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The final item of business today is a members’ business debate on motion S7M-00179, in the name of David Barratt, on the Lobular Moon Shot Project, raising awareness of lobular breast cancer and the lack of research. The debate will be concluded without any question being put.
Motion moved,
That the Parliament recognises the work of the Lobular Moon Shot Project in raising awareness of invasive lobular breast cancer; notes that this condition is the second most common type of breast cancer, accounting for around 15% of diagnoses, with an average of 22 women a day in the UK receiving a lobular diagnosis, yet it is often considered to have been historically under-researched and underfunded; understands that it presents and behaves differently from other forms of breast cancer, often not forming a distinct lump and therefore being more difficult to detect through routine screening; believes that there are currently no treatments specifically developed for the condition, despite its distinct biological characteristics; notes with concern that less than 1% of breast cancer research funding has historically been directed towards lobular research; recognises calls from the Lobular Moon Shot Project for dedicated investment in research into its basic biology, including proposals for £20 million of ring-fenced funding from the UK Government over five years; welcomes the involvement of researchers from Scottish institutions, alongside the Manchester Breast Centre and international partners; believes that improved understanding of lobular breast cancer could lead to earlier diagnosis, more targeted treatments and better long-term outcomes for women living with the condition in Cowdenbeath and across the country, while reducing pressures on the NHS, and notes calls urging the Scottish Government to support the aims of the Lobular Moon Shot Project and to press the UK Government to commit the funding required to ensure that women diagnosed with lobular breast cancer can benefit from equitable research, treatment and care.
18:15
I want to open this debate by telling Parliament about Sharon Prince, one of my constituents from Dalgety Bay, and her experience of invasive lobular breast cancer. Sharon describes it as “a sneaky cancer”. Having heard her story, I understand why.
In 2021, Sharon received the all-clear following a routine breast screening mammogram. Seven months later, she was diagnosed with breast cancer. She had no lump, no dimpling and none of the symptoms that we are told to look out for. Instead, she experienced a persistent itch and a strange tugging sensation. Initially, she was told that breast cancer was not painful and that it might just be a pulled muscle, but Sharon trusted her gut, and she pushed for further investigation. Even then, her mammogram was clear. It was an ultrasound and subsequent biopsy that finally identified the cancer.
Sharon is here in the gallery today as a survivor, but how different might her story have been had she not persisted in seeking answers? Her experience illustrates why awareness matters. Breast cancer does not always present as a lump, and a clear mammogram should not mean that persistent questions should be dismissed.
Sharon’s story also exposes a wider problem. Invasive lobular breast cancer is the second most common form of breast cancer, accounting for around 15 per cent of diagnoses. Around 22 women are diagnosed with it every day in the United Kingdom, yet, historically, only around 1 per cent of breast cancer research funding has gone towards lobular research. That represents a staggering gap between the scale of the disease and the attention that it has received.
So, what makes lobular different? Unlike many other breast cancers, its cells often grow in a diffuse pattern through breast tissue rather than forming a distinct lump. The loss of a specific protein that helps cells stick together is central to that distinctive behaviour. That biology helps explain why lobular cancer can be difficult to detect through conventional imaging, including mammograms. It can also behave differently after diagnosis, including spreading to different sites and recurring many years after initial treatment.
Those are not minor differences. They matter with regard to how we detect the disease, how we treat it and how we monitor patients over the longer term. Yet, despite those differences, patients can find themselves navigating treatment pathways that have developed around a much broader understanding of breast cancer without sufficient evidence to guide decisions specifically for lobular disease.
Sharon described discovering that as she went through her own treatment. She had to learn about the limitations of the evidence base, the difficulties in monitoring the disease and the questions that the research has yet to answer. Think what that means for somebody who is already dealing with a cancer diagnosis. Think about enduring the treatment and its side effects while knowing that the necessary scientific evidence to guide those decisions remains incomplete.
Sharon’s experience did not end with treatment. She beat the disease and was initially advised that she would receive annual mammograms for five years—mammograms: an approach that she knew was unsuited to the characteristics of this cancer. She questioned whether that follow-up arrangement adequately reflected her particular circumstances, and she once again had to advocate for herself to secure more appropriate screening.
Her experience raises important questions about whether follow-up arrangements sufficiently account for the distinctive characteristics of lobular cancer, including its potential for late recurrence. No patient should have to become their own research advocate simply to ensure that their concerns are heard.
That is why the Lobular Moon Shot Project matters. The proposal is for £20 million over five years to fund eight co-ordinated research work packages, bringing scientists together to investigate the basic biology of lobular cancer. The aim is to understand why this cancer develops and behaves differently, how it spreads, why it recurs years later, and where opportunities might exist to detect it earlier and to develop more effective treatments. It is not simply a request for more research in general; it is a co-ordinated programme that is designed to address the long-standing gap in scientific understanding.
Clinicians have backed that approach. A letter supporting the project, signed by Dr Caroline Michie, a consultant medical oncologist at the Edinburgh Cancer Centre, alongside eight clinical colleagues, highlights the differences in tumour biology, treatment responses and patterns of spread. It makes the case for a better understanding of the disease before more effective drugs can be developed. That professional support matters. The issue is not just the concern of campaigners and patients, as important as those concerns would be. Clinicians are telling us that there is an unmet need.
There is already substantial cross-party support, too. In September, party leaders signed a joint letter to the Prime Minister calling for the £20 million programme to be funded, subject to appropriate scientific proposals, independent peer review and governance.
The question now is how that support translates into action. I welcome the support that has already been expressed by the Scottish Government, and I recognise that funding for discovery science sits at UK level and that Scotland, in effect, is already paying into that fund. However, that makes it so much more important that the Scottish Government uses its influence to press the UK Government to commit to the funding that is required, and that Scottish researchers have a meaningful opportunity to contribute to the programme.
Sharon’s determination helped to secure her diagnosis. She is alive because of it. However, we cannot rely on every patient having the knowledge, confidence and strength to keep pushing when the system around them fails to provide reassurance. Nor should patients and clinicians have to keep asking the same unanswered questions because the research that is needed to answer them has not been adequately funded. We owe it to Sharon, to the thousands of women who have been diagnosed with lobular breast cancer, and to those who will be diagnosed in the years ahead to do better.
The scientific questions have been identified, the researchers are ready to undertake the work, the clinical need is clear, and the political support is there. Let us turn that support into action and call for the Lobular Moon Shot Project to receive the dedicated research funding that it needs.
We move to the open debate.
18:23
I thank David Barratt for securing time for the debate and I welcome Sharon Prince to the public gallery. I also apologise to members in the chamber, the minister and you, Presiding Officer, for having to leave early.
Across the UK, there are 8,400 cases of lobular breast cancer each year, which is approximately 15 per cent of all breast cancer cases. In Scotland, I understand, more than 100 people are diagnosed with breast cancer every week, so those with lobular breast cancer account for a significant proportion of that number. Despite the condition being the second most common type of breast cancer, it remains historically underresearched and underfunded.
As we have heard, lobular breast cancer presents differently from other forms of breast cancer. It does not manifest as a lump, so it is often much more difficult to detect on standard mammograms. It occurs in the glands that make milk when breastfeeding and spreads into the surrounding tissue.
In general, early diagnosis saves lives. Breast Cancer Now notes that five-year survival rates from stage 1 breast cancer are north of 99 per cent, so it is all about early detection and rapid, effective treatment. However, we have much to do to improve screening uptake and there is currently real inequality of access between women in the most deprived and the most affluent areas, which inevitably results in worse outcomes for the women who need most support.
I first met Sharon Prince from the Lobular Moon Shot Project in 2025 after she emailed me. She told me about the lack of research and the levels of funding, which were not at the pace or quantum required to produce change. I understand that, historically, less than 1 per cent of breast cancer research funding has been directed to lobular breast cancer but that it accounts for 15 per cent of all breast cancer diagnoses, which means that the current research spending falls well short of what is required. Breast Cancer Now has shown that, if research continues at its current pace, it will be 30 years before lobular is fully understood and has a specific treatment. We know that the number of people living with breast cancer in Scotland is projected to increase from 81,000 in 2025 to 118,000 in 2045 and that lobular breast cancer will also increase, so the need for effective treatment is urgent.
I understand that research funding is based on bids being received. The National Institute for Health and Care Research published a highlight notice in November 2025, inviting applications for research projects that could improve detection, diagnosis and treatment in this field. Decisions are being taken this month and I look forward to learning that progress has been made, but I am equally clear that the imbalance in research funding must end. The Lobular Moon Shot Project wants ring fencing of £20 million and Sharon has suggested that each of the four nations could make a contribution to ensure that the research happens. I think that such a collaborative approach would be welcomed by members across the chamber, because we know that advancing research to find the best treatment requires us to work together. Lobular breast cancer affects women in every community, whether they live in Scotland or the rest of the UK, so we should focus our efforts on addressing it effectively.
Sharon spoke at the cross-party group on cancer and secured a commitment from Neil Gray, who was the Cabinet Secretary for Health and Care then, for a meeting, but I believe that that meeting did not take place. I am sorry if I am wrong about that, and I appreciate that everyone is really busy, but I would be grateful if the current minister would agree to a meeting with Sharon and others from the project.
In closing, we should remind ourselves that behind every statistic is a person and their family navigating some of the most difficult moments of their lives. They deserve the reassurance that the right support will be there when they need it and that research is being undertaken to better understand their diagnosis.
18:27
I, too, congratulate David Barratt on securing this members’ business debate on the Lobular Moon Shot Project to raise awareness of invasive lobular breast cancer. As the motion states, and as others have said, ILC is the second most common type of breast cancer, accounting for around 15 per cent of diagnoses, yet there is no treatment specifically designed for its distinct biology.
David Barratt eloquently told the story of his constituent, Sharon Prince, and of her journey with ILC. I, too, welcome her to the gallery and I pay tribute to her, and others, who have worked hard and collaborated to ensure that lobular breast cancer is brought to people’s attention. There may be something that we can learn from that collaboration.
I am sure that many of us will highlight the symptoms of ILC in our contributions, but it does no harm to repeat those. ILC means that cancer cells in the lobules—which are the glands that make milk during breastfeeding—have spread into the surrounding breast tissue. Invasive lobular breast cancer does not always form a firm lump but is more likely to cause a thickened area of breast tissue. The possible symptoms include thickening or swelling; a change to the nipple, for example in becoming inverted; changes to the skin, such as dimpling or thickening; and persistent itching, as was the case for Sharon. Anyone who thinks that they have any of those symptoms should speak to their doctor, because early detection, as Jackie Baillie has said, is important.
Dr Susan Michaelis, a former Australian pilot, was first diagnosed with invasive lobular carcinoma in 2013. She passed away in July last year. In 2023, she set up the Lobular Moon Shot Project to get the research funding for ILC that is needed so that the biology of the disease can be much better understood. I had the privilege of meeting her husband and other people living with lobular breast cancer, including Sharon Prince, earlier this year. Dr Michaelis said:
“We must think of ILC as Invest in Lobular Cancer”.
Lobular breast cancer is too often considered to be too rare to attract mainstream research funding, but it is too common to qualify for rare cancer research funding. The Lobular Moon Shot Project decided to galvanise political support to ensure that vital research funding is made available.
Research is being done globally, but the project is pushing for the UK Government to invest an estimated £20 million in a co-ordinated research programme over five years, as David Barratt outlined. I was very pleased to see that, on 1 September, a joint letter signed by our First Minister was sent to the Prime Minister calling on him to ring fence funding for that research. There is cross-party and cross-nation support for the research, so I hope that that will provide the final impetus to get the funding that will enable it to take place. I hope that the Scottish Government will continue to press for that.
Separately, as Jackie Baillie mentioned, the National Institute for Health and Care Research is inviting applications for high-quality research, with an emphasis on studies that improve understanding of detection, diagnosis, treatment, follow-ups and ongoing care for people living with the condition. Those are exactly the areas in which there is unmet need, as Sharon’s story has highlighted. I would appreciate it if the minister could give us an update on that funding.
A moonshot is an ambitious project that seeks a radical solution to a massive problem—a phrase inspired by the Apollo space programme. Dr Susan Michaelis was a pilot. What a fitting tribute it would be to her and Sharon Prince’s work if this ambitious and life-saving project reached the moon.
18:32
I thank David Barratt for securing the debate and Sharon Prince for sharing her story to raise awareness of lobular breast cancer and the lack of research on this form of the disease.
Lobular breast cancer is less well known than the other types, but it affects a significant number of women. As we have learned, it can be harder to detect on standard mammograms, as it often presents differently, and treatment pathways are not always as clear. Many women are diagnosed later than they should be, and the limited research means that we still do not fully understand how best to screen for it, treat it or support those living with it. Raising awareness is essential so that women, general practitioners and screening services recognise the signs and act sooner.
The lack of dedicated research leaves gaps in evidence that affect care across Scotland. Women with lobular breast cancer deserve the same priority as is given to those with other forms of the disease—timely diagnosis, effective treatment and ongoing support. Greater awareness and more research would help to close the gaps that exist and improve outcomes.
At the same time, we must be honest about how national health service resources are used. Recent NHS England figures show that, in 2024-25, 1,115 breast removal operations were carried out on women who identify as male. That represents a 52 per cent increase on the 734 procedures that took place two years earlier, with the estimated annual cost being up to £6.5 million. We do not have equivalent published figures for the number of procedures in Scotland. However, the latest freedom of information data from NHS Scotland show that funding requests for specialist chest reconstruction have run at well over 100 a year in recent years, including 119 in 2024-25, with a large majority of those patients aged from 17 to 25. That amounts to several hundred referrals over the past five years.
These are elective procedures that are carried out on healthy tissue, and the women concerned should first be given thorough mental health assessments and support rather than irreversible surgery, because every pound spent on such procedures is a pound that is not available for research on lobular breast cancer, for improved screening or for the treatment and support of women who actually have the disease.
Will the member give way?
Certainly.
Are you serious? Is that really the focus that you want to lead on in this debate?
Yes, because every pound spent removing healthy tissue is a pound not spent on research, screening or treatment for women who actually have breast cancer. Priorities matter.
Women with breast cancer, including those with the lobular form, are entitled to expect that resources be directed first at those who are unwell and at the research that can improve their care. Therefore, I support efforts to raise awareness of lobular breast cancer and address the lack of research, and I urge the Scottish Government to ensure that both awareness and research receive proper attention and funding, while ensuring that NHS resources are focused on treating disease and advancing the evidence base instead of removing healthy breast tissue.
I call Willie Rennie.
Follow that.
18:36
Yeah—follow that.
Not everything is about trans. Sometimes we want to debate other things. I know that Amanda Lindsay has an obsession about those issues, and she is entitled to say what she wishes, but I think that it is rather insensitive to all the people who have been spending hours of their lives on this matter and have gone through—
Will the member take an intervention?
Not just now. I will take the member’s intervention, but I just want to say that these people have not gone through trauma for years on end and committed hours of their lives to this matter for us to disrespect them in the way that Amanda Lindsay has.
As I said to Mr Barratt, women with breast cancer need the resources and young women with gender distress should get proper mental health support, not irreversible surgery. This is about priorities and resources. That is why this is important. It has nothing to do with trans—it has everything to do with NHS resources.
I will give you an example, if you like, of just—
Interventions must be short.
All right. Thank you.
Okay—let us just move on.
I am a bit of a fan of Fiona Corps. She is an east neuk first responder who goes and saves people’s lives, and she is also responsible for organising the annual east neuk dook. She also happens to be a Liberal Democrat councillor, although members should not let that influence them.
Fiona puts her heart and soul into the community. Then, she had the terrible call that her daughter Jessica, who serves in the Royal Air Force, had been diagnosed with leukaemia, and she spent weeks of her life on a camp bed by Jessica’s bed in a Birmingham hospital. When she felt a change in her breast, she put it down to stress. Over the following year, though, the symptoms developed, and she decided to go and get things checked again, only to receive the devastating news that she had lobular breast cancer, and it had spread into her lymph nodes, with 19 out of 22 affected. The mammogram had missed it, and it could only be identified, as Jenni Minto made clear in her speech, through other forms of testing.
I wanted to speak in this debate just to reinforce the message that breast cancer is not all about lumps and that this is a different form of it. I want everyone to be thinking: if something changes, absolutely get it double checked. Do not conform to the normal view of breast cancer. If there is tenderness or a tugging, get it checked. If the nipple changes, get it checked. If there is skin dimpling, get it checked. If there is a thickening or hardening of the breast tissue, get it checked. It is not just about lumps—all those other symptoms are part of it, too. Even if you pass the mammogram, be insistent and make sure that the NHS checks it out.
Lobular breast cancer is the second most common type of breast cancer. Around 22 women are diagnosed with it every day, as we have heard from David Barratt, and I thank him for bringing the debate to the chamber.
In some ways, I feel a little uncomfortable dictating to the scientific profession how much money should be spent on something, because that should be based on the quality of research applications. However, because the situation is so peculiar and because we have heard a number of stories about people whose lobular breast cancer has been missed in routine screening, it is incumbent on us to put a spotlight on this type of breast cancer and ensure that those in positions of power who are making decisions about funding allocation give special consideration to it.
Yes, we should raise awareness, but we also need a focus on research. If we can achieve that, we will have been well served by this debate.
18:41
I thank David Barratt for bringing this important motion to Parliament and for providing us with the opportunity to recognise the impact that invasive lobular breast cancer has on those who are diagnosed with the condition and, of course, on those close to them. I acknowledge the valuable contributions that my colleagues have made today. That said, I am happy to associate myself with Willie Rennie’s comments on just how insensitive Amanda Lindsay’s contribution was.
I am pleased to acknowledge the motion’s recognition of the work of the Lobular Moon Shot Project in raising awareness of invasive lobular breast cancer and its recognition that an improved understanding of the cancer could lead to earlier diagnosis, more targeted treatment options and better long-term outcomes for women living with the condition.
The Lobular Moon Shot Project was launched in May 2023 by Dr Susan Michaelis. Dr Michaelis was diagnosed with invasive lobular breast cancer in 2013 and passed away on 9 July 2025. She had undergone multiple rounds of different generic breast cancer treatments, which were unable to prevent the disease from progressing. Susan’s husband, Tristan Loraine, has worked tirelessly to continue the work of the Lobular Moon Shot Project. In that endeavour, he is supported by a formidable group of volunteers. I am delighted to see them in the gallery today, many of whom have direct experience of living with the condition. I was pleased to meet Tristan and two of the Scottish volunteers, Sharon Prince and Alice Williams, in September to discuss the aims and ambitions of the moonshot project.
One in nine women in Scotland will develop breast cancer. Due to improved detection and treatment options, survival has significantly increased over the past 30 years. Survival from breast cancer in Scotland has improved significantly over recent decades, with the latest Public Health Scotland data showing that 86.7 per cent of women diagnosed with breast cancer in 2018 to 2022 are expected to survive for at least five years after diagnosis.
As other members have said, invasive lobular breast cancer is the second most frequently diagnosed form of breast cancer, and it is not an uncommon condition. It accounts for about 15 per cent of breast tumours, which means that there are about 8,000 to 9,000 diagnoses across the UK every year.
Compared with the more frequently diagnosed ductal breast cancer, lobular breast cancer displays a scattered, single-file growth pattern that, as other members have said, makes it difficult to detect on standard mammograms. It is also less likely to form a distinct lump, making self-diagnosis more difficult.
A key aim of the moonshot project is to support the very basic biological research that increases our understanding of why, at the molecular level, lobular breast cancer tends to present in this distinct way. That knowledge could, potentially, identify Achilles’ heels that will in turn lead to the development of new treatments and diagnostic approaches that are targeted specifically at lobular breast cancer.
As things stand, for the general breast cancer population, the landscape of targeted treatments is increasing, with several novel drugs being either in the later stages of development or approved for clinical use. However, there is a lack of data on the effectiveness of those treatments in lobular breast cancer patients.
For patients with metastatic breast cancer, response evaluation criteria in solid tumours—RECIST—are widely used to define treatment response and disease progression in clinical trials. However, because patients with metastatic lobular breast cancer frequently present with more diffuse infiltration and non-measurable lesions, they may not be eligible to participate in many clinical trials. There is therefore a clear need to increase the level of basic biological research in lobular breast cancer. A key aim of the Lobular Moon Shot Project is to request from the UK Government a dedicated ring-fenced funding commitment of £20 million over five years to support that.
Publicly funded basic biological research comes under the remit of the Medical Research Council and is therefore not a devolved area. The Scottish Government signalled its support for the aims of the Lobular Moon Shot Project, and the First Minister was one of the signatories, along with most of the other party leaders from across the four nations, of a joint letter to the Prime Minister in support of the Lobular Moon Shot Project’s funding request. I was pleased to be updated just last week that the Lobular Moon Shot Project has now secured a meeting with Mr Burnham, and I was very happy to send a letter to his office further confirming the Scottish Government’s support.
Although basic biological research funding operates at a UK level, applied clinical research funding is devolved. Flourishing research and innovation is one of the 11 ambitions in our 10-year strategy for cancer. We recognise that research and innovation are a core part of the NHS. They play a key role in improving earlier diagnosis rates, enabling people with cancer to access new treatments at an earlier stage, and influencing health planning and policy.
Our chief scientist office provides funding for applied health research across a wide range of conditions, including breast cancer. In parallel to the discussions with the UK Government on basic research in lobular breast cancer, the Scottish Government will be keen to further explore with the Lobular Moon Shot Project funding opportunities that are available through the chief scientist office for competitive research projects and fellowship funding schemes. To answer, I hope, Jenni Minto’s question, no applications have been received to date to the CSO’s project or fellowship schemes that have a focus on lobular breast cancer.
Invasive lobular breast cancer has, historically, been the subject of less research activity than would be expected, given its prevalence.
[Made a request to intervene.]
I am in my closing paragraph, but I am happy to give way.
I am conscious that I left members hanging about Fiona Corps and her daughter Jessica. Both are alive and well. Jessica ran the London marathon this year and Fiona was out canvassing this week, so she is back to almost full fitness. I want to make sure that members are aware that there is light at the end of the tunnel.
I thank Willie Rennie very much for that. It is great. I am not so sure about the canvassing, but it is really good to hear that she is doing very well.
A combination of basic biological and applied clinical research represents the best opportunity for unlocking the secrets of this disease and offering better diagnostic and treatment options for patients. That combination would be a very fitting legacy for Dr Susan Michaelis and a recognition of the tireless work of the Lobular Moon Shot Project volunteers in raising awareness of this form of breast cancer.
That concludes the debate, and I close this meeting.
Meeting closed at 18:49.
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