I was diagnosed with a Pancreatic Neuroendocrine Tumour in 2017. It was found incidentally when having a scan for something else. I was lucky that it was found so early and was monitored via MRIs for 7 years. During that time I was never told it was cancer, I was never given any advice about symptoms to look out for, I was provided with no information about my condition and not referred to NECA or any other support service. It was left completely up to me to learn about the condition, and it was hard to find relevant information online.
My GP was aware of the diagnosis and despite me going multiple times with a range of symptoms, they never made the connection to the tumour. The surgeon who had been monitoring me also gave me no information or support to understand what was happening with my body.
In the end I asked for a second opinion and was referred to Peter Mac. Things changed pretty rapidly from then on and I underwent a distal pancreatectomy and splenectomy in 2023. I was amazed by the change in symptoms once the tumour was removed, all these symptoms that my GP had brushed off as aging/menopause/ nothing to worry about, were suddenly gone. I had been feeling terrible for years and not one medical professional made the connection between my cancer and how I had been feeling. I had also developed Type 3c diabetes as a result of pancreatic damage and that was not picked up either.
I now have ongoing scans to monitor if it has spread or returned, insulin to control the diabetes and antibiotics because I have no spleen, but I am grateful that despite the lack of support, information, recognition of the disease and it’s impacts by my doctors, I am one of the lucky ones so far. I know that if there was more understanding of the disease and its effects my experience wouldn’t have been so isolating. The lack of knowledge within the medical profession was really shocking to me, as was the lack of information and support offered after diagnosis.
