Lobular Breast Cancer

Debate between Helen Hayes and Helen Grant

Tuesday 10th December 2024 Westminster Hall

[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.