Anne T

Anne’s husband David was diagnosed with a pancreatic tumour 8 years ago. She shares their experience to help others.

Anne T
8 January 2021

My husband David had an Intraductal papillary mucinous neoplasm (IPMN). This started off as benign cyst, but became cancerous. It was not diagnosed until his duct was blocked and he had jaundice.

Diagnosis and treatment plan

David’s symptoms over 2 years included severe fatigue, breathlessness, sweating, back pain and finally jaundice. He saw several consultants over this time but they looked mainly at heart and lungs.

When he became jaundiced we presented at our local Accident and Emergency (A&E). David was admitted and a scan revealed a cyst on his pancreas. We were told it was easy to remove his pancreas and use Creon (digestive enzymes) to help his digestion instead. We were pleasantly surprised by this as David’s mother had died of pancreatic cancer and that treatment was not available. We thought that treatment had moved on.

David was then referred to the specialist hospital for further treatment. He had a stent fitted to alleviate the jaundice. Unfortunately this tended to block and the blockage led to a persistent infection. A second stent was inserted at a local hospital but just provided very temporary relief before blocking again.

A Whipple’s procedure was planned and we realised we were misled regarding the simplicity of the operation. A biopsy revealed that there was a malignant (cancerous) section of the cyst, due to no diagnosis being made earlier. Luckily there was a trial taking place using a PET/CT scan before the operation. The path to getting that was fraught, but we managed in the end to access the scan. It showed a spread to David’s lung. Although this meant a cancellation of the Whipple’s operation, we were glad he had been spared the trauma of this if it was not to have been a cure. The PET scan is now supposed to be part of the process of diagnosis, so far as I am aware – I would insist on this.

The National Institute for Health and Care Excellence (NICE) have produced guidelines on diagnosing and managing pancreatic cancer. This may help you understand the care you should have. Read the full guidelines on diagnosing pancreatic cancer.

David’s care

David’s diagnosis and care took place in 2012, and the chemotherapy he was offered was described as producing a slight improvement in symptoms. David was poorly by this time and we did not think it worthwhile to travel for this or subject ourselves to any more additional stress. I think his persistent infection would also have prevented it. He was taken into hospital by ambulance suffering from sepsis two hours after he saw an oncologist, who hadn’t picked this up despite David feeling unwell.

David had found his experience and care at the specialist hospital to be very stressful so refused to return there, there was a shortage of cups, food and blankets. His ongoing care took place at our local hospital and was so much better and provided excellent nursing care. It is possible to change hospitals for basic care.

Taking pancreatic enzymes

David took Creon to help with digesting food, but these were misprescribed in the hospital and in the local hospice. They were issued on the drug round but they need to be taken with food. The manufacturer confirmed this lack of understanding was often the case. Since these make a big difference to people with pancreatic cancer it is important for people to know when to take them.

Pancreatic cancer can mean that food is not properly digested. This can be managed with pancreatic enzyme replacement therapy (PERT). Read information on PERT and how they should be taken.

The emotional impact of pancreatic cancer

David died 5 months after his initial diagnosis.

Both David and I found dealing with pancreatic cancer very difficult. We were both strong capable people, but were worn down by the system. His basic care was very poor initially until he transferred to the local hospital. The diagnosis was difficult enough but there was a lot of unnecessary stress which seriously affected the mental health of both of us. We did not access the help from Pancreatic Cancer UK as were not aware of it, I am sure it would have helped to be able to talk to a knowledgeable and compassionate nurse. I have noticed with other people close to me going through cancer treatment that it can make such a difference to have someone to talk to about the situation.

December 2020