Lobular Breast Cancer

[Valerie Vaz in the Chair]

I beg to move,

That this House has considered the treatment of lobular breast cancer.

It is a pleasure to see you in the Chair, Ms Vaz. I secured this debate in memory of my constituent, who was also my close friend, Heather Cripps. I welcome Heather’s husband David and her sister Jenny to the Public Gallery. I will come to Heather’s story shortly, but I also want to welcome to the Public Gallery my mother-in-law Cressida, who survived lobular breast cancer 22 years ago, as well as several others whose lives have been touched by lobular breast cancer. Many of them have provided me with briefings in preparation for the debate, for which I am grateful.

I met Heather in 2016 when, as someone who had pretty much never run for a bus before, I was roped into a free 5 km parkrun at 9 am on Saturday mornings in Dulwich park. Heather was a serious runner, and running was a huge part of her life. She took pity on me and decided that her inexperienced local MP needed a friend to run with, and she became that friend. We worked out that we lived close to each other, and it was not long before I was picking her up to go to the parkrun, and we would run together most weeks.

Heather was a dedicated public servant, spending her whole life working in the Home Office. It is a testament to her professionalism that she never spoke with me about the content of her work. What she did speak about as we ran was her family, her husband David and two precious daughters. Heather was an amazing mum. She spent so much of her time thinking about what her girls would enjoy, planning birthday parties and holidays and, earlier this year, plotting a trip to Wales to culminate in the surprise collection of a new puppy.

In 2020, at the height of the covid-19 pandemic, Heather started to get terrible back pain. For several months this was treated as a musculoskeletal issue. She was given pain medication, but it got worse and worse. Eventually, she was diagnosed with stage 4 invasive lobular breast cancer. The back pain was the result of the cancer having spread to her spine. For three years, chemotherapy held the cancer at bay but, when Heather came to Parliament almost exactly a year ago to campaign on lobular breast cancer, she mentioned to me that she once again had back pain, which she thought could be the cancer recurring.

The hon. Lady brings forward a very personal story. In this House, we know that personal stories are always the hardest to tell, but the ones that have more impact. I commend the hon. Lady for what she is doing today. We would all say that, but we mean it.

I thank the hon. Gentleman—who is my hon. Friend—very much indeed for that intervention.

Heather died in St Christopher’s hospice near her home on 30 August. She was 48 years old. Shortly before she died, Heather’s daughter, who was due to start secondary school in September, visited her mummy in the hospice, so that she could see her in her school uniform. In that unbearable heartbreaking detail is why we must do better on lobular breast cancer: better on awareness of symptoms and better at research into treatments.

The heartbreak of Heather’s story and the impact on her family and friends is sadly replicated for too many women and their loved ones throughout the UK. Lobular breast cancer is the second most common type of breast cancer, accounting for 15% of all breast cancers, and 22 women a day are diagnosed with lobular breast cancer in the UK. It behaves differently from other forms of the disease, mostly strikingly because it does not cause lumps, and it is often completely invisible on a mammogram.

I thank my hon. Friend for securing this debate on such an important topic, and for so movingly sharing the story of her friend Heather. I want to raise the case of my constituent from Dalgety Bay. Just days before her surgery for lobular breast cancer, a mammogram was still unable to pick it up, exactly as my hon. Friend describes. It could not pick up the existence of her cancer at all. Does my hon. Friend agree that this is a perfect example of why we so badly need more research and better diagnosis and treatment of lobular breast cancer for women across the UK?

I thank my hon. Friend for bringing the story of her constituent to this debate. This is exactly the reason why we need to find better means of diagnosis and treatment for lobular breast cancer. I will come talk about some of those means shortly.

Currently, there are no treatments specific to lobular breast cancer. This must change. The issues have been well documented by Dr Susan Michaelis, founder of the Lobular Moon Shot Project. Susan was 50 when she noticed a small, pale, 1 mm mark on her left breast in 2012. She had no lump and both a mammogram and an ultrasound were reassuring. Six months later, the small mark had become redder and Susan had a biopsy that confirmed she had invasive lobular breast cancer. Susan’s cancer had spread to her neck, the back of her head, the eye area and her ribs. She is now on her sixth line of treatment.

Dr Michaelis is a qualified air accident investigator. She focuses on how accidents can be prevented by learning from past mistakes, and has used these skills to look at how treatments have failed her. In doing so, she has identified the need for a new approach.

I congratulate the hon. Lady on securing this really important debate. Does she agree that specific forms of cancer like lobular breast cancer require specific funding, research and treatment, and that a one-size-fits-all approach is going to fail millions of women? I declare an interest in asking this question in that last year I was diagnosed with lobular breast cancer. I am cancer-free now, thank God, as a result of the help of the Royal Marsden hospital. Tragically, that is not the case for many, many women in this country.

I thank the hon. Lady very much for that intervention and for sharing her personal story.

I pay tribute to Dr Michaelis for her research and campaigning on lobular cancer. I hope that all Members have received their Dr Susan Michaelis rose this week, named in her honour, and will plant it as a reminder of the urgency of her work.

There are so many other stories. Katie Swinburne was 47 when she was diagnosed with invasive lobular cancer in her left breast, leading to a double mastectomy, radiotherapy and 10 years of targeted chemotherapy. She writes:

“It is very hard to accept that none of my treatment is specific to lobular breast cancer and no one can tell me if it is working or has been effective…I find myself living in fear of recurrence. I deserved to have an early diagnosis. I did not get this. I deserve a specific treatment; I do not have this. I have three young children; they deserve to have a mum. I deserve effective follow up; I do not get this. I need you to change this for me, my husband, my family, all the women with a lobular diagnosis and all the women who will be diagnosed in the future.”

Emma Hunwick writes:

“I was a happy, healthy and relatively fit 49-year-old professional woman when I noticed a tiny pull in my right nipple. No lump, no other obvious external changes. An annual medical and referral just 12 days later resulted in a clear mammogram and a clear second 3D mammogram. An ultrasound then reported an area of 2 cm of concern. I rapidly went from ‘caught early’ to borderline stage 2 breast cancer. After my mastectomy I was informed that I was in fact stage 3c invasive lobular breast cancer…I am now at high risk with predicted survival outcomes at 10 and 15 years of approximately 45% and 30% respectively...I need to know that the vital scientific research into lobular breast cancer is being done now. Not next year or in 10 years but starting now, so that I might survive longer and continue to work with less worry about whether the standard monitoring tests that missed my first cancer, will miss a recurrence.”

I thank my hon. Friend for raising this very important issue. I was diagnosed with, treated for and cured of breast cancer this year, in a very timely way. I was very grateful to be told that it was one of the best cancers to have, because there is so much research into it and treatment for it. It is unimaginable that someone could be treated for a different type of breast cancer for which the research and treatment are not available. I am sure my hon. Friend will agree that this situation needs to be addressed immediately, because we cannot have these inequalities. Lobular cancer should be on a par with other breast cancers in terms of treatment.

I thank my hon. Friend for that intervention. She makes the point extremely well. How can it be that there are so few targeted programmes to improve the diagnosis and treatment of a cancer that affects 15% of breast cancer patients? How can it be that such poor information is provided to women that does not empower them to seek help when the symptoms of lobular cancer recur? How can it be that women are lured into a false sense of security when they receive a clear mammogram, or are fobbed off when they raise concerns?

We need to do better for women affected by lobular breast cancer, in memory of Heather and many more women like her who will not live to see their children grow up. We need to do better for women like Dr Susan Michaelis, who are living today with their lobular cancer being held just about at bay by generic breast cancer treatments, but who live with the constant anxiety that one day the treatment will stop working. We need to do better for the 22 women today and the 22 women tomorrow—the 22 women every single day—who are diagnosed with lobular cancer.

I have a number of asks to make of the Minister. Will she commit to investigate why there are so few targeted programmes to improve diagnosis, research and treatment of a cancer that affects 15% of breast cancer patients? Will she confirm that lobular cancer will remain a priority in the Government’s women’s health strategy? Will she take steps to address the lack of information given to women about mammograms, so that every woman is reminded to remain vigilant for non-lump changes in their breasts, including very small changes? Will she take steps to improve the education of primary care doctors on the symptoms of lobular breast cancer, so that women are not provided with false reassurance, but promptly referred for diagnostic tests?

For patients treated for ductal breast cancer, the first five years are critical, but for lobular breast cancer the risk will remain for 10 years and sometimes beyond, yet lobular patients are typically released from surveillance care after only five years. Will the Minister take steps to ensure that there is a specific follow-up pathway for lobular breast cancer? Will she support Manchester Breast Centre’s call for Lobular Moon Shot funding—£20 million over five years—to enable the basic pathology of lobular cancer to be fully understood as the foundation for developing bespoke treatments? Will she look at the fairness of the distribution of research funding to ensure that this funding can be identified without further delay?

It is a pleasure to serve under your chairmanship, Ms Vaz. I thank the hon. Member for Dulwich and West Norwood (Helen Hayes) for securing this debate, and for her very moving speech. I have to make a declaration of interest: I am a governor at the Royal Berkshire hospital in Reading and I have a family member who has shares in a medical company.

I would like to start by giving my sincerest thanks to Dr Susan Michaelis: first, for her rose, which I have to say I first thought was a delivery of parliamentary stationery to my office—but it was not; and for her passion and diligence in running the Lobular Moon Shot Project. I am proud to have pledged my support to the campaign, which will hopefully change the lives of millions. I will relentlessly champion the need for improving cancer research in this House, because cancer research is so important for securing earlier diagnosis and delivering more effective treatment. However, the existing system has numerous challenges that need to be overcome.

Funding is certainly one of the research barriers, but there are wider concerns that the existing pressures on our cancer and wider health service are acting as a barrier to research. The Government have committed to developing a national cancer plan. This could be a real turning point, because cancer services are simply not delivering for their patients. The Government are determining what the cancer plan will look like, and they are fortunate that Cancer Research UK has already produced a comprehensive report titled “Leading on Cancer”, which sets out some of the key recommendations that they should consider on all matters of a cancer plan. I will highlight some of their points regarding research, which I suspect would significantly improve the chances of making the Lobular Moon Shot Project a reality.

Cancer Research UK makes it clear that the Government’s cancer plan needs to cover workforce planning, and physical and digital infrastructure. That would give NHS services the capacity to carry out clinical research and would reverse the current trend whereby clinical research is seen as a “nice to have”, rather than as something that is deeply integrated into cancer outcomes. Cancer Research UK’s report also makes it clear that long-term planning is important in giving healthcare systems notice of innovations coming down the track so that the adoption and implementation of those new treatments can be planned for appropriately.

It is an honour to serve under your chairmanship, Ms Vaz. I thank my hon. Friend the Member for Dulwich and West Norwood (Helen Hayes) for securing this debate, and I concur with my hon. Friend the Member for City of Durham (Mary Kelly Foy) about health outcomes for those diagnosed with cancer.

One of my most difficult days was when my wife was diagnosed with cancer. She has now thankfully recovered but, looking back at her cancer and her diagnosis, the fact that it was caught early and was seen as a cancer with greater success outcomes shows the disparity of outcomes—particularly for those with lobular breast cancer, as my hon. Friend the Member for Dulwich and West Norwood described.

I pay tribute to the Lobular Moon Shot Project, which aims to give lobular cancer the attention and funding it needs, so that it can be better understood. Lobular breast cancer is the second most common form of breast cancer and, as has been said, accounts for about 15% of all breast cancers, yet there is still not enough research being undertaken.

My hon. Friend mentioned my constituent Emma, who is in the Public Gallery. Emma recently attended my constituency surgery and told me of her experiences with lobular breast cancer. Because of the way it presents, it was not picked up by a mammogram, and it took an MRI—facilitated through a routine private healthcare check—for it to be diagnosed. As has been said, it was initially thought to be a stage 2 cancer, but it was in fact stage 3. Following her diagnosis, she underwent a double mastectomy, followed by chemotherapy for six months, and then 15 sessions of radiotherapy. In Emma’s case, her cancer is likely to return, which leaves her with a very uncertain future for years ahead.

On the current data collection framework on lobular breast cancer, there is a lack of documented research about outcomes for and recurrences of lobular breast cancer. Indeed, there is currently just one trial available in the UK for lobular breast cancer patients. This leaves women like Emma unprepared for the potential impacts that the cancer will have on them further down the line. Given this position, I would be grateful if the Minister could address not only the points raised by my hon. Friend the Member for Dulwich and West Norwood in her asks, but her comments on what can be done to secure more regular MRIs—as was shown in Emma’s case, having more regular MRIs is the only thing that will pick this up—and to ensure that there is greater data collection and transparency on the effects of lobular breast cancer.

It is a pleasure to serve under your chairship, Ms Vaz. I thank the hon. Member for Dulwich and West Norwood (Helen Hayes) for her story on behalf of her dear friend and for leading the debate. We have been very privileged to hear contributions from courageous hon. Ladies to my right and to my left, who have told their own personal stories, which contribute to this debate. It probably also humbles us to have those contributions. Every person who has come here today to make a contribution will have an example of someone they love who has been affected.

Westminster Hall is a great place, as the Chamber would be, to raise awareness and to discuss these matters. I am sure that many will not be fully aware of this insidious brand of cancer, or of its specifics. I am personally grateful to be able to give one example, but also to discuss these issues.

As my party’s health spokesperson, these issues are incredibly important to me. Indeed, they are important to us all; we are all here for the same purpose and it is vital for us all to be here. I know that we will all have had some journey experiencing cancer within our family or close to home. Not long ago, I met in my office a constituent of mine who was diagnosed with lobular breast cancer. I think that, whenever we meet someone who has come through that journey and thankfully is on the other side and alive today, we thank God, as the hon. Member for Maidstone and Malling (Helen Grant) did. Ultimately—I say this respectfully to everyone here —that is where the power lies for healing: with our God.

The hon. Lady explained that there is not enough research into the specifics of this cancer, let alone more access to medication that lessens the impacts of the suffering. Perhaps the Minister will have an opportunity, through civil servants, to check what research and development there is on this specific lobular cancer to help save more lives, make lives better and give people hope for the future. Ultimately, in this House, we are tasked to give hope—not because of our words, because our words are not important—to those out there who face this reality of what the future will hold for them.

I associate myself with what we have heard in this very powerful debate. I commend the hon. Member for Dulwich and West Norwood (Helen Hayes), and I commend the family who are sitting in the Gallery. Cancer is a thief in many homes, and I commend them for their bravery.

Does my hon. Friend the Member for Strangford (Jim Shannon) agree that, across the UK, we need more investment, more research and more clinical trials, and that it is for this Government to step into the breach and do just that?

My hon. Friend is right. We are fortunate that Labour has set aside £26.3 billion for the NHS. We have to recognise that commitment, and I hope the Minister will be able to tell us that money will be set aside for the very invasive disease to which my hon. Friend refers.

ILC currently has no specific treatment and, for those who have been diagnosed, it behaves very differently from the more common type of breast cancer. As we look ahead to the next 10 years, it has been great to learn more about the Lobular Moon Shot Project, which has been supported by this Government, the last Government and hundreds of Members. Everyone in this room supports it, everyone in the Gallery supports it, and everyone outside this room supports it too.

The project was set up in 2023, which is fairly recent. At my age, the years go incredibly fast, but 2023 feels like yesterday. The project seeks to lobby the Government to secure the research funding needed to understand the biology of lobular breast cancer. The project has stated that a major research package is estimated to cost some £20 million over five years, but it has not been prioritised as it should have been. I reiterate what the hon. Member for Dulwich and West Norwood said, and I ask that the research is prioritised. The Minister may not be able to tell us about everything that is happening, but we need to hear that commitment.

Some fantastic charities undertake amazing work to support those living with breast cancer, and I have met them both in Westminster and at home in my office, and their work is instrumental in helping people to cope with the physical, mental and emotional side of dealing with a cancer diagnosis. One person will have the cancer, but their family and friends are also affected, as the hon. Lady said.

With this type of cancer, there is a risk of recurrence or spread. Up to 30% of early-stage primary patients will experience spread to their organs, which can be a number of years after the initial diagnosis. This highlights again the need for greater research and funding to ensure early detection and to prevent the cancer’s spread.