I was diagnosed with cancer when I was 53 years old but I had been ill with non-specific symptoms for a long time and felt like I was constantly in and out of the doctors. I travelled a lot for work and the symptoms were making it increasingly difficult to my job to the best of my abilities as it was having a major impact on my reliability. I had been experiencing stomach problems on and off for a good few years; I was in pain a lot of the time, fatigued, and catching everything that was going around, but no one seemed to be able to join the dots.
As I had medical insurance through work I decided to use it to get things moving. In 2007 I had had adhesion surgery and because I was experiencing similar symptoms after discussion with my consultant it was agreed that repeating the surgery was the best option, so this was done in May 2014. The consultant said the adhesions hadn’t come back but new ones had appeared and it looked like there may have been an infection in my bowels. I didn’t recover as well from the surgery as I had done first time round I, was having night sweats and my stomach continued to bloat and cramp causing me to need the toilet far too often, at times the pain was unbearable, nothing seemed to touch it, as such I ended up in A&E a couple of times. I’d had a hysterectomy when I was 31 and had gone through early menopause in my mid 30’s so knew these symptoms couldn’t be attributed to that, and thought if I heard IBS one more time I would start screaming and not stop.
I was advised to try an exclusion diet, but apart from confirming an intolerance to wheat it didn’t make any difference. I was then referred to a gastroenterologist who requested a number of scans including a nuclear scan, CT scan, MRI and ultrasound which confirmed further investigation were required. So from there I was then referred onto the endocrinologist who said there was a suspicious lump in my small intestine. Lots of tests were done, but they proved inconclusive and it was agreed once again that they would take a look and try to take it out. During the operation the surgeon wasn’t able to remove the tumour, but noticed some suspicious nodes on my liver so took a biopsy.
A week after surgery and six weeks before my first grandchild was born; I was told that I had metastatic neuroendocrine cancer and that I had probably been living with it for 7 to 10 years, and that once it had taken up residence in my liver was when it decided to make itself known. In that moment my life was tipped upside down, it was a lot to take in, nobody wants to hear that. I was worried about how best to tell my family and friends and it took me a long time to get my head round the diagnosis.
My oncologist admitted that they didn’t know a lot about neuroendocrine cancer but explained that it doesn’t go through the same pathway as more common cancers but spreads through the endocrine system. So I was referred onto the Christie Cancer Hospital in Manchester, which is also a Neuroendocrine centre of Excellence. The primary neuroendocrine tumour is in my small intestine within the mesentery layer, it is also in my liver, on the peritoneal wall, and in various lymph nodes including one on my aorta. As a result surgery is not really an option unless there is no choice, I am classed as a watch and wait, not an easy thing to live with at times…