In October 2018, Hackney Council (A London Borough) unanimously passed a motion on rare and uncommon cancer. On the 28th March, City and Hackney Clinical Commissioning Group and Hackney Council, held a joint “rare and uncommon cancer” seminar with presentations and discussions on Neuroendocrine Cancer, Hepatocellular Carcinoma, HPB cancers and Sarcoma.

There were presentations from clinical leads, surgeons and specialist nurses talking about diagnosis, treatment pathways, GP resources and the advances in treating some rare and uncommon cancers.

Nikie Jervis, NETPF Patient Support & Information Nurse Specialist, gave a brief overview and spoke about some of the key issues related to malignant Neuroendocrine Neoplasms (Neuroendocrine Cancer):
– the complexity of a type of cancer that can originate almost anywhere in the body, that may produce a multitude of differing symptoms – that often mimic more common conditions – resulting in low suspicion of cancer and delayed presentation and diagnosis.
– the limited awareness and understanding of the diagnosis once made, with an assumption that longevity equals good, indolent equals benign, looking well equals being well and the reality that not all cancers are treated with chemotherapy.
– the often unacknowledged huge physical and emotional burden of disease, felt by those living with Neuroendocrine Cancer: feelings of isolation, exhaustion, anxiety and depression that are compounded by the unpredictability of the disease and its symptoms.

Neuroendocrine Cancer patient and retired GP, Paul, also presented at the event and spoke about his experiences with Neuroendocrine Cancer. “I found it remarkable that I might have a stage four cancer inside of me when I was feeling reasonably fit but was told it might have been growing inside of me for 3-4 years… The advice I would give to patients now is see the NET Nurse Specialists and attend a patient support group. I didn’t think I would find it at all helpful but actually found it incredibly useful”

NET Patient Foundation wants to spread this format across all councils in the UK. For more information click here