I was diagnosed with pancreatic cancer in 2013 and like most people, knew very little about the pancreas.
My symptoms had been vague at first, acid reflux and generally feeling under the weather. My doctor had prescribed Lansoprazole for acid reflux which worked well for 6 months but then I started having a feeling of been full even when I hadn’t eaten. This was quickly followed by rapid loss of weight and back pain. This wasn’t like a normal ache it was a dull constant ache which didn’t go away with over the counter painkillers. The acid re flux became worse and that was when I went back to the doctor.
I think I was very lucky to be referred with vague symptoms and very pleased that I was. First I had an endoscopy and then a CT scan. The endoscopy only showed minor scarring of the oesophagus but the CT scan showed a mass in the middle of my pancreas.
The next endoscopy was to try and get a tissue sample but was unsuccessful as my pancreas was hard and there was very little ‘wiggle room’ as it was in the main blood vessels. A PET scan followed and I was diagnosed with inoperable pancreatic cancer in September 2013. The Co-codamol I had been taking was having little effect on reducing the pain so I was put on 20ml of slow release morphine, two tablets per day morning and night. Once the pain was under control I felt better. I was also prescribed anti sickness tablets and saw the dietitian. I started taking Creon and was able to eat a bit more but was still losing weight. The only option for treatment was chemotherapy followed by radiotherapy and I started six rounds of Folfirinox chemotherapy in October. The first round was very tough with sickness and I lost 4kg. The second had to be delayed by one week due to low white blood cells and when I did have it, I suffered peripheral neuropathy and rashes. The speed of the chemo was reduced and a slightly lower dose given and I was able to continue treatment. I also started injections after each treatment to boost my white blood cells. They caused back spasms but were tolerable.
I saw a psychologist before my third treatment as I was feeling very low and didn’t want to continue if the tumour wasn’t responding. I had a three week break from chemotherapy over Christmas and had a CT scan on New Years Eve 2013. The results were very good and the tumour had reduced so I carried on with three more rounds of chemo. Thankfully, I had no problems with these apart from fatigue. Another CT scan before radiotherapy showed further shrinkage and I started 30 rounds of radiotherapy with chemo tablets at St James’ in Leeds. I had no side effects but the fatigue increased with each week and I was sleeping a lot. The treatment shrank the tumour but not away from the main blood vessels so I wasn’t able to have surgery to remove it. I was very thankful that I didn’t lose my hair. It was a bit thinner but soon grew strong after treatment finished. After treatment had finished I had a course of reflexology and attended a health and beauty day arranged by York Against Cancer. They also have a daily mini bus service taking patients to St James’ for treatment. This eased the pressure on the daily travel to Leeds greatly. It will be four years in May since my treatment finished and I have 6 monthly check ups with my oncologist and three monthly checks for diabetes which have been clear so far. I know I can contact my specialist nurse any time if I’m worried about anything and the leaflets and online information from Pancreatic Cancer Action have been a great help.