Updated January 2018
Roxanne, 26, diagnosed in 2014 with malignant pancreatic neuroendocrine tumour
My pancreatic cancer journey has been a little different to usual. My family and I have a genetic condition called von Hippel Lindau disease which means we are prone to tumours and cysts on various parts of the body: brain, kidneys, eyes, adrenal glands and more, which can be malignant but are mostly benign. We attend annual screenings to check for new growths. When I was called back for an MRI after my annual ultrasound in October 2013 of my pancreas and kidneys, I didn't think too much of it. I thought that if there was anything (maybe a cyst or something), it would be some form of an operation and then back to normal.
Alarm bells started to ring when I then had a CT scan, endoscopy and an octreotide scan, but I still was not too sure what to expect. I was referred to a specialist centre and I met my soon-to-be surgeon. He explained that I had a pancreatic neuroendocrine tumour (PNET), which may or may not be cancerous. At this stage there were no signs of metastasis, and he told me he would only know while operating and post-operative study of the tumour.
I was told I would need a Whipple's procedure in the next few weeks because the PNET was on the head of my pancreas. He told me that this was major surgery and that my digestion would change due to the removal of half of my pancreas, duodenum, bile duct, gallbladder and part of my stomach. I may not feel myself for 12 months. This was a huge shock but I didn't have a great amount of time to take it all in. I like to think that the silver lining to the 3 week lead up to the operation was that I had to eat as much as possible, to put on weight prior to the operation – I have never eaten so much cake and ice cream!
The operation was around 8 hours and was a success. They did not find that it had spread beyond its original site and I was lucky enough to be in hospital for only 16 days with minimal complications. It was a very rough few weeks in hospital, however the staff were great. I returned home to recover – it was lengthy but I could feel improvements every week.
I take digestive enzyme tablets with everything I eat, as my pancreas now does not produce enough enzymes to digest food. These have become completely normal and I don't really notice taking them anymore. I enjoy pretty much everything I used to eat, which is great. I am very lucky that I did not become diabetic, which was also a risk from the operation.
A few weeks after leaving hospital, they confirmed that the tumour was malignant and that I would require 6 monthly MRI's and a yearly endoscopy to check to see if anything has returned to my liver, lymph nodes and lungs. This came as a shock to myself and my family, as we were ambitious enough to think the operation was the end of the story. However, my first post-operative 6 month MRI came back clear, and I do everything I can to keep positive for future scans.
Finding a focus
I have found accepting cancer hard. I've also found it challenging to find information on PNETs and connect with others in a similar position and age (I was 26 when diagnosed) with such a rare type of pancreatic cancer. However there has been great resources within Macmillan and Pancreatic Cancer UK. I have also found focus in charity work and have aided the re-launch of the von Hippel Lindau disease UK charity, VHL UK/Ireland, which provides information and support and raises funds for research.
I am sharing my story to provide some hope to anyone else in a similar situation, facing the questions and worries associated with a Whipple procedure or a PNET diagnosis.
I do not know what the future holds. However, I am extremely grateful to be here today and I appreciate each day more than I ever have.
Update October 2015
I ran the Perkins Great Eastern 5k on Sunday 11th October 2015, a year and a half after my Whipple procedure. It was a milestone for me and I hope to be running the half marathon next year! I hope this photo provides hope to anyone about to have/recovering from a Whipple procedure.
Update January 2018
Since the 5k run in 2015, I have completed two half marathons in 2016 and 2017, and will now be training for the London Marathon in April 2018!