Pancreatic Cancer

Finding information

Most of the people we interviewed knew little or nothing about the pancreas or about pancreatic cancer before the diagnosis. Peter (Interview 36), who turned out to have a neuroendocrine tumour, said that before he became ill he didn’t know that he had a pancreas.
Some people looked for information as soon as they developed symptoms or soon after investigations started.
Once diagnosed with pancreatic cancer, people received a range of information from their doctors. Most said that then they had plenty of information. Surgeons had spent time drawing diagrams to explain where organs were and what would happen during surgery and doctors had used language that they could understand (see ‘Communication with health professionals’). Others had had various treatment options explained. Some people were given leaflets about treatments and the possible side effects.
At the time of diagnosis most people were in a state of shock and found it hard to take in much information. Many said they did not want to know the prognosis, and more information would have been frightening. However, others felt they weren’t told enough and wanted to know more or everything about their or their relative’s illness, and some, such as Adrian, said that essential information was lacking. When Saba’s mother was diagnosed with advanced pancreatic cancer Saba and her mother knew little about the disease. Saba felt that the family were making treatment decisions without enough information.
William also found it hard to get enough information from his doctors. He told his surgeon that the pamphlets he had received before his operation had not included details about all the possible side effects. The surgeon explained that after such surgery there are hundreds of possible side effects but since they are very unlikely to occur doctors don’t usually list them all. Another time William asked what would happen if the cancer came back after chemotherapy, but his consultant was reluctant to tell him (also see ‘Communication with professionals’).
 
Some people felt they had had enough information at the time of diagnosis but later needed more. Many had looked in books or on the internet. One man said that what he found on the internet helped him to prepare for consultations with his doctors. Several had found helpful information about the Whipple’s operation they were going to have. Others searched the internet for information about new treatments. When Simon’s wife was diagnosed he spent hours on the internet looking for relevant academic papers.
Saba’s mother died of pancreatic cancer. Saba lacked information (see above) so looked up words such as ‘metastases’ and ‘gemcitabine’ on the internet. Audrey used the internet to see if others had suffered similar side effects after a Whipple’s operation, and she posted questions on a website. Someone else wanted to join an internet forum to compare notes with others who had had similar treatment. Bob found out about the enzyme Creon via the internet. He wondered why his doctor had not told him about it and he asked his doctor for a prescription to help with his digestion. Helen was convinced that the information she found helped her to get through her surgery.
Richard (Interview 22) felt that his doctors had given him superb information, but he used the internet to check that it was ‘true’. Many of his friends gave him advice about ‘super foods’ which they thought might stop the cancer growing, so he also searched the internet for information about those, but he decided that he could not alter his diet to include all the foods that might be ‘appropriate’. Vicky looked at a website run by her hospital’s liver and pancreatic unit. Websites that others found helpful were BBC Health, Macmillan Cancer Support, and Pancreatic Cancer UK. When Susan’s mother became ill Susan searched Wikipedia.
 
Some people were shocked by reading about poor survival rates on the internet, and decided not to look at the internet again. However, often their children or their friends continued to search on the internet and found various treatment options or helpful information about clinical trials. A few people looked at American websites. Some had found ‘crank doctors’ offering ‘miracle cures’ at huge prices, which they ignored or doubted.
Some people said that they had not looked at the internet at all, either because they preferred to trust the doctor, or felt no need to look elsewhere, or were unused to a computer, or worried that information on websites might be misleading, frightening or depressing. But many said that their partners or children had found information on the internet about treatment trials or new treatments such as Cyberknife (see ‘Cyberknife treatment and side effects’).
A few people used complementary or alternative therapies, particularly when medical treatments had failed (see ‘Complementary therapies, diet and other lifestyle changes’). One man told us he was eating dried apricot seeds. His wife had read about their value in a magazine. She found out via the internet where to buy them.
 
Some people got useful material from books or newspaper cuttings. Peter (Interview 43) was grateful when friends sent him articles about CyberKnife therapy.
 
Although information found in newspapers, magazines and the internet may be helpful it can also be upsetting, misleading or even harmful. Anthony’s wife had pancreatic cancer. She was diagnosed in 2003 and died peacefully in 2008. She had got upset when she read news stories about people who had died of pancreatic cancer. A TV soap opera which included a storyline about a woman who was dying of the disease had also distressed her.
 
Simon’s wife died of pancreatic cancer. Just before she died her GP gave Simon a pamphlet about what to expect when someone is close to death. Simon found this pamphlet very hard to read but was glad he had read it.

Last reviewed June 2015.

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