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Carer Perspective: Pancreatic Cancer

Cherie Dear is a carer for her husband Paul, who was diagnosed with metastatic pancreatic cancer in September of 2020 and began chemotherapy.

Paul underwent life saving emergency surgery for internal bleeding in June of 2021 where most of his tumours which were causing the bleeding were removed. He had subsequent surgery to remove tumours from his liver. After seven months with a high quality of life, Paul developed pleural metastases. Cherie and Paul have four children.

I think that generally, within the health system, there is a tendency to be cautious and pessimistic rather than give patients any slight chance of optimism.

In Paul’s case, being stage four meant that he was on palliative chemotherapy only. During his treatment we were told that his tumours were stable. He wasn’t getting sicker and his tumour markers were dropping, but his scan reports only ever said that his tumours hadn’t changed much. Every time he had a scan, and you’re living for those scans, they came back with little change. His oncologist kept us motivated by reminding us that a 'stable disease is a good disease.'

When Paul was first diagnosed with metastatic cancer we were told that surgery would not be an option for us, so we put it straight out of our minds. And then along the way, I kept reading as much as I could about pancreatic cancer. I came across a surgeon in Melbourne who also conducted their own research. We met with them to discuss the research. As an aside, the surgeon indicated they had looked at Paul's scans and thought they might be able to operate in the future. We didn't really think a lot about that because [initially] we’d been told that Paul was inoperable.

Paul was in hospital after vomiting copious amounts of blood. The hospital couldn’t tell us what was causing it. I reached out to the surgeon again to get their view, and they said, ‘I've looked at the scans and I know what's causing the bleeding.’ Left long enough, it would have killed him. Whilst Paul was preparing for surgery he had another nearly catastrophic bleed, which led to emergency surgery. Subsequent histology reports indicated that he’d had almost a complete response to chemotherapy. We were shocked because scans never, ever indicated this and if they had, we may have had more hope. It makes me wonder how many other people having chemotherapy are actually getting a better response than scan reports indicate. We wouldn’t have known ourselves if Paul hadn’t had emergency surgery and the tumours were biopsied. After this, he was able to have further surgery to remove more tumours, most of which were also inactive.

We were well aware that the cancer could recur. We knew that, but because of that surgery we were given another Christmas with our children and more time. And, not just more time with a really reduced quality of life. Paul was really, really well and people were telling us they've never seen him look better. How does that happen from a stage four pancreatic cancer diagnosis? Looking fit and healthy and enjoying a really high quality of life? We’re so grateful for that surgery that we were originally told would never be possible. But, I have a real concern about what would have happened if the internal bleeding hadn't happened and I wonder how many other patients are out there in a similar situation. Perhaps getting a better response to the chemotherapy than what scans can reveal and [who] could be given the same opportunity.

We get a strong view from the medical fraternity that because it’s a stage four diagnosis, and especially for an aggressive cancer like pancreatic, there is always caution and basically an assumption that the end is near. We know that any treatment, even surgery is unlikely to be curative, but even if that is the case, patients deserve the opportunity to pursue treatment that may extend life, especially if it allows them to also enjoy improved quality of life, which is what Paul got. After his surgery his markers were within the normal range. He was able to enjoy seven months without active treatment with an extremely high quality of life. When he was first diagnosed we never envisaged a time when this might be possible.


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