Sometimes people are nervous when speaking to someone diagnosed with cancer. They are embarrased, they don’t understand the specific cancer, they don’t understand the prognostics and are scared to ask more. News outlets and social media don’t really help them get to grips with these situations, everyone is receiving chemotherapy and will therefore lose their hair and everyone is going to die right?   Wrong, the cancer story is changing.  Sure, many people do die of cancer, and that’s heartbreakingly sad.  But today, many cancers are now treatable, many people survive, some even living with cancer like they would with a chronic disease.  Many have their cancer removed curatively when caught at an early stage.

Neuroendocrine Tumours (NETs) are no different in this respect to many other cancers; but with one particular exception – they are a heterogenous collection of primary types, each with its own vagaries and special terms used.  With NET, you can have a primary in nearly every part of the body, you can have low or high stage, low or high grade, well differentiated or poorly differentiated (deemed a carcinoma in this case), indolent or aggressive, functional or non-functional, hereditary or sporadic (non-hereditary), it’s a minefield. 

I’m guilty of these minor social misdemeanours too, no-one is perfect but certain comments can come over all wrong and get people’s backs up, despite the best intentions of the commentor. So here is my take on what you should not say to someone with NETs.