Opinions expressed in the videos are purely individual, personal opinions of the patient, and by no means constitute treatment advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
My lifestyle before I was diagnosed with my NET I considered myself to be a middle-aged man who is getting himself quite fit and in good shape. So, the journey itself was a bit of a crescendo for me.
When my initial symptoms occurred, I presumed it was something wrong with my stomach. I was having these terrible bowel problems and in addition to that I was then told that I was diabetic – type 2 diabetic. So, I didn’t think much of it and I was being examined by a colorectal surgeon, I just assumed that it was one of those things, as you get older it happens, and I had to get it sorted out.
I wasn’t necessarily blasé about it; I was taking it seriously. I was attending all my appointments on my own, I wasn’t involving my wife, wasn’t involving any of my family and when I went for my second opinion things changed.
I was told that there was a mass found in or around my pancreas, they weren’t quite sure what it was. A biopsy was undertaken, and the colorectal surgeon said that he would be performing an operation to fit a stent into one of the arteries, I think, that feeds the pancreas.
On the morning of that operation he came into the room – this is in September of 2015 – and said to me “You’re always on your own, is your wife able to come in?”, and I said, “Well yes she is, but this is just a routine procedure isn’t it?”, and he said “Well I’m afraid we found a lump and I think it could be cancerous”.
He wasn’t quite sure of the extent of it yet but said I’d be referred through to an oncologist and that really was the crescendo, a very quick crescendo, in the whole process.
“It felt as if basically I was being lifted up by my ankles and being shaken around hanging upside down. You hear the words ‘it’s cancer’ and you really don’t know where you’re going next.”
He then referred me on to an oncologist at The Christie hospital in Manchester and the aim was to confirm precisely what this cancer was. I was then introduced to ‘neuroendocrine tumour’, waited for all these scans to happen and for the sort of follow-up meeting with the oncologist when he could digest all of the scans and tell me what it was. It was a very, very bleak time trying to come to terms effectively with the disease, what it is, what am I fighting, and the big question of how long have I got left?
My NET affects my lifestyle in a number of ways. I have a pancreatic neuroendocrine tumour and I’m currently receiving oral chemotherapy. It’s a six-month program which I started in October. I’ve just completed my fourth cycle. Initially I thought it would really impact my lifestyle, but I’ve been very fortunate.
When you read the leaflet in the oncologist’s waiting room, it has a long list of things that could happen with chemotherapy. Fortunately, all I’ve experienced is some breathlessness towards the end of each cycle and some tiredness and irritability.
What I found in terms of my life cycle when I was initially diagnosed and told about my chemotherapy treatment, my GP told me that I might be able to manage a trip out in the car now and again. For me, hearing that was bad news, however I’m very pleased to say my oncologist, when I told him, I said “I’m really worried about this chemotherapy, I have to avoid infections, you’ve got a long list of things that could happen apart from my head falling off basically, what am I going to have to do?”, they said “Well you can just get on and do things that you want to do, you’re in control of this”, and hearing that was a great relief I’ve been able to continue going to the gym. That’s very important to me to maintain physical fitness. I’ve been out for walks, been enjoying life as I was before.
When I was first diagnosed, on a psychological basis, I found it very difficult to deal with it and to come to terms with it. As such I took the decision to step away from work because I couldn’t concentrate at work, however now I’m on the treatment I know how the cycle goes, I know what symptoms to expect, I’m in control. I’ve now gone back to work which is very good news both for me in terms of my psychological well-being but also in terms of financial well-being.
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 the different types of NETs, symptoms of NETs, their diagnosis and treatment.