Exceptional Cancer Trajectories Research

Cancer survival is increasingly common and some people live beyond a cancer diagnosis for longer than expected. We have given this longer survival the term – exceptional cancer trajectories – which is the title of our research.

Our research explores how survivors, their companions, supporters, and their health and medical carers represent, understand and negotiate cancer survivorship. There are very many intersecting and intertwining issues that we have found from the stories and descriptions that people have provided us. We have a very bold goal in this research, which is that by delving into the complexity of the extraordinary we open the prospect of turning the exceptional into the normal. That exceptional survival today will be the norm tomorrow.

The term ‘exceptional cancer trajectories’ evades explicit definitions. We have found that our participants and their whānau have been exceptional in many and varied ways – something we are trying to capture in exploring the findings.

What we are doing

To gain an understanding of exceptional survival we talked to people who were diagnosed with cancer and they have shared with us their stories of living beyond the diagnosis when the ‘beyond’ is longer than medical expectation. Many of our 81 participants who have a cancer diagnosis were not given a good prognosis, with some given as little as three months to live.

We have had the great privilege of talking to people about their cancer journey and their pathways through health services, and for some, their alternative approaches to cancer treatment. Between 2020 and 2022 we talked with 81 different people, 45 women and 36 men, whose ages ranged from 19 to 97 years; 23 identified as Māori and the rest as non-Māori. About half were interviewed in person, but because of COVID restrictions, the rest were interviewed by video-links or phone.

These exceptional survivors had mostly received diagnoses of brain, lung, breast, or pancreatic cancer, with some diagnosed with other forms, including mesothelioma, melanoma, and bowel cancer. When we spoke with them they had been living with a diagnosis of cancer from 4 to 37 years. We were interested in what had led up to their diagnosis, what treatments occurred, what part they played in decisions about treatment, and what approaches they took to deal with their cancer, as well as in who helped in the process, what helped in their trajectory, and what they would say to someone who was given a cancer diagnosis.

From a selection of these 81 participants we talked to 25 people who they identified as important supporters in their cancer journey. These support people could be family, friends or health professionals. We did this so that we could gain the perspectives of those close to the person and discover how they were involved, how they helped, and what understandings they had about the way their friend, relative or patient has continued to live, sometimes beyond clinical expectations.