I work in a health service and as I have since discovered, I am an assertive patient, but it still took nearly a year to convince people I was unwell.
I had major surgery, which involved not only the removal of a section of the pancreas and stomach but also the gall bladder and some of the duodenum. This was followed by six months of chemotherapy.
My cancer was diagnosed at an earlier stage than many others, and I managed to maintain good general health for some time.
Early last year, however, scans revealed the cancer had spread to my liver. After some treatment, I was retested in September and the scan showed that a lymph node had also been affected. So I have been having a new regime of chemotherapy since mid-October.
While my story differs from my mother’s in some aspects, one thing has stayed the same – the very poor prognosis for people with pancreatic cancer. The five-year survival rate is still only at 5%. Nearly as many people die with pancreatic cancer now as they did in 1982. But no one wants to talk about it.
There is still little awareness of pancreatic cancer in the community and few specific supports available compared to some other cancers. The average person probably doesn’t even know where their pancreas is, or what it does.
Pancreatic cancer needs an image change. I think it is very different to breast cancer, for example, where people are more easily diagnosed and there is a well-publicised, common understanding of the disease. But in Australia nearly as many people die from pancreatic cancer as they do from breast cancer.
My experience is, if I say I have cancer, people just assume I have breast cancer because their understanding of cancer is minimal – it’s not one disease and each cancer has different kind of issues.
Pancreatic cancer is nasty because, a little like ovarian cancer, the symptoms can be vague and people are often not diagnosed until it’s well advanced. A greater understanding of the disease may lead to earlier diagnoses, which may improve the outcome for those diagnosed.
At this stage, if my body stops responding to the current treatment, I may have to move on to one called Abraxane. It’s listed on the PBS for breast cancer patients but not for pancreatic cancer patients, making it very expensive for me.
I’m highlighting this not because I want people with breast cancer to get less support but I would like there to be increased awareness of pancreatic cancer and for those who have been diagnosed to receive more support than is currently available.
This lack of awareness of the disease compounded the isolation I felt when I was first diagnosed.
I have since found support online with people from all over the world. I have email buddies both locally and overseas and we provide each other mutual support. Nothing beats talking to someone who truly understands.
A common theme, aside from the financial stress, is the challenge of enjoying the days we have while we are well and somehow dealing with the constant anxiety and fear of a reoccurrence.
I am very aware it is hard for carers, family and friends to watch someone they care about, feeling helpless and knowing that what we currently know about cancer is not enough.
My brothers and I have joined the familial research project being conducted at the Garvan Institute to support the search for a greater understanding of pancreatic cancer. We are hopeful that with the right support, research may find methods for early detection and improved treatment so that future generations are not in this same situation.
I object strongly to some of the language used around cancer, and the constant references to war terminology. Not everyone wants to ‘fight’ and that is ok. I can’t stand that the press regularly refers to people “losing their battle with cancer”. If I fell off a cliff, would you say I lost my battle with gravity?
I prefer to think that I am living a rich and rewarding life and cancer is part of it. I intend to keep living that way for as long as I can. I am not planning to die as a ‘loser’. I want to leave something positive for the next generation.
I’m in the unusual position now where I watched my mother with pancreatic cancer, and now I’m seeing my daughters watch me – that’s a pretty powerful thing. They’re all intelligent women, they know the facts, and they are following my direction.
By advocating for change, I feel like I am contributing to finding better outcomes for others including my four daughters and my grandchildren. I certainly don’t want them to be lining up for this disease.
From gene sequencing technology to immunotherapy, Insight explores the big game changers in understanding and treating cancer.
Erica is a guest on tonight’s episode of Insight at 8.30pm on SBS ONE, which explores cancer breakthroughs. Patients and families benefitting from new cancer treatments speak, and medical experts explore coming developments. The program also asks why we have made significant progress in treating some cancers, but little to none with others. #InsightSBS
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