Lobular Breast Cancer

Mary Kelly Foy Excerpts

Tuesday 10th December 2024 Westminster Hall

[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.