department for Health and Social Care, but we also need engagement with the Department for Science, Innovation and Technology, because we need bespoke funding pools from UK Research and Innovation that universities such as Manchester can tap into, to make sure that this vital work gets done. I was privileged to meet Professor Rob Clarke from Manchester and hear about his work.

I urge the Minister to take up this issue. Two years on since I was elected, and three or four years on from when I first heard about this campaign, progress has been made, but it is too slow. So many people are in situations that I cannot even imagine, and they are giving their time to campaign for something so important, not even necessarily for themselves, but for the generations that come after them. I implore the Government to listen to their calls and to do what we can to make sure that the correct funding pools are available so that we can, once and for all, get this research done and answer their pleas.

The project estimates that 3.75 million people worldwide will be diagnosed with invasive lobular breast cancer over the next decade, making need for action so very urgent. The investment also represents good value. Modelling by the Lobular Moon Shot Project suggests that preventing or delaying metastasis in even a relatively small number of patients would more than offset the proposed £20 million investment through reduced treatment costs. I know that many across the cancer community are eagerly awaiting the Government’s workforce plan. Can the Minister update the House on when it might be published?

In closing, I urge the Government to support the Lobular Moon Shot Project and commit £20 million to improve research, diagnosis and treatment for invasive lobular breast cancer. I also once again pay tribute to Dr Susan Michaelis, without whose tireless campaigning, I doubt we would be here today debating this issue or pressing for the change that so many patients and families deserve.

Trish’s experience raises important questions. Lobular breast cancer is the second most common type of breast cancer, yet many women have never even heard of it. Unlike the breast cancers many of us are more familiar with, lobular breast cancer often does not form a distinct lump. Instead, it grows in strand-like tumours, making it much harder to detect on mammograms and feel during examination. That is why women with lobular breast cancer are so often diagnosed later, when tumours are much larger and treatment becomes far more extensive. For Trish, six mammograms over more than a decade failed to detect her cancer.

That is why the work of the Lobular Moon Shot Project matters. Campaigners are not asking for special treatment; they are asking for research into lobular breast cancer that reflects the scale of the challenge. They are asking for earlier diagnosis, better understanding of how the disease behaves, improved imaging and more effective treatments. Above all, they are asking that women with lobular breast cancer are no longer overlooked because their cancer behaves differently. Awareness of lobular breast cancer must improve. For many years, the message has quite rightly been, “Check for lumps,” but breast cancer is not always a lump; women also need to know about dimpling, puckering, changes in breast shape, thickening of the breast tissue and changes to the skin. As Trish said to me,

“You should know your breasts as well as you know your face.”

I welcome the engagement that Ministers have already had with campaigners and researchers, and I hope that today’s debate marks another step forward.