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Edinburgh Breast Cancer Special Symposium (EBCSS) on Saturday 25th February

1st March 2023 Research

Novartis sponsored session

The Make 2nds Count team, trustees and volunteers attended the Edinburgh Breast Cancer Special Symposium (EBCSS) on Saturday 25th February.
The event hasn't been held for several years due to COVID, so there was a lot of interest now that it's finally back face to face.
 
The biennial event brings together scientists, healthcare providers and patients to discuss the latest thinking in breast cancer.  There were updates on the genomics of drug resistance, CDK4/6 inhibitors, emerging immunotherapies for breast cancer, lobular breast cancer strategies and more, with speakers like Professor Lisa Carey and Professor Charles Perou flying in from the US to present.
 
Our Chairperson, Professor David Cameron chaired a series of scientific sessions on ER+ and lobular breast cancers, looking at endocrine and CDK4/6 inhibitor resistance.  Our Research Committee member, Dr Olga Oikonomodou, chaired the late afternoon session which covered the genomics of drug resistance and the HER2 targeted agents including anti drug conjugates (ADCs).  Other topics covered on the day included updates on stereotactic radiotherapy for oligometastatic disease, lobular breast cancer, immunotherapies and clinical genetics and risk. If our patient community is interested in any of these research topics, please let us know and we will feed into the Research Education sessions we are considering running later this year.
There were also a number of sponsored satellite symposia sessions.  Make 2nds Count trustee, Lesley Stephen, took part in a Novartis sponsored session called 'Shared decision making in Breast Cancer: Crucial conversations to have with your patient', alongside Leanne Pero of Black Women Rising and Professor Clare Foster, Director of the Psychosocial Research centre in Southampton. 
Lesley and Leanne discussed positive and negative examples from their personal experiences and from other patients.  They discussed how patients want to be listened to, to be treated as a person and not just a patient, to feel respected, be able to ask any question, not to be bombarded with medical jargon and ultimately to feel an equal partner in their treatment and care.  
Lesley provided data from the two surveys that Make 2nds Count have funded in recent years. The MBC Trials survey showed that 59% of MBC patients felt 'not at all or slightly involved' in their treatment, and some felt 'a little bit written off'. 
 
The LIMBER survey looked at Quality of Life issues in MBC patients - respondents shared their stories of compassion and empathy, or lack of, with their clinicians - 'I have never seen a scan or had things explained to me'.  It appears that patients have very mixed experiences of shared decision making with their healthcare team. 
 
The session didn't conclude with any 'call to arms', but hopefully Novartis will look at taking this important issue forward.