The question “How has 8cm+ of tumour not been seen on a mammogram?” was what started me on my journey to setting up LBCUK.

I was diagnosed with Lobular Carcinoma in Situ, a risk factor for breast cancer, in 2014 after first visiting my GP four years before with a strange sensation in my breast. I had a lumpectomy but no invasive breast cancer was found.

Still having strange tugging sensations and stabbing pains, I continued to ask for tests. Over three years I had a number of mammogams, ultrasounds and biopsies that all came back clear.

It wasn’t until 2017, returning again to the Breast Clinic with a now prominent dent in my breast, that 1cm of a Stage 2 invasive Lobular Breast Cancer tumour was finally found on a mammogram. Following a mastectomy, there were actually two 4cm tumours, with smaller tumours throughout my right breast.

Stunned by what had happened and the apparent lack of information about and tools for detecting Lobular, I launched myself into the world of patient advocacy, becoming the UK patient advocate for the European Lobular Breast Cancer Consortium (ELBCC).

As I began speaking more with international researchers and clinicians, and meeting other patient advocates from around the world, I realised that we needed things to change here in the UK.

I decided to set up Lobular Breast Cancer UK and put a call out across social media. Eight incredible women, all who had had a Lobular Breast Cancer diagnosis, stepped up to help launch the charity.

We’d planned to launch in 2020, but the Covid pandemic and a local Lobular recurrence in my reconstructed breast, meant that we delayed launching until September 2021.

Working on LBCUK is a passionate commitment for us all. We are primarily volunteers and often with full time jobs. So I take time to support my emotional, mental and physical health by being outdoors on or in water, going up mountains, going to the theatre or seeing a gig, or chilling with my partner Shell and our dog.

As well as running LBCUK I work as a freelance consultant in the cultural industries and my clients are small independent charities, arts organisations and museums. Having this knowledge has really helped in establishing and developing the charity.

By setting up LBCUK with these incredible women, we are a step closer to ensuring that everyone with a Lobular diagnosis lives and lives well.