The significance of uncertainty for people diagnosed with Cancer of Unknown Primary (CUP) and their family caregivers

Cancer of Unknown Primary (CUP) is diagnosed when a patient presents with cancer that has already spread but the primary site cannot be identified. In the UK, around 8,000 people per year are diagnosed with CUP, making it the 15th most common cancer and the 6th leading cause of cancer death [1]. Prognoses are generally poor, with median survival rates of 3-11 months, in part because of the later stage diagnosis but also because, without knowing the primary cancer site, targeted treatment options and care pathways are difficult to determine [1,2]. People diagnosed with CUP thus often experience high levels of uncertainty around their treatment, outcomes and care [3], and they commonly report lack of clarity in the communications they receive from health professionals [4]. In many cases, patients are “bounced” between specialist care teams, which can create discontinuities between communication, advice and recommendations [3,5]. Despite the publication in 2010 of NICE guidelines [2] for diagnosing and managing CUP, uncertainty is still reported by patients as a driver of increased distress and anxiety during a time of crisis already marked by pain and suffering [5].
 
This project aims to explore experiences of uncertainty in CUP through a linguistic analysis of posts to an online forum for those diagnosed with CUP and their family caregivers. The forum (containing approximately 110,000 words of posts) was hosted by the charity, Cancer of Unknown Primary (CUP) Foundation – Jo’s Friends [6], from 2007 – 2012 and they have since made all posts publicly accessible. The charity has given permission for this research project to go ahead and for extracts to be published in anonymous form.

In language, uncertainty is expressed through the modal system, that is, through formal grammar categories (such as modal verbs like ‘might’, ‘could’ or hypotheticals like ‘if… then’) and lexical items (such as mental processes like ‘don’t know’, ‘don’t think’). By studying the linguistic patterns of modality in people’s accounts of CUP, we will thus be afforded insights into the ways in which uncertainty is given meaning as a significant element of CUP experiences. Moreover, by looking at how the linguistic markers of modality are embedded within longer stretches of discourse or narratives, we will be able to see how uncertainty is navigated within the varied contexts of people’s lives. This is especially important for CUP, where diagnosis rates in the UK are highest amongst women from disadvantaged backgrounds [1].

The specific research questions are:

• How do the accounts of people with CUP and their family caregivers use linguistic markers of uncertainty (such as modals verbs, hypotheticals and negative mental processes) to construct their experiences of CUP? Which elements of their experiences in addition to lack of an identified primary site (e.g. treatment, communications, care options) does uncertainty play a key role in?

• How is uncertainty itself constructed as a significant feature of the experiences of CUP? (e.g. in comments about uncertainty, such as “the uncertainty around my diagnosis is difficult to deal with”).

• How is uncertainty navigated and given meaning within the social contexts that people with CUP and their families are living in?

The research will add to the limited number of qualitative explorations of subjective experiences of CUP and will shed light on how patients could be supported to manage the uncertainty inherent within the diagnosis. The study will also contribute to the growing bank of health communication studies using detailed linguistic analysis of firsthand accounts to provide greater understanding of personal experiences of illness and how they are embedded within everyday, social contexts.