Patient Resources
Understanding Lobular
At LBCUK we want everyone to be able to be their own best advocate. When you understand your disease, you’re able to ask for the information and treatment that is right for you.
Here you’ll find accurate and up-to-date information about Lobular Breast Cancer, to help increase your knowledge and support conversations with your medical team. There are also resources you can download, including our digital postcards for different stages of diagnosis, our MRI request template letter and an inforgraphic on potential secondary spread.
Take what you need, when you’re ready.
Resources You Can Download
Our free resources provide information that you can read when you are ready to learn more about Lobular Breast Cancer or that you can also share with your medical team. There is also a template letter for requesting on-going MRI monitoring.
Lobular Breast Cancer Information Leaflet
Download our new Lobular Information Leaflet to share with your family, friends, medical team and across your social media.
We will also have hard copies of the leaflet available for display in key locations across the UK.
MRI Request Letter Template
If your primary tumour(s) were completely or partially missed on mammogram, this downloadable template helps you to construct a letter to your medical team asking for annual MRI monitoring following surgery. It has worked for many people despite initially being told no.
NHS England 2022 ILC Statistics
Download the 2022 data from NHS England on Lobular Breast Cancer. This is the first time that Lobular-specific data has been published – in any part of the UK.
We worked with the National Disease Registration Service (NDRS) to produce this data and will be working with them to provide annual updates.
What is Lobular Leaflet ELBCC
This excellent leaflet produced by the European Lobular Breast Cancer Consortium provides a great introduction if you have just been diagnosed or know little about Lobular Breast Cancer.
abc diagnosis Leaflet Secondary Signs
Developed by abc diagnosis founder and patient advocate Jo Taylor, this excellent resource approved by NHS England, indicates where Lobular Breast Cancer can potentially spread to around the body, and describes the warnings signs & symptoms to look out for.
Treatment Support Digital Postcards
At LBCUK, we have developed a series of digital postcards created with Lobular patients, health psychologists at De Montfort University & patient advocate Jo Taylor from abc diagnosis.
You can print off or download each digital postcard to your mobile/tablet. Each card provides support during different stages of primary Lobular Breast Cancer treatment, and the At Diagnosis card is also useful for individuals with a secondary diagnosis. One side of the card includes things you might like to know about your stage of diagnosis and treatment, and the other side includes some suggested questions you might like to ask your medical team.
A big thank you to De Montfort University and the National Lottery Community Fund Awards for All programme for funding the work.
Professional Health Care Digests
At LBCUK, we’ve developed three short professional digests to improve understanding of Lobular Breast Cancer in both primary and secondary care. These were created with the generous pro bono support of Costello Medical as part of their Women’s Health Awards. They provide clear, evidence-based guidance on diagnosis, treatment, and monitoring to help healthcare professionals give the best possible care.
A big thank you to Costello Medical for their support in helping us make these resources available to patients and healthcare teams.
You can download and share them with your GP, practice nurse or breast care team:
- For GPs and Primary Care Teams
Lobular Breast Cancer: Key Points for Primary Care - For Breast Surgeons, Breast Care Nurses, Oncologists & Radiologists
Lobular Breast Cancer: Key Points for Secondary Care - For Primary & Secondary Care Teams
Detection & Monitoring of Lobular Breast Cancer