Around 1 in 5 people diagnosed with cancer in the UK take part in a clinical trial.
A study looking at the experiences of people affected by cancer of unknown primary
This study was done to find out about the experiences of patients, family members and health professionals affected by cancer of unknown primary (CUP or UPC).
Cancer of unknown primary means that you have cancer, but your doctor is not sure where in the body it started.
Having an unknown primary cancer can be distressing because when you are diagnosed, the cancer has already spread. Doctors usually treat cancer according to where in the body it starts. So it’s difficult for doctors to know which treatment will work best for cancer of unknown primary.
When this study was done there hadn’t been much research looking at peoples’ experiences of living with an unknown primary cancer, or about the best way to care for or support them. Researchers doing this study talked to patients, and to their family members and health professionals to find out more about living with and treating cancer of unknown primary.
The aim of this study was to learn about people’s experiences, and hopefully improve care for people with cancer of unknown primary.
Summary of results
The research team found that people found it difficult when they were diagnosed with cancer of unknown primary, and that care could be improved.
This study recruited
- 17 patients
- 14 family members
- 13 health care professionals
The research team interviewed everyone taking part. They asked the patients and family about things such as
- What they understood by the term cancer of unknown primary
- How they felt about having cancer of unknown primary
- What their main concerns and needs were
As well as those sorts of questions, they also asked the health care professionals whether they were familiar with treatment guidelines, and what experience they had of caring for people with cancer of unknown primary.
The research team found there were 2 main themes in the answers.
The first issue was uncertainty. Many people had not heard of cancer of unknown primary and were frustrated by the lack of information about it. Some people found that their health care professionals couldn’t agree on the best treatment option, and this made them more anxious.
Another concern was that they did not know whether there was any risk to other members of the family. There was a possibility that their cancer had been caused by an inherited genetic change (mutation), but no one could say for sure.
The second issue was continuity. Health care professionals often disagreed on who was the best person to care for each patient. This can mean that patients get referred from one team to another, and sometimes feel caught in the middle. It also means that they lose contact with specialist nurses when they move to the care of another team, and this can make it more difficult for patients and their families to cope.
The research team concluded that people with cancer of unknown primary have similar issues to other cancer patients, but to a much greater extent. They recommend that more should be done to make sure patients don’t move from one medical team to another as often, to try and reduce anxiety.
We have based this summary on information from the team who ran the trial. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Professor Alison Richardson
Dimbleby Cancer Care
Isle of Wight NHS Trust
NIHR Clinical Research Network: Cancer
Portsmouth Hospitals NHS Trust
University Hospital Southampton NHS Foundation Trust
University of Southampton