Jamie was diagnosed with a pancreatic neuroendocrine tumour in 2017. He shares his experience of having surgery to remove his tumour.

24 June 2019

My symptoms and diagnosis

I was diagnosed with a pancreatic neuroendocrine tumour on 30th November 2017.

I had previously attended A&E back in October 2017 with suspected gallstones and abdominal and lower back pain. I had further tests at A&E and had a CT scan which showed my pancreatic duct was dilated. It was purely by fate it was discovered, and also importantly that it was discovered early.

I had an appointment to see a specialist a couple of weeks later. I was told that there were small masses around the neck and central pancreas, and that they were going to take it down the cancer route.

Up until I was diagnosed in November I didn’t ever think it would be cancer, even with all the scans and visits to the hospital I still denied it. I was 43 with a very healthy job, went to the gym 5 times a week, never drank, smoked or did drugs – why should I have cancer?

Having surgery

I was admitted to a specialist hospital on 5th February 2018 for a Whipple’s or pancreatectomy, which they would decide once I was in surgery and they could have a better look. They decided on an open central pancreatectomy.

I was due to stay in for 7-12 days, but ended up being admitted for 4 weeks due to a few side effects and set-backs. I had to go back again for surgery to have another drain fitted as I developed a large build-up of fluid in my abdomen. I also developed bilateral pulmonary embolisms which affected my breathing and spiked fevers.

After surgery I didn’t require any chemo or radiotherapy. I was finally sent home with a bag full of meds and a drain in situ.

Recovery and looking to the future

I needed a lot of care and support from my family at home and wouldn’t have managed without them. My appetite soon returned though and I use Creon with all my meals. I was in pain from surgery and hardly mobile, but more importantly I was cancer free.

A year on and I’m making progress. I still take Xarelto for blood clots. I still have pain around my abdomen, which increases the longer I stand or walk for. I use a walking stick for short walks or rely on a wheelchair for longer days out. I rely on insulin with meals, so I do 4 insulin injections a day and do regular sugar level checks. I have regular meetings at hospital for the Pain Clinic, physiotherapy and anxiety. I so far have been unable to return to work but still have a good quality life.

I cannot praise all the staff enough at the hospital, they really are out of this world.

June 2019