Supporting the

Neuroendocrine Cancer Community

This is the sort of situation where terminology can trip us up. 

I was diagnosed in 2009 with metastatic NETs. This meant that over the space of, probably, several years, the cancer cells from the original growth in my small intestine had quietly seeded themselves throughout my body including a substantial batch peppering my liver. 

There were, and still are, tumours in my spine, diaphragm & various other places.  

The medics call this Stage IV – and in many other cancers it would have meant curtains for me and pretty rapidly, too. But this is where the Grade of the tumours became relevant. 

Mine are Grade 1, ie. sluggish, slow-growing cells that take their time increasing. Surgery removed some of the tumours plus a largish chunk of small intestine that was too diseased to keep and I was put on monthly injections of a somatostatin analogue (SSA) called Octreotide to inhibit the growth of the cancer. 

I was also referred to a dietician and given a host of supplements to ensure good nutrition. I was in palliative care, that is, the cancer was incurable but I could live with it and live well. 

I went back to a normal(ish) life – not the same as before my diagnosis but with a lot to enjoy and to be grateful for.  

My stability lasted for around ten years until 2019 when the tumours showed signs of mobilising again. Enter PRRT (Peptide Receptor Radionuclide Therapy). Over the space of about a year, this zapped the growths into temporary submission. 

Now in 2021, the signs are promising that there’s another length of stability up ahead. I don’t know how long that will be, but I’ve learned to make the most of every symptom-free day. 

So…… my metastatic, Stage IV tumours are still there, I’m still in palliative care and will be for the rest of my life. But, here’s the important bit – that is emphatically not the same as end-of-life care although the two are often used interchangeably.  I’m very fortunate to be treated by an excellent specialist NET team (extremely important) and I can look forward with pleasure to all the good things that life has yet to bring. 

I hope my story will help some of my fellow NET patients who may be in a similar situation. And now I’m off to enjoy the sunshine and get on with giving the garden its Spring overhaul.

Best wishes