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Consumer Perspective: Pancreatic Cancer

Helen is married to Geoff and has been involved in his treatment since his diagnosis in 2019.

When Geoff was diagnosed he did not have any obvious symptoms except some breathlessness. Following an ECG, his skin had a yellowish tinge and two days later he was very unwell. It was a Saturday and Geoff said, ‘I’ll see the doctor on Monday’. He had never looked so ill and I insisted he see the GP that day. The doctor ordered blood tests and an urgent CT. The scan was scheduled for Monday but the next day Geoff was so sick I called an ambulance. He had a CT scan almost immediately. When the doctor came in with the results, the nurse behind him was visibly upset and the doctor said, ‘I’m ninety-nine percent sure it’s cancer.’

We were utterly shocked and knew nothing about pancreatic cancer. Unlike breast cancer, for example, it gets little or no publicity. Within days I was advised to get all our affairs in order, cancel upcoming travel plans and that the coming Christmas may be his last. Geoff was in hospital for three weeks and very unsure about having chemo. Two days before it was scheduled to commence, he was so conflicted I didn’t want to leave him but it was our granddaughter’s graduation that evening and he urged me to go. I spoke with the charge nurse and told her how worried I was. She said, ‘Go, I’ll talk to him.’ She spent a long time with him explaining the treatment and what to expect. The following day he agreed to go ahead.

I didn’t want Geoff’s prognosis to be sugar-coated, because we had to deal with the reality. His surgeon was very straight forward and honest with us. He went to great lengths to outline the whipple procedure and the risks but was cautiously optimistic, despite the cancer being 90% borderline. He was so patient in explaining everything, including the survival rates and what to expect after surgery. It took several consultations before Geoff decided to have the operation. In contrast, some other clinicians involved in Geoff’s care were less forthcoming. Questions I asked would be answered back to Geoff, as if I wasn’t there. I really needed them to be more inclusive of me – to understand I was Geoff’s primary carer. It’s true that both patient and partner go through the illness.

One of our clinicians asked Geoff at one appointment if he was doing ok psychologically. He said, ‘Yeah, I’m ok’ – typical of him. I said, ‘He may be ok, but I’m not, actually. I feel I need to talk to someone.’ They seemed a bit surprised but said they would refer us to the local home hospice. I heard nothing for three weeks so I contacted the home hospice directly and thankfully they allowed me to self-refer. It was so reassuring to have them on board, to outline the services they would provide and talk about such things as end-of-life plans. Even a phone call can be reassuring during such a stressful time and help a carer to cope with the worry and emotional turmoil.

Clinicians need to be aware some patients, especially older ones and particularly men, are reluctant to question specialists or to discuss mental health. I was incredibly lucky my daughter-in-law, who works in cancer health, acted as our advocate. She joked that the hospital staff thought, when seeing her coming down the corridor, ‘Here we go again.’ But she was amazing – talking from a knowledge base with the nurses about medication, asking pertinent questions, helping me source information and support, and stressed that I had a right to be informed about what was happening. I would have been lost without her. I believe patients really need a dedicated pancreatic cancer specialist nurse, as is the practice in some other states. They can be the first port of call between appointments. I was so lucky to have a family member to help me but not everyone has that.

There has to be an element of trust involved in pancreatic cancer treatment between patients, their carers and multidisciplinary teams. You need confidence that your loved one’s case is regularly discussed at meetings and the MDT is considering all viable options, including clinical trials. Without regular feedback you have no way of knowing that this is happening.

After three months’ chemo, the whipple procedure mid-2020, followed by another three months of chemo, Geoff was declared in remission. He gradually recovered and did well until mid-July this year, when he began to feel unwell. He saw his oncologist in early August but apart from the CA19.9 marker slowly increasing, a number of scans and a gastroscopy showed no cancer. It was not until an MRI in October that it was confirmed the cancer was back. He has elected not to have any further treatment apart from palliative pain management and is going for quality over quantity. I asked him recently if he regretted all the chemo and surgery. He gave it some thought then said, ‘No, because if I hadn’t, I wouldn’t be here now.’


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