Today we have produced 2022 data from NHS England on Lobular Breast Cancer. This is the first time that a Lobular-specific data report has been published – in any part of the UK.
We collaborated with the National Disease Registration Service (NDRS) to produce this report and will be working with them to provide annual updates. This robust data can be used in Lobular research, for developing evidence for improved treatment guidelines and for patients to share with their medical teams.
There is a delay in data due to the time it takes to collate the information, so these figures are for 2022, with 2023 due later this year.
Lobular is not a "rare" cancer in women
The data reveals that Invasive Lobular Carcinoma (ILC) is not a “rare” cancer in women. It accounts for around 15% of all new breast cancer diagnoses and is the second most common sub-type of breast cancer. There are approximately 8,400 Lobular Breast Cancer diagnoses in the UK each year.
As with the SEER data produced by LBCA, we have provided the same statistics for invasive non-lobular breast cancers to serve as a comparison group and show how Lobular differs as a disease.
There are clear gaps in data where evidence is not being captured, especially in the lack of data about the number of people with metastatic Lobular Breast Cancer. This is an unacceptable problem across all breast cancers and not just Lobular.
It is the first time that we have had annual statistics for Lobular Breast Cancer for any country in the UK. It is so important that we have the data about who, how many people, and stages of diagnosis for Lobular Breast Cancer in the UK. It demonstrates the distinct nature of the disease and provides information that will assist in Lobular research and developing evidence to improve treatment guidelines.
At LBCUK, we approached the National Disease Registration Service (NDRS) after being inspired by Lobular Breast Cancer Alliance’s success in accessing Lobular incidence reports in the US. We want to thank the analysts at NDRS and we will be working with them to provide annual data updates. Our next steps are to access the data for Northern Ireland, Scotland and Wales, and to work alongside other charity partners to obtain enhanced data for metastatic disease.