My father Robert was diagnosed with Cancer of Unknown Primary (CUP) in 2010 at age 68. He had retired just one day prior to his diagnosis. Being a Interventional Radiology Nurse at the time, I was able to help my father navigate the health system, coordinating all my “father’s tests” and within just 10 days he had had an abdominal ultrasound, CT chest, abdomen and pelvis, PET scan, gastroscopy and liver biopsy, but no primary could be confirmed. I believe without my knowledge of the health system this process would have been much longer.
The unknown aspect of his diagnosis was incredibly difficult for my father and our family to accept and understand. I spent many hours explaining the concept of ‘unknown primary’ to my family. My father survived 2 years after his diagnosis, thanks to his oncologist treating according to his ‘best guess’. My father described the ‘not knowing’ as torture. He always lived in hope that his primary would be discovered, even just so he would know. He struggled to understand how other cancers had so much attention, funding and support, but how “this insidious cancer” was completely unknown by almost everyone he talked to.
Having also nursed a number of patients with CUP, I understand that my father was not alone in his feelings. Experiencing CUP as a carer both personally and professionally drove me to get involved with the SUPER study so my experiences could contribute to improving care outcomes for CUP patients. Better support is absolutely essential for these patients. Psychosocial support and help negotiating the health system, coordinating the extensive tests and fast track diagnosis should be a priority for CUP patients.