Most people have perceptions of cancer in their heads, fairly fixed perceptions too. They think about all the stuff they see daily on TV, in the main press, and people they know. The big cancers set the scene.

Most doctors know about big cancers. They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy. Many survivors will have side effects of their treatments, e.g. perhaps temporarily losing their hair. More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of disease is a common term I see).

Most NETs are not like that! Whilst it has a reputation for being a generally slow-growing type of tumour at the lower grades (but very sneaky though!), offers a good outlook/prognosis for many, has many different types of treatment modalities, it can frequently present at an advanced stage and become incurable; and/or offer some quality-of-life challenges. For example:

• Not many doctors know a lot about it (although this is getting better – read here (Find a Specialist).
• Many patients will have gone through extended diagnostic periods, perhaps months, years in extreme cases. In many cases it can be ‘silent‘.
• Only doctors who know a lot about it, really know how to quickly diagnose it. Only they know how to properly treat it. It’s a very individual disease, there are many factors involved.
• Another key difference with NETs is that many people will have an associated ‘syndrome‘ and this might have been with them for some time before diagnosis. The symptoms of these syndromes can sometimes be rather debilitating, even after treatment.
• Many people will never be disease free, nor will they be given a status of full remission. Their surveillance (scans etc) could continue indefinitely.
• Many people could be given treatment indefinitely, in particular, Somatostatin Analogues.
• Many people will live with the consequences of this cancer for a long time and this plays on their mind as well as the effect on their body.

There’s a lot of talk about something called ‘unmet needs’ and quite right too. However, there’s doesn’t appear to be enough action to deliver those unmet needs in our community. This is a highly prevalent cancer, and many people live a long time with the consequences of cancer.

Before you receive treatment, always ask what the side effects might be, how long they might last and what support you will get to treat or lessen them. Don’t be afraid to ask, you deserve to be told.

p.s. I look well but you should see my insides!

Neuroendocrine is not your average cancer but it can be pretty mean. That might explain why there are so many hardened NET patients out there!

#NeuroendocrineCancer would love you to ignore this post. Don't let it win so please RT. https://t.co/sMbDDexdr3 via @RonnyAllan1

— Ronny Allan (@RonnyAllan1) March 3, 2016