Supporting the

Neuroendocrine Cancer Community

So you have received your diagnosis from your Multi-Disciplinary Team and if, like me, have just learnt very long, new words all you heard was “cancer”.

What do you do first?

After getting home in a bit of a daze, cried, had a cup of tea (or something stronger) you open up Google.

STOP.

Read any booklets you have been given so that you have all of the actual language and words used before racing off down a rabbit hole of complete doom. It is a huge minefield online and you could end up on a USA site (or worse) even more confused and horrified.

The NHS does have information available online and do point out links to Cancer Research and Macmillan which are very useful. They lead in turn to the site Neuroendocrine Cancer UK which is much more supportive and delves deep into each type of NET in relation to where it is in the body.

Think of it like learning a new skill, such as walking out on the hills.

NHS online – gives you the basic information – symptoms of NETS, causes of NETS, diagnosing NETS and possible treatment of NETS. In other words, a walk round a park with information where the car park is, a tea room and toilets.

Cancer Research/Macmillan online – more sympathetic (even gentle and talkative) and more explanatory. So our park walk in this case would be a walk round a lake with information on footwear, waterproofs and any extras you may want to take.

Neuroendocrine Cancer UK – what they don’t know isn’t worth knowing! Informative and factual, laying out the information that is easy to digest and understand and most importantly, the human element. They point out where you can get help, what questions to ask, how to approach your MDT and even things you wouldn’t consider.  In our walking example, you have gone from a walk round the park and have now escalated to a rocky hill with a group of people relying on you to get them from A to B safely.

The NHS deals with hundreds if not thousands of medical issues and only has a finite amount of time (and sometimes limited characters) to slot them all in online. Very good if you want the meaning of something you heard such as Somatostatin Analogues or CT scan. Your NHS MDT or specialist centre are trained in all things NET and can and always will answer whatever you are worrying about – but sometimes you don’t know what your actual question is.

It does feel as though you are going over the same information several times but it will sink in and you will understand whatever “that” is.

Be patient with yourself, be kind to yourself. You are not stupid, you are learning a new way of living and it is hard! It also takes time.

by Karen Edwards