I was diagnosed with Stage 4 metastatic melanoma in July 2019 and after treatment with immunotherapy (Ipilimumab and Nivolumab) the only tumour showing (and growing) on CT scans was my left Adrenal gland. This was removed laparoscopically on 2nd Dec 2020 and the histopathology report showed adrenocortical cancer. I was referred to the Endocrine Team at QE Hospital Birmingham (the hospital where all of my cancer treatment has taken place) and Miriam Asia put me on an “adjuvant therapy” course of Mitotane and in touch with AMEND. I had no idea how rare this cancer was.
My interest in working as a Trustee with AMEND comes from my technical and business background, my obvious interest because of having ACC and also from six years of working as a Non-Executive Director at the Royal Orthopaedic Hospital in Birmingham, which gave me an insight into how the Health Service actually works and how to try to make improvements to patient care.
In addition to becoming a Trustee I would like to build a comprehensive knowledge base of ACC patient experiences with the aim of trying to create an information source both for patients and specialists so that care and outcomes continue to improve