Lobular Breast Cancer

Helen Hayes Excerpts

Tuesday 10th December 2024 Westminster Hall

[Helen Hayes (Dulwich and West Norwood) (Lab)]

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.

[Jim Shannon (Strangford) (DUP)]

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.

[Helen Hayes]

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.

[Melanie Ward (Cowdenbeath and Kirkcaldy) (Lab)]

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?

[Helen Hayes]

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.

[Helen Grant (Maidstone and Malling) (Con)]

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.

[Helen Hayes]

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.”

Kirstin Spencer’s story is also typical. Diagnosed in 2018, she and had a double mastectomy, but was warned that, especially in the first two years afterwards, the disease could recur in areas such as the scar tissue, chest wall and surrounding skin. She was told that vigilance and well-managed medical follow-up were everything. Within a year of her diagnosis, she developed red-flag symptoms that were repeatedly dismissed by her breast specialist. She was refused follow-up treatment and sent for psychological counselling. By the time that a new GP listened to her concerns, substantial recurrence was confirmed, with extensive metastatic disease.

My mother-in-law Cressida’s story is very different from Heather’s, and we are all so grateful to the doctors who treated her and for the subsequent 22 years of health that she has had and continues to enjoy. Cressida did not have any grandchildren when she was diagnosed, but a prompt diagnosis meant that she has been able to be closely involved in the lives of eight subsequent grandchildren, as a much-loved granny. But Cressida’s outcome was about luck rather than design, so much so that it was only very recently, when reviewing her medical notes, that she found out that the type of cancer she had was lobular.

Breast cancer survival rates are directly impacted by the stage of diagnosis. Late diagnosis, which is all too common for lobular breast cancer, leads to far worse outcomes. To improve this situation, we need much better awareness of the full range of breast cancer symptoms, including the very small skin changes that are typical of lobular cancer. Not all cancers cause lumps. A clear mammogram does not provide absolute reassurance, because lobular cancer typically does not show on a mammogram. We need lobular-specific research and treatments.

Staff at Manchester Breast Centre have stated that they are able to do the research to understand the complete pathology of lobular breast cancer—research that has never been done—to pave the way for bespoke treatments to be developed. This will take five years and cost £20 million—moonshot funding that will be recouped many times over in the tax revenue paid by women like Heather, who would be able to continue working, and in the NHS costs that will be saved.

Hundreds of MPs in the last Parliament and this one have listened to the stories of constituents affected by lobular breast cancer and pledged their support for the Lobular Moon Shot Project. Lobular cancer is the sixth most common cancer in women. It is more common than ovarian, brain, central nervous system, non-Hodgkin lymphoma, pancreatic and kidney cancers. I know that the Minister cares deeply about women’s health equality and I put it to her that lobular cancer is a women’s health equality issue.

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

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.

[Helen Hayes]

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?

I know the heartbreak that Heather's death has caused for all who knew and loved her, and most especially for her family. We can act to ensure that, in future, women like Heather who are diagnosed with lobular cancer can live to see their children grow up, and it is imperative that we do so.

--- Later in debate ---

[Helen Hayes]

I thank all hon. Members who have contributed. They have brought their constituents’ stories and their own personal experiences to the debate. We have many issues to work on in this House, but there is a particular responsibility when an issue presents itself in a personal way through a devastating story, whether that is through a constituent, somebody we know or our own personal experience. When we see an opportunity for things to be done, it is imperative for us all to bring that to this place. I am grateful to hon. Members for the spirit in which the debate has been conducted, the high level of consensus and the high level of commitment to see change for patients with lobular cancer.

I am grateful to the Minister for her engagement with the debate. I know she is committed to this area. In closing, I ask that she looks in further detail at two issues. The first is the proportional allocation of the funding available through the NIHR for research into breast cancer. We have heard again and again today that lobular cancer accounts for 15% of all breast cancers, yet currently attracts only a tiny fraction of dedicated research. We know that the improvements we have seen in treatments and outcomes for different types of cancer diagnosis always hinge on the investment put into research to find the cures. There is a disproportionality there that can and must be changed.

The second area I ask the Minister to look at in a little more detail is the advice and guidance given to clinicians in primary care, to make sure that there is a consistent understanding of the symptoms of lobular cancer and its distinctiveness as a disease compared with ductal cancer, and to make sure that every woman presenting to her GP is able to access accurate advice and swift onward referral. It is important across the whole range of women’s health conditions that women are trusted and listened to when they present with symptoms to their GP, and this is an area where I believe primary care can do better, be more consistent and deliver better outcomes as a consequence.

I pay tribute once again to Dr Susan Michaelis and all those who campaign on this issue on the basis of their deeply difficult personal experiences. I give my commitment that for as long as I have a voice in this place, I will continue to work on this issue until we see the changes that are needed.

[Valerie Vaz (in the Chair)]

I thank everyone who took part in and attended this debate.

Question put and agreed to.

Resolved,

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