Supporting the

Neuroendocrine Cancer Community

Rachael’s NET story

Nov 10, 2017

Here is my #NetCancer story so far…. On 29 February 2016 I was told that one thing that no one ever wants to hear, especially at the age of 32. ‘I am very sorry but you have cancer’. I was so shocked I couldn’t even blink to shed a tear. I had never even heard of neuroendocrine before. Despite feeling sporadically unwell for several years I couldn’t believe what I was hearing. I looked perfectly well and even played a lot of sport and took care of my health generally. But my doctor always told me ‘you’re too fit and young for anything too serious’. I was even told ‘it was all in my head’ and falsely diagnosed with anxiety and treated with CBT. I cut out gluten for a whole year which was challenging as a vegetarian as ‘perhaps I was allergic to wheat or had indigestion’. 
Sadly my doctor was not familiar with #NeuroendocrineCancer as they are taught ‘if you hear hoofs to think of horses’. By chance a locum doctor saw me one day who thought outside the box and decided that those hoofs could be a ‘zebra’ and had me sent for an ultrasound, which led to a scan and finally a biopsy and that confirmed everything.
I have now had two major operations, firstly to remove my primary tumour from my small bowel along with a heap of lymph nodes and secondly, a liver resection following a Gallium 68 PET scan on 23-November 2016. Looks as though I have small residual disease left on one lymph node which will continue to be monitored.
I also take lanreotide (a large injection) once a month to make me feel well. Sounds very scary but as time has gone on and I’ve found out a bit more I have started to get my head around what is happening and with the support of my NET Specialist Nurse and #RoyalFreeHospital NET Cancer Unit I am finally starting to feel okay again. I embrace life and have the most wonderful family and friends and continue to do all the things I did before. Thank you for reading my story and I hope it raises much needed awareness x