Research Involvement Network opportunity: Take part in a focus group to discuss how people that have received surgery for pancreatic cancer should be looked after and monitored.
On Thursday 24th November at 17.30, Professor Hemant Kocher will be running a focus group designed to help with the development of his surveillance/monitoring study. Participants will be asked to share the experience of themselves or their loved one who underwent surgery for pancreatic cancer and discuss the care and monitoring they received post-surgery and how this could have been improved. Professor Kocher will use the information collected at the focus group to shape the work that will be carried out in his proposed study (more info below).
About the study
There is no nationally/ internationally agreed plan on how to look after people who have had part or all of their pancreas removed for cancer. People with other cancers, for example breast cancer, have a dedicated plan to see them in hospital/clinics with specific tests for up to at least five years after surgical removal of their tumour.
This anomaly is perplexing because pancreas cancer surgery is the most complex of all cancer surgeries, and in fact, we know that cancer comes back in some form or another within 24 months after surgical removal in 70% of people. If this re-occurrence of cancer is diagnosed when people get problems (symptoms) than the cancer is usually bigger, and the person weaker. This makes further life-prolonging treatments difficult to tolerate, and ineffective.
The aim of this project is to recruit people who are due to undergo surgery for suspected or proven pancreatic cancer before surgery takes place. Then they will be asked specific questions and appropriate samples collected for analysis. Once patients have had their surgery, they will be followed up in hospitals/clinics with dedicated scans and blood tests and access to doctors and nurses at timely intervals for two years.
The team also plan to develop a software (phone application or ‘app’) to allow people to detail how they feel every week after surgery in terms of their problems (symptoms) as well as their physical activity, food habits, and mental health. They hope that analysing this information will help them develop a dedicated plan for future patients and an ‘app’ will allow lesser hospital visits and timely attention without excess burden on healthcare services.
They also hope that by testing the tumour and other samples (blood, urine) in laboratories as well as using scans, they will be able to identify opportunities for new treatments. These new treatments may be available as clinical trials within this study, for at least some of the participants.
About the involvement opportunity
Participants are invited to attend a focus group on 24th November from 17.30 – 19.30. The focus group will be held online via Zoom and a link to join will be provided. The session will involve a combination of open discussions where participants will be asked to share their experiences and thoughts on how it could have been improved, as well as answering the research teams questions around prioritisation.
Who can take part?
This opportunity is open to:
- Patients that have received surgery for pancreatic cancer
- Carers and loved ones of patients that have received surgery for pancreatic cancer
If you would like to join the focus group, please get in touch with the Pancreatic Cancer UK Research Team (firstname.lastname@example.org) quoting the involvement reference ‘Post-surgery focus group’. Someone from the Research Team will then be in touch.