Introduction
We are working to find out the Top 10 research priorities in the UK for Lobular Breast Cancer by working with people who have been diagnosed with Lobular Breast Cancer, people who may support them as unpaid carers (partners, family members, friends) and healthcare professionals.
We want to drive research that will improve outcomes for anyone who is impacted by Lobular Breast Cancer.
This survey is part of the "Unlocking Lobular: Lobular Breast Cancer Priority Setting Partnership" (PSP) led by Lobular Breast Cancer UK and De Montfort University and supported by the James Lind Alliance.
A PSP brings together people diagnosed with a disease or condition, their families and carers and healthcare professionals to identify the questions they would most like research to answer.
We will use everyone's responses to identify the Top 10 questions for research to answer about Lobular Breast Cancer.
These will be shared with researchers and funders to help drive research that could improve outcomes for everyone impacted by this distinct disease.
We want to hear from people across the UK with different experiences and backgrounds about what matters most to them, including:
- people over 18 who have had a diagnosis of invasive primary (sometimes called early or stages 1-3) Lobular Breast Cancer;
- people over 18 who have had a diagnosis of metastatic (sometimes called secondary, advanced, or stage 4) Lobular Breast Cancer;
- people over 18 who have had a diagnosis of Mixed Lobular Breast Cancer (where Lobular Breast Cancer is diagnosed with at least one other type of breast cancer);
- any unpaid carers, family members or friends (of any age) supporting a person with a diagnosis of Lobular Breast Cancer;
- any healthcare professionals working with people with Lobular Breast Cancer.
To ensure a focused set of priorities, our Steering Group has made the decision to focus our questions on invasive Lobular Breast Cancer, rather than Lobular Carcinoma in Situ (LCIS).
If you are under 18 years old, please discuss taking part with a parent, guardian, or trusted adult before completing the survey.