Login to Pancreatic Cancer UK


Posted by: Jamie 24 June 2019

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

My symptoms and diagnosis

JamieI 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

Read more about the different types of surgery

Read about what happens after surgery