Secondary Breast Cancer

Clive Betts Excerpts

Thursday 11th June 2026 Westminster Hall

[Clive Jones]

I thank the hon. Member for putting his support on the record. This debate is very important: it gives us the opportunity to highlight the experiences of people living with secondary breast cancer and the action needed to support them.

One of the biggest challenges is the lack of reliable data. It is estimated that about 61,000 people in the UK are living with secondary breast cancer, but we do not know that for certain. The disease remains under-recognised, poorly tracked and inadequately recorded. People living with secondary breast cancer are still not consistently counted. Too often, they are invisible within the health system, making it harder to provide the tailored treatment, services and support that they need.

Some 20 years ago, data collection on metastatic breast cancer was identified as a priority by Breast Cancer Now’s secondary breast cancer taskforce. Progress was made in 2013 when mandatory data collection was introduced, and subsequent strategies have promised further improvements, but we are still flying blind. The first two national audits of metastatic breast cancer were unable to provide a complete picture, because recurrence data remains insufficient, both in quality and in completeness. The audit has demonstrated just how important it is that the issue be addressed: without accurate data, the NHS cannot properly plan services, allocate resources or understand the scale of need. Better data could also help to address continuing gaps in access to clinical nurse specialists for people with metastatic breast cancer.

Most importantly, people living with the disease are left feeling that they do not count, because the system cannot guarantee the support that they need. The reality is simple: if we do not know how many people have the disease, we cannot hope to support them effectively. This challenge is not unique to the UK; it is a global issue, and international collaboration can help us to learn from best practice elsewhere, but we should be leading the way. That is why the Government’s national cancer plan is so important. The plan commits to defining and counting recurrent cancers, starting with metastatic breast cancer in 2026. That commitment must now be delivered in full, and Parliament must hold the Government to account on achieving it. The ongoing work of the national disease registration service with NHS trusts to improve data collection is encouraging, but progress will require national leadership and accountability.

I am delighted that the hon. Member for West Lancashire is here today. Ashley Dalton was the Minister who drove the national cancer plan through Parliament.

[Mr Clive Betts (in the Chair)]

Order. Members must not refer to each other by name in the Chamber.

[Clive Jones]

I did mention the hon. Member’s constituency first, but I take your guidance, Mr Betts—my apologies for that.

I recently joined a meeting with the hon. Member and with charities including Breast Cancer Now, Breast Cancer Network Australia and Rethink Breast Cancer. Together those charities are working across the UK, Australia and Canada to improve metastatic breast cancer data and ensure that patients’ voices are heard. The message is clear: if we do not count people, we cannot support them. Collecting and publishing this data is essential, because people with metastatic breast cancer count.

Alongside better data, timely access to new treatments is critical. Secondary breast cancer may be incurable, but advances in medicine have transformed outcomes or many patients, giving them more time with the people they love. However, too many patients still struggle to access life-extending treatments on the NHS. One example is Enhertu, a treatment for people with HER2-low metastatic breast cancer. It has the potential to extend and improve lives, yet it was rejected for routine NHS use in England in 2024 on cost grounds. As a result, many patients have been unable to access the treatment that they need. Meanwhile, Enhertu is already available in 26 European countries, including Scotland. England is falling behind. Recent changes to the National Institute for Health and Care Excellence’s cost-effectiveness threshold provide an important opportunity to revisit that decision. I urge Daiichi Sankyo, AstraZeneca, NICE and NHS England to work together to reach an agreement so that patients can access and benefit from Enhertu.

More broadly, concerns remain about how NICE assesses medicines and about the impact on innovation and access to treatments, particularly following the introduction of the severity modifier in 2022. Even after recent changes, the threshold for approving some medicines for metastatic cancer remains lower than before 2022. NICE has estimated that the revisions may result in only three to five additional medicines being approved each year. It is the patients who pay the price. Life-extending treatments exist, but they are not always available to those who need them most. That cannot be right.

The commitments in the national cancer plan to streamline medicine approvals and accelerate clinical trials are welcome. The recent UK-US pharmaceutical agreements, including commitments to strengthen support for the life sciences sector, are likewise welcome, but without meaningful investment in innovative medicines for severe conditions, access will remain limited and patients will continue to miss opportunities for longer and better lives. Support services also remain inadequate.

Clinical nurse specialists play a vital role in guiding patients through complex treatment pathways and providing emotional support, yet many people with secondary breast cancer still do not have access to a clinical nurse specialist. Even among those who do, a quarter have not seen their specialist since diagnosis, and only 65% feel that their specialist has enough time for them. The reason is simple: caseloads are too high. We must recognise the profound emotional impact of secondary breast cancer. More than a quarter of patients say that they did not receive enough mental health support. Many need greater support for their family as well. The NHS long-term plan promised every cancer patient access to a clinical nurse specialist or support worker. That commitment must now be delivered for people with secondary breast cancer who need specialist expertise to navigate this complex disease.

People living with metastatic breast cancer do not have time to wait. They need to be counted. They need access to the support they deserve. They need rapid access to treatments that can give them more precious time with the people they love. I ask the Minister for two clear commitments. First, will she set out a timeline for delivering the national cancer plan’s commitment to define and count recurrent cancers, starting with metastatic breast cancer in 2026, and will she outline any plans to make the data that is currently held by the national disease registration service publicly available? Secondly, what are the Government doing to support metastatic breast cancer patients who may miss out on life-extending medicines because of pricing and access barriers?

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[Several hon. Members rose—]

[Mr Clive Betts (in the Chair)]

Order. I will call Mary Kelly Foy next, as the co-sponsor of the debate. After her speech, I will give hon. Members an indication of how long they may have to speak, to try to get us to the end of the debate in a reasonable fashion.

[Mary Kelly Foy (City of Durham) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Betts. I am grateful to have had the opportunity to work with the hon. Member for Wokingham (Clive Jones) to secure this important debate. I thank the campaigners who work to ensure that people living with secondary breast cancer are seen, heard and supported. I am thrilled that my hon. Friend the Member for West Lancashire (Ashley Dalton), who has spoken so openly about her diagnosis, is here today: I am sure that her remarks will be invaluable.

I speak not only as a Member of Parliament, but as someone who has been through breast cancer. I was fortunate: my cancer was picked up through screening and caught early. I received timely treatment and am now cancer-free, but I am forever grateful to the teams at the QE hospital in Gateshead, the Maggie’s centre and Future Dreams for their support. Whenever I can, I encourage people to attend screening appointments and to check themselves. In fact, on 14 July I will be hosting an event alongside leading breast cancer advocates and sporting ambassadors, focusing on raising awareness of the importance of women prioritising their breast health. I would love the Minister to join us.

I know that my personal experience was not that of someone living with secondary breast cancer. For people whose cancer has spread and can be treated but not cured, time is everything. In 2026, it is unacceptable that we do not know with confidence how many people are living with secondary breast cancer. We know that around 60,000 people in the UK are living with it, but that remains just an estimate. More than a decade after data collection was made mandatory, it is still not being consistently or accurately recorded across the country, and if people are not properly counted, their needs are too easily overlooked. The NHS cannot plan the right number of specialist nurses, oncology appointments, palliative care services, mental health support services or clinical trials if the true scale of need is not known.

I welcome the work of the national disease registration service, with NHS trusts, to improve data returns on metastatic breast cancer, but I am concerned that no data has yet been published. I also welcome the Government’s commitment to the national cancer plan, to define and count recurrent cancers, starting with metastatic breast cancer, and to ensure that patients have named primary contacts, but patients need delivery now, not just commitment. The NHS must routinely capture data on not only diagnosis but treatment and support needs. That is how we can move from counting people in theory to improving the services available to them in practice.

In Durham, trust was shattered when failures were identified in breast services at County Durham and Darlington NHS foundation trust. The concerns went way beyond isolated mistakes, and patients wondered whether the care that they received was truly in line with the standards that they should expect. Patients place their lives in the hands of the system, so they deserve to know that decisions about their care are evidence- based, properly scrutinised and made through strong, multidisciplinary teams. When that trust is broken, it is difficult to rebuild. I pay tribute to those who spoke out, such as my constituent Jackie, who did so on behalf of her sorely missed daughter, Michaela, and Amelia, Cat and Nadeen, who formed the Pink Justice Network. I do also recognise the efforts of the new senior leadership team at the trust, who are working to reform services and repair patient confidence.

On access to treatments, everyone living with secondary breast cancer deserves to have access to new, effective life-extending treatments, but there are serious concerns that the way in which NICE currently assesses some drugs limits access for people living with incurable metastatic breast cancer. Campaigners have warned that since the introduction of the severity modifier, some advance cancer treatments have been disadvantaged compared with the previous system. Breast Cancer Now reports that only a minority of end-of-life treatments assessed under the new approach received the same level of priority as they would have before.

The clearest example is Enhertu, which could give people with HER2-low metastatic breast cancer more time, yet was not recommended for routine NHS use in England in 2024, as a cost-effective pricing agreement could not be reached. Since then, eligible patients have missed out, and people have asked why a life-extending treatment should be available in Scotland but not in England. The Government’s decision to increase the NICE cost-effectiveness threshold for new medicines is welcome, and I hope it will create an opportunity to reach an agreement on Enhertu. I also welcome the fact that discussions between AstraZeneca, Daiichi Sankyo, NHS England and NICE are understood to have begun. More than 50,000 people have signed a petition calling for urgent agreement on Enhertu. They are asking for something very simple: that all parties come together to find a way to give eligible patients more time.

I must also mention the work of our hospices, such as St Cuthbert’s hospice in Durham, which are supported by charities such as Marie Curie, in providing people who are living with secondary breast cancer with the services that they need. Marie Curie reports that one in three people do not receive the care and support they need at the end of life, so I welcome the fact that the Government are developing a palliative care and end-of-life care modern service framework. I hope that the framework will address the lack of support available outside of normal working hours, embed palliative care in neighbourhood health and ensure that the palliative care workforce is fit for the future.

Will the Minister set out how the Government will ensure three things: first, that secondary breast cancer data is collected and published consistently across every trust, with clear accountability for delivery; secondly, that every patient has meaningful access to a specialist named contact with the time and capacity to support them properly; and thirdly, that people living with secondary breast cancer are not left behind when life-extending treatments become available?

Secondary breast cancer is not just a diagnosis. Mothers miss milestones, daughters face uncertain futures, partners become carers and families must live with a clock that they never asked to hear ticking. We do not ask for kind words today, but for action on research, access to treatment, support and giving people more time not just to survive, but to live—because behind every diagnosis is a person who still has dreams, plans and a life worth fighting for.

[Mr Clive Betts (in the Chair)]

Order. We have four Members who want to come in, so I will issue a guideline of nine minutes each for speeches, if Members could stick to that, please.

[John Milne (Horsham) (LD)]

It is a pleasure to serve under your chairmanship, Mr Betts. I want to focus on something that sits at the heart of improving outcomes for people living with secondary breast cancer: data, research and recognition. That especially applies to people suffering from lobular breast cancer.

Last year, my office asked the Government whether the new national audit of metastatic breast cancer would provide a breakdown by breast cancer subtype and hormone receptor status. The response from the Department of Health and Social Care was striking. The Government have effectively admitted that the data is simply not there in any complete or meaningful form. There is still no clear national picture of how many people are living with different forms of secondary breast cancer, what treatments they receive or the outcomes they face. That matters because, if we cannot accurately count metastatic breast cancer patients, we cannot properly plan services, understand needs, target research funding or develop treatments. We cannot fix what we do not measure.

That is especially true for lobular breast cancer. Invasive lobular carcinoma is the second most common form of breast cancer. Twenty-two people are diagnosed with it every day in the UK, yet it remains chronically under-researched and poorly understood. Unlike ductal breast cancer, lobular cancer often does not form a distinct lump. It grows in thin, single-file patterns, making it much harder to detect on standard mammograms and often leading to delayed diagnosis.

Secondary lobular breast cancer also presents further challenges because it tends to be found in untypical places, such as the liver, lungs, brain, bladder and even the eyes, whereas other types of breast cancer spread mostly to the bones. Despite those key biological differences, there is still no specific treatment pathway designed for lobular breast cancer patients. That is extraordinary, considering how many women are affected.

For too long, secondary and metastatic lobular breast cancer has existed in a blind spot. Historically, cancer registries have focused on primary diagnoses and have often failed to track recurrence or progression properly. Mandatory reporting has improved matters somewhat over the last decade, but huge gaps remain. That is why the work of campaigners and researchers has been so important.

I especially want to recognise and pay tribute to Dr Susan Michaelis, founder of the Lobular Moon Shot Project. She was one of my Horsham constituents, and she sadly died of lobular breast cancer almost a year ago. Susan was relentless in pushing this issue into public view. She understood that, without data, dedicated research and recognition that lobular breast cancer is different, progress would remain unacceptably slow. Her work has already helped encourage NHS England to release the first dedicated statistics on lobular breast cancer, but much more needs to happen.

This is about more than statistics. It is about people living for years with secondary breast cancer while feeling invisible within the system. Better subtype data would help us understand metastatic disease properly. Better research would improve diagnosis and, ultimately, dedicated treatment pathways for lobular breast cancer could help us move closer to what patients want to hear most of all: that their cancer is not just treatable, but curable.

The Lobular Moon Shot Project is looking for just £20 million over five years to fund research into the basic biology of lobular breast cancer. Researchers at the Manchester Breast Centre are ready and willing to take on the mission—they could start tomorrow. The Lobular Moon Shot Project is supported by more than 460 sitting MPs, more than can be found on any other single issue. All it needs now is for the Government to press the button. While we wait for that, women face poorer outcomes and require medications that were actually designed for other types of cancer, which cost upwards of £3,000 per month. Now is the time for the Government to commit to front-loaded funding to save lives, save money for the NHS and, most of all, demonstrate to those women that they matter. I ask the Minister for her support in finding the modest investment required to find answers for this very common but, sadly, much-neglected disease.

[Mr Clive Betts (in the Chair)]

I am supposed to be neutral in the Chair, but I think I am allowed to give a particularly warm welcome to Ashley Dalton.

[Hon. Members]

Hear, hear!

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[Mr Clive Betts (in the Chair)]

Before I call Wendy Chamberlain, let me say that the hon. Member for Strangford (Jim Shannon) has indicated to me that he has to leave at about quarter past 4. He has a plane to catch; I accept that as a reason, and he has given advance notice, which I thank him for. We will begin the wind-ups by 4.05 pm at the latest.

[Wendy Chamberlain (North East Fife) (LD)]

It is a pleasure to serve under your chairmanship, Mr Betts. Some people, both in this place and outside of it, say that politicians are out of touch, that they do not care and that they do not bring their lived experience to the Chamber. I want to thank the hon. Member for West Lancashire (Ashley Dalton) for everything that she did in her role as Health Minister and for her powerful speech. It should be essential watching for those who say otherwise about politicians’ intentions in this place.

I congratulate the hon. Member for City of Durham (Mary Kelly Foy) and my hon. Friend the Member for Wokingham (Clive Jones) on securing this debate, and I thank them for telling their own cancer experiences. Like most Members, I have been impacted by breast cancer in that my mother is a survivor. She was diagnosed when I was away from home for the first time at university. It was difficult for the family to receive that diagnosis and difficult for me, knowing that my mum was going through treatment while I was far away from home. I am pleased to say that she is still with us.

My colleague and friend in the Liberal Democrats in North East Fife, Councillor Fiona Corps, is currently stable after undergoing treatment for lobular breast cancer. She messaged me today to say she started her new meds yesterday. It is only two years since her daughter’s leukaemia fight. Fiona and her family have been through a lot. Her diagnosis brought me to speak to the lobular breast cancer campaign and I, like others, want to focus my remarks on that cancer in particular. Part of that is because, in relation to secondary breast cancer, the unmet clinical need of lobular breast cancer means the chances of it spreading are incredibly high. Indeed, for many who are diagnosed it has already spread by the time of their diagnosis.

It is important to note that this year marks 50 years since doctors first knew that lobular breast cancer was a distinct condition. I had not been born—just—we did not yet have Sony Walkmans, personal computers or mobile phones, “Don’t Go Breaking My Heart” was No. 1 for six weeks, and “Rocky” won best picture. I know it has been a long time since Scotland were in the World Cup, but this really was a long time ago. Here we are 50 years later in a world with advances that were unimaginable back then, but we have made painfully little progress on the diagnosis and treatment of lobular breast cancer.

As others have referenced, it is not like we think breast cancer is. As a woman, I have been taught to check for lumps—my mother’s experience made that more acute—but lobular cells grow in single lines that spread out over tissue. If a somebody did a lump check today, the chances are they would not spot it. Even more worryingly, if somebody goes for a mammogram, it will probably not show up there either. As others have referenced, 22 people are diagnosed with lobular breast cancer every day, but the reality is that we do not know how many people might be living with the disease and getting progressively more ill without treatment.

As of today, we still understand very little about it and there are no dedicated treatments for it. I am conscious that health is a devolved issue. I am standing here as a Scottish MP, but given the Minister’s responsibilities, I will note that the Government’s recent cancer action plan for England did not mention lobular breast cancer. We can say that other treatments are available, and Fiona and others are taking other treatments, but they are hit and miss. I have engaged with the Lobular Moon Shot Project and with Tristan—a constituent of my hon. Friend the Member for Horsham (John Milne)—and the story of his wife, Susan. She had eight different generic breast cancer treatments, none of which worked. Frankly, that lack of treatment kills people.

That is why lobular breast cancer is so relevant to the debate on secondary breast cancer. Not enough people know what to look for because it does not show up on tests, it is diagnosed late, and when it is diagnosed, there is not a dedicated treatment pathway for it. It is a recipe for a cancer spreading and we heard very powerfully from the hon. Member for West Lancashire what a diagnosis of secondary breast cancer means.

Unsurprisingly, there is still a lot that we do not know about what happens when the cancer spreads. We know it can spread to areas where other cancers do not like to, such as the outside membrane of the spine. We also know that the cells can lie dormant for years before starting to spread again. What we do not know is why any of that happens, how it can be identified, or how it can be stopped.

There could be hope. As others have referenced, researchers across this country are ready to take on this challenge. Importantly, there is cross-party support for getting this done; it is probably one of the most bipartisan campaigns in the history of this place. The Liberal Democrats are behind it; our leader, my right hon. Friend the Member for Kingston and Surbiton (Ed Davey), asked the Prime Minister about funding last summer. Indeed, I recently asked the then Secretary of State for Health and Social Care, the right hon. Member for Ilford North (Wes Streeting), about the project. He suggested that the money was there to fund the project, but work was needed on the programme of research. I say to the Minister: that is not how those involved with the project see it. This is a campaign that almost every Opposition MP supports, as well as huge numbers of those in the governing Labour party. Outwith this place, 84% of Labour voters surveyed in 2024 wanted lobular breast cancer research to be funded.

As others have said, £20 million over a five-year settlement equates to £238 per person for every person diagnosed over the next 10 years. Although I do not believe that life-changing research should be about a cost-benefit analysis, £238 is nothing compared with the costs of patients being out of the labour market and being treated over several years with the wrong thing—successfully or not.

I know that the Lobular Moon Shot Project is calling on devolved Governments to step up as well and provide £1 million per year for research to be carried out in their countries; the hon. Member for Strangford (Jim Shannon) referred to that, too. I call on the new Scottish Government and the new Cabinet Secretary for Health and Care to take this ask incredibly seriously.

I am sure that the Minister will refer to the current National Institute for Health and Care Research funding round. I do not want to pre-empt that—it is, of course, important— but it is not the same funding as is needed for the Lobular Moon Shot Project, which is research into the underlying biology of lobular breast cancer. Such research will remain weak until we know what it is we are trying to treat. We need funding for research into the underlying biology, so that lobular breast cancer can be identified, diagnosed and treated. That will improve outcomes drastically, including reducing the number of people with secondary breast cancer, which is the topic of this debate.

I will conclude by saying that my hon. Friend the Member for Wokingham has demonstrated very visibly that breast cancer is not simply a female issue, so I will end today by reflecting on the fact that anyone can get cancer. Many of those who do get cancer will make a full recovery. For some, cancer is something they will live with for the remainder of their life, but it will not be the condition from which they die. However, we have heard today that secondary breast cancer is decisive in terms of people’s life expectancy. We must let those women and men know that they are not alone.

[Mr Clive Betts (in the Chair)]

We now move on to the Front Benchers.

[Helen Maguire (Epsom and Ewell) (LD)]

It is a pleasure to serve under your chairmanship, Mr Betts.

I thank both my hon. Friend the Member for Wokingham (Clive Jones) and the hon. Member for City of Durham (Mary Kelly Foy) for securing this important debate, and for sharing their experience with cancer. I also thank the hon. Member for West Lancashire (Ashley Dalton) for her frankness and openness in describing her own experience.

Secondary breast cancer is now the leading cause of death in the UK for women between 40 and 49. Each month, around 1,000 people lose their lives to secondary breast cancer. That is one person every 45 minutes, so two lives will be lost to this disease in the short span of this debate.

Secondary breast cancer is incurable; treatment can slow down the disease, but it cannot cure it. Nevertheless, 13 years after data collection on secondary breast cancer became mandatory for all NHS trusts, the true number of people living with this disease remains unknown. It is estimated that the number is around 61,000. However, the lack of accurate data makes thousands of people who are in need of care invisible to the healthcare system. That is simply unacceptable. Those people count and we must count them. Collecting and publishing this data is essential. Without it, how can the NHS accurately assess the scale of need and appropriately plan services to ensure that support is available where required?

The Government’s commitment within the national cancer plan to define and count all secondary cancers, beginning with breast cancer, and the target to meet all cancer wait-time standards by 2029, are steps in the right direction. But to achieve those ambitions in full, we must be bolder and do so much more.

The Liberal Democrats are clear: quality and speed of treatment are vital to increase the survival rates for secondary breast cancer. The results of the research conducted by Breast Cancer Now in 2019 are damning. They make the lack of quality and the poor speed of treatment and care undeniable. They showed that 23% of respondents had to see their GP three or more times before they were diagnosed, and 53% of respondents said that they had not been given enough information about clinical trials by healthcare professionals. Just 30% of respondents said that they saw a cancer nurse specialist regularly and only 13% of respondents who had previously had breast cancer felt that they had been given enough information to recognise the signs and symptoms of secondary breast cancer.

Those figures show a healthcare system that is creaking under the strain after years of neglect by the previous Conservative Government. They highlight that professionals lack the time and capacity to effectively diagnose, offer follow-up care and share sufficient information, for which patients ultimately pay the price.

Every patient must get the care and support they need, when and where they need it. We must support the specialist cancer workforce, as well as GPs, to deliver the standard of care they would like and we expect. I therefore urge the Minister to take forward the Liberal Democrats’ proposals to introduce a guarantee that 100% of patients will be able to start treatment within 62 days from urgent referral; to recruit more cancer nurses so that every patient has a dedicated specialist supporting them throughout their treatment; and to expand the Medicines and Healthcare products Regulatory Agency’s capacity to halve the time for new treatments to reach the patients who desperately need them.

I think of the two people who will have lost their lives to secondary breast cancer in the 90 minutes of this debate. For them, and all the secondary breast cancer patients past, present and future, I implore the Minister to consider many of the calls raised by me and my colleagues here today.

[Mr Clive Betts (in the Chair)]

We move on to the shadow Minister, Dr Caroline Johnson, who has 10 minutes to make her contribution.

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[Mr Clive Betts (in the Chair)]

If the Minister allowed a couple of minutes before 4.30 pm for the mover to make some further comments, that would be really helpful.