Pancreatic Cancer

Follow-up appointments and tests

During treatment, such as chemotherapy, people see their hospital doctors regularly and have various investigations to assess the progress of the disease. For people in clinical trials doctors may order blood tests and CT scans more frequently. After leaving a clinical trial they may wonder why they are having fewer follow-up appointments and scans than during the trial.
After treatment has finished people usually continue to have a regular check-up with either a consultant, a registrar or a nurse. During a check-up the doctor or nurse will do a physical examination, ask about any problems and check weight. The doctor may also order a number of blood tests, a CT scan or an ultrasound scan. Follow-up appointments take place frequently at first then less often as remission continues. Most people we interviewed were having check-ups every three or six months.
There is no standard protocol in the UK for follow-up after treatment for pancreatic cancer. How often people see a doctor or nurse for a check-up, and what tests or scans they have when, varies between hospitals. What happens seems to depend on the time that has elapsed since treatment finished, whether or not the disease has spread, patient preference, and doctors’ views about the advantages and disadvantages of doing regular scans.
After Elaine had fully recovered from both surgery and radiotherapy she wanted no more check-up appointments because the doctor had told her that if the cancer recurred there was little more he could do. She did not want to worry about every little symptom. She decided to try to forget that she had had cancer and to get on with life. However, that was 15 years ago and every case is different.
Peter (Interview 36) had treatment for a neuroendocrine tumour. Unlike Elaine, he decided to have regular check-ups and regular scans to make sure he did not have a recurrence. He was a private patient.
Although some people had regular CT scans as part of their follow-up, others did not and wondered why. One man thought that he was no longer having scans because he had declined another course of chemotherapy. He thought that since he had rejected his oncologist’s advice to continue chemotherapy he was no longer eligible for expensive scans paid for by the NHS. Helen’s doctors had told her to report any symptoms, no matter how trivial. She wasn’t sure how she would recognise relevant symptoms and didn’t want to become paranoid about them. She was worried by not having regular CT scans and asked for one to gain some reassurance that all was okay. Alison thought that her doctor, whom she saw privately, had stopped regular CT scans because she found waiting for the results so incredibly stressful. When she asked her consultant about it he explained that if a scan showed that she had metastases (a secondary cancer in another part of the body) there would be little he could do to cure her, so looking for a recurrence without any symptoms might not be a good idea. However, he agreed to order a CT scan for Alison whenever she wanted one.
A surgeon we interviewed about this also explained that if a person has developed metastases in another part of the body there is no proven evidence that giving chemotherapy early is any better than waiting until the patient has developed symptoms. Thus regular scanning to identify disease spread and giving chemotherapy before symptoms develop may offer the patient no advantage and could actually reduce quality of life during that time.
Similarly, some people whose disease had spread to other parts of the body were not having regular scans because they or their doctors preferred to monitor their disease progression by how they were feeling rather than the size and position of their tumours.
Michael had regular CT scans as part of his follow-up after having a Whipple’s operation followed by chemotherapy and radiotherapy. When treatment finished he had follow-up appointments every three months and CT scans every six months. In March 2010 the oncologist told Michael the upsetting news that his latest scan showed that he had a recurrence. However, the new tumour, which had appeared in the region of the pancreas, was isolated and there were no metastases elsewhere, so Michael was considered a suitable patient for CyberKnife treatment, which he had (see ‘CyberKnife stereotactic radiotherapy and its side effects’). He is due to have a CT scan shortly, which will show if the treatment has been successful. His private health insurance paid for all treatment, follow-up appointments and scans.

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Last reviewed September 2018.
Last updated June 2013



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