Invasive lobular carcinoma (ILC) is the second most common type of breast cancer, representing up to 15% of all breast cancers cases, and is the sixth most prevalent cancer among women. This type of cancer may be hard to detect with a screening mammogram or ultrasound, as it spreads in straight lines rather than forming lumps. As a result, these tumours can grow significantly and be diagnosed at more advanced stages. Over the next 10 years, approximately 3.75 million people globally are expected to be diagnosed with ILCs.
Currently, 22 individuals in the UK and 1,000 women worldwide are diagnosed with ILC each day. Unfortunately, specific treatments for ILC are yet to be created for this type of cancer.
Lack of hope in diagnostics and bespoke treatments
During the peak of the Covid-19 pandemic, Heather Cripps, a public servant at the Home Office, experienced severe back pain and was prescribed pain medication for what was initially believed to be a musculoskeletal issue. Unfortunately, her condition worsened rapidly, and she was eventually diagnosed with stage four ILC (the cancer had spread from its primary site). By the time of diagnosis, the cancer had already spread to her spine. Heather underwent chemotherapy for three years but tragically passed away on 30 August at the age of 48.
At a parliament debate on ILC on 10 December 2024, Helen Hayes, Labour MP for Dulwich and West Norwood, said:
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.
Like Heather, many women are diagnosed with ILC too late and with poorer long-term outcomes. This is due to the difficulty of detecting these tumours through physical exams or standard imaging techniques such as mammograms and ultrasounds. ILC cells typically spread through breast tissue in a diffuse pattern, rather than forming a distinct lump.
ILCs: no specific treatments
Most ILCs are diagnosed at a more advanced stage with up to 30% of patients with early-stage primary ILC may experience metastasis to other organs, which can occur many years after the initial diagnosis.
Currently, there are no specific treatments designed for ILC, which is known to have poorer long-term outcomes. The available therapies were not tailored made for the unique biology of this cancer type. Moreover, although MRIs are widely recognised as significantly more effective than mammograms at detecting and monitoring ILC, they are not recommended for use under the NICE guidelines for detection or ongoing monitoring.
Women’s health in the UK has been neglected and underfunded. A report by the NHS Confederation highlights that prioritising women’s health could contribute £319 million in gross value added (GVA) to the UK economy.
Research from Breast Cancer Now shows that breast cancer currently costs the UK economy £2.6 billion, a figure expected to increase to £3.6 billion by 2034.
Lack of investment in research
ILC remains poorly understood, as it is a type of cancer that has received limited research and funding. To provide accurate diagnostics and effective treatments for patients with ILC, further research and financial support are essential to fully uncover its basic biology.
The Manchester Breast Centre has announced its plans to conduct research aimed at understanding the basic biology of ILC, which could lead to the development of targeted treatments. This research is expected to take around five years and require an investment of £20 million. The Centre is collaborating with the Lobular Moon Shot Project.
The Lobular Moon Shot Project was founded in 2023 by Dr Susan Michaelis, a former Australian pilot, to address the urgent need for ILC research funding. This is a £20 million research project and a volunteer-driven initiative supported by an increasing number of women diagnosed with ILC and their families.
Generic government responses
Dr Michaelis was first diagnosed with ILC in 2013 and later diagnosed with stage four metastatic lobular breast cancer in 2021. Her cancer has since spread to her neck, spine and pelvis area, head, eye area, and ribs.
In December 2023, Dr Michaelis, along with several MPs supporting her cause, met with former health secretary, Ms Victoria Atkins. Convinced of the need for action, Ms Atkins agreed to fund the Lobular Moon Shot Project and integrate it into England’s 2024 women’s health strategy, but a change of parliament has not yet seen this become a reality. Currently, the Lobular Moon Shot Project has the backing of over 200 MPs.
Several MPs have written to the government expressing their concerns, only to receive generic responses from civil servants stating that £29 million has been allocated to the Institute of Cancer Research (ICR). However, these responses fail to clarify that the funding is not specifically targeted at lobular breast cancer. Despite repeated efforts from MPs to reach out to the health secretary, Wes Streeting, regarding the project, they have yet to receive a reply.
Health secretary Wes Streeting, and under-secretary at the department of health and social care, Baroness Merron, did not respond to a request for comment from the Canary.
Silence from Labour
Dr Michaelis commented:
Each year, 11,500 people die from secondary (metastatic) breast cancer, yet none of the studies referenced by the government tackle the unique biological challenges of invasive lobular carcinoma. This area remains a scientific black hole, with crucial work still undone. That’s precisely why we are calling for dedicated funding.
The 10 National Institute for Healthcare Research Network studies cited in the government’s letter to MPs are a smokescreen. A closer examination reveals that nine out of 10 of these studies do not appear to address lobular breast cancer. We need to focus on understanding the basic biology of the disease through a ‘Moon Shot’ approach, instead of attempting to repurpose drugs that were not designed for this disease.
Cancer Research UK has allocated no funding to ILC research, and Breast Cancer Now has dedicated less than 1% of their research budget funding. This means the government needs to step in and resolve this unmet clinical need. This would equate to under £240 per person in the UK who would be diagnosed with the disease over the next 10 years.
The former health secretary, Victoria Atkins, had agreed to fund the project. Since the general election in 2024, 180,000 people globally have been diagnosed with ILC, and we are still waiting to hear from the new health secretary, Wes Streeting.
ILCs: the silent killer
Katie Swinburne, diagnosed with ILC at the age of 47, endured a double mastectomy, radiotherapy and chemotherapy and is now on a 10-year endocrine treatment therapy. Her experience was shared during the parliament debate on 10 December:
It’s very hard to accept that none of my treatment is specific to lobular breast cancer and no one can tell me if it’s 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.
Featured image via the Canary
