I’m Sara, mum of two, living in Aberdeen since 2008. For the past 20 years I have worked as a psychosocial oncologist. I lead research into the impact of cancer and treatment on individual’s lives and methods for involving different stakeholder groups, particularly patients, in the design and delivery of care. This became all the more pertinent in 2022 when I began my own cancer journey and became a patient.

At the time I was working with the Breast Team in Aberdeen to develop a new intervention for managing fear of breast cancer recurrence and noticed a small lump in my right breast. I lived with this for a while thinking it was just being immersed in the project that had lead me to overthink my body but I had the growing realisation that something just did not feel right. This was not the lump itself per se but a more general feeling of ‘wrongness’ in my right breast. 

I went to see a GP in August 2022 and was dismissed as being a 47 year old with lumpy breasts. I use my words very deliberately as her attitude was extremely abrupt and dismissive. It was only through talking to work colleagues that they pushed me to go back and I saw a different GP who then referred me to the Breast Team. 

I had a physical investigation, an ultrasound which then led to a mammogram and then an MRI. The lump turned out to be a benign cyst but it had been sitting within a 6cm, grade 2, Invasive Lobular Cancer later diagnosed as ER+ HER2- . No-one has ever used the term ‘Stage’ and it is not mentioned in any of my hospital letters. 

I then had a single mastectomy in Nov 2023 and it turned out the cancer was actually 8cm with 1 node involvement. I joined a clinical trial (OPTIMA Breast) and was randomised to the no Chemo arm but began taking Letrozole (with monthly Zoladex implants to put me into early menopause) and Abemaciclib (for early breast cancer) and 6 monthly bisphosphonate infusions for three years. Letrozole reduces the oestrogen in my body and bisphosphonates help to prevent oesteoperosis in my bones from the Letrozole.  

Radiotherapy followed in April 2023. I was adamant that I did not want immediate reconstruction as I wanted to feel the loss of my breast and then decide. I am also now equally adamant that this was the right decision for me and that I will never have reconstruction as I feel perfectly whole with one breast. My daughter refers to my scar as a smiley face : )

I assumed when given a diagnosis of Lobular that this would be something I could go and read about as easily as a Ductal breast cancer as it was clearly a type to be given a label. Being an Academic and needing lots of information from evidence-based sources that I could trust, I felt totally lost by the lack of this for Lobular Breast Cancer.

Then I came across Lobular Breast Cancer UK (LBCUK) and I felt a strong sense of trust when talking with Claire and others. I am extremely proud to now be a trustee of LBCUK. So much more is needed for Lobular Breast Cancer and I want to be a part of helping to move this forward.