I didn’t really have any symptoms as such, I just had a slight change in bowel habits; they were getting more frequent and looser, and I ignored it for a while.
So I went to my GP and he thought perhaps it was gallstones. He didn’t say ‘Oh, it could be this’ or ‘it could be that’, he said ‘it could well be gallstones’, so he referred me for an ultrasound scan.
I had the scan and I said ‘Oh, it was probably just stress’ or something, and the sonographer said ‘Right, okay.’ At the end of the scan, he turned the screen towards me and said ‘This is your liver’ and on the screen was what looked like a liver with little cigarette burns all over it.
Now I don’t know if it’s normal for a liver to look like that, but from what he was suggesting, I guessed it wasn’t, and he then said ‘I’m going to refer you for a CT scan’, and I didn’t know it at the time, but I was then put on a two week cancer pathway, so the CT scan came very quickly – within two weeks – and then I got the results of the CT scan.
I went to see the consultant at my local hospital. When I went in, I had some family with me. I was introduced to somebody who was the McMillan nurse, and I thought ‘Okay’, and he just said ‘I’m really sorry, you have cancer’, which I sort of had worked out in a way, that there was something not quite right, and I took a deep breath and we talked about things, and he said ‘But, what we don’t know is where it’s come from, so we need to do some more tests to know where it has come from.’ I said ‘Okay, fair enough’ you know. ‘Let’s get on with it.’
So I had my gastroscopy and my colonoscopy and you get the results on the same day. I sat down with the nurse, and she went through the notes and said ‘It’s all clear,’ and I was puzzled. I said ‘Sorry?’ and she checked through the colonoscopy again, and she said ‘All clear, nothing abnormal in there.’
She also checked the one for the gastroscopy which looks into the stomach, and that was all clear.
She said they’d taken a test for H. pylori, which is a bacteria, but everything was clear, and I really couldn’t understand that then because I had been told I’ve got cancer, that it’s in my liver.
So after I’d had my gastroscopy and colonoscopy and I’d had clear results from there, I went back to see the consultant and he said ‘What do you think?’ I said ‘Well, I’m just really puzzled’, and he said ‘Yes, the only thing we can do now is to do a liver biopsy’.
When I went to the consultant for the results of my liver biopsy, he was then able to tell me that it was what they call a neuroendocrine tumour and it was well differentiated, he told me at the time, but he couldn’t deal with it at the local hospital, so he referred me to a specialist centre, and by August I was being seen by a specialist in NETs.
My diagnosis is that I have an unknown primary, but it’s probably somewhere in my abdomen because I have tumours in my mesenteries and in my liver.
What they did tell me, is that because of the degree of spread, I had probably had it for between five or ten years before diagnosis, and I had had no symptoms at all, which was quite shocking to think really; just that one slight change in my bowel habits.
It was a very quick journey really to being told you have cancer, and then you have this rare type of cancer, and it’s quite amazing. Quite a few tears along the way, but then lots of positivity as well.
Information about the emotional, physical and social challenges of living with NETs
Patient support groups for NETs can often provide social and emotional support
Learn about carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETs