Experiencing the diagnosis of pancreatic cancer as an acute threat: a grounded theory study on the diagnostic process of people with pancreatic adenocarcinoma

Cancer, alongside cardiovascular diseases, is one of the leading causes of death and poses enormous challenges to healthcare systems and economies worldwide (Dagenais et al. 2020; Luengo-Fernandez et al. 2013). Every year about 500,000 people in Germany are newly diagnosed with a malignancy (6 per 1000 persons; Robert Koch-Institut [RKI] & Gesellschaft der epidemiologischen Krebsregister in Deutschland e.V [GEKID] 2021). Breast or prostate, colorectal, and lung cancer cause more than half of these new cases. Except for lung cancer, all these cancer entities have a relative 5‑year survival rate well above 50%.

Several characteristics differentiate pancreatic cancer from other cancer entities. Pancreatic adenocarcinoma, which accounts for about 95% of cases, is one of the malignancies with the highest cancer-specific mortality (Deutsche Krebsgesellschaft, Deutsche Krebshilfe, AWMF [Leitlinienprogramm Onkologie] 2021). Only about 10% of those affected survive for 5 years after diagnosis (RKI und GEKID 2021). As early symptoms of pancreatic cancer are nonspecific, it is usually diagnosed late and in advanced stages (Leitlinienprogramm Onkologie, 2021; Ducreux et al. 2015; Engebretson et al. 2015; Evans et al. 2014). A potentially curative therapy—R0 resection, usually supplemented by chemotherapy—is only possible for about 15 to 20% of those affected (Leitlinienprogramm Onkologie, 2021; Ducreux et al. 2015). Five-year survival for these patients is about 20% (Ducreux et al. 2015). In advanced stages, the median survival time is between 1 and 2 years and depends mainly on tumor growth and the spread of metastases (Huang et al. 2018; Suker et al. 2016).

Knowing of the unfavorable prognosis accompanying a pancreatic cancer diagnosis may lead to significant emotional distress for many patients and their relatives (Engebretson et al. 2015; Petrin et al. 2009). After being diagnosed with pancreatic cancer, patients feel devastated, heartbroken, shocked, or scared/anxious (Engebretson et al. 2015).

For the vast majority of cancers, there have been immense advances in treatment over the last few decades (Debela et al. 2021). As a result, many formerly incurable cancers have lost their horror, at least in part. However, this does not apply to pancreatic cancer (Anderson et al. 2021). The characteristics described above, in combination with the pancreatic cancer-specific context factors—diagnosis usually at an advanced stage, rapid progression, and generally unfavorable prognosis with no hope of a cure (Ristau et al. 2021b)—set pancreatic cancer apart from other types of cancer. This results in a far under-researched and probably differing disease experience of pancreatic cancer (Petrin et al. 2009; Ristau et al. 2021b). This leads to the assumption that even already established theories about the diagnostic experience in cancer cannot be readily applied to pancreatic cancer.

A grounded theory study was conducted to gain insight into the experiences of people with pancreatic adenocarcinoma (Corbin and Strauss 2015; Strauss and Corbin 1990). The iterative data collection, data analysis, and theory development process, including special sampling techniques, characterize this research methodology. In presenting the results, we follow the Standards for Reporting Qualitative Research (SRQR; O’Brien et al. 2014) and the Consolidated Criteria for Reporting Qualitative Research (COREQ; Tong et al. 2007; see Appendices 1 and 2 in the electronic supplementary material).

This paper presents a model that illustrates the diagnostic experience of people with pancreatic cancer from a patient’s perspective. Our results show that patients experience their diagnosis of pancreatic cancer as a life-changing event and perceive the illness as an acute life threat. This is particularly important as pancreatic cancer—unlike many other cancers in the last decades—has lost none of its horrors yet. Various internal and external factors, such as prior personal knowledge, the speed of the diagnostic process or the reaction of the physicians delivering the diagnosis, could be identified as causal conditions for this central phenomenon and are a distinctive aspect of this cancer entity. These factors and the context in which the diagnosis is presented mainly influence the patient–physician relationship. This, in turn, along with other factors, affects the actions and interactions with which patients respond to their diagnosis: patients are either non-handling, or accept the diagnosis or question or reject it, which in the first case leads to a rapid start of treatment and in the second case to seeking a second opinion.

Cancer patients—and, as we have also shown, people with pancreatic cancer—never forget the day of their diagnosis (Federspiel and Schiffner-Backhaus 1999). Being diagnosed with cancer suddenly and unexpectedly confronts the person with a fundamental life crisis and, in the case of pancreatic cancer, additionally with a feeling of one’s life being threatened. It is experienced as an emotional shock. The cancer diagnosis is tantamount to a catastrophe or a “disruptive event,” as the diagnosis affects various dimensions of the patient’s life, including psychological, social, physical, and spiritual dimensions (Bury 1982; MacDonald 2001). In any case, the diagnosis seems to be unexpected. This might be one of the reasons why patients agree to a treatment comparatively quickly or—if the recommended therapy does not aim at survival—try to get a second opinion. In any case, there does not seem to be any initial acceptance of a possibly unfavorable prognosis at the time of diagnosis. The observed early acceptance of treatment or the seeking of a second opinion can be explained by the “choice, non-choice” described by Wancata et al. (Wancata et al. 2022): while “doing nothing” does not seem to be an option, patients only perceive a choice in terms of treatment options. Here, patients focus solely on the outcome, independent of multimodal therapy and its side effects. Likewise, Schildmann et al. describe that patients state to have no choice regarding their treatment decision (Schildmann et al. 2013). Against this background, shared decision-making seems challenging to conceptualize and implement, at least at the time of diagnosis. This is consistent with the findings of Ziebland et al. (2014). Moreover, if the focus is solely on a possible surgical intervention, concepts such as best supportive care or palliative care may only be applied at a delayed stage with a then possibly already impaired quality of life, where they nevertheless also have a relevant justification and are largely implemented (Griffioen et al. 2021). This lack of shared decision-making is particularly regrettable, as each therapeutic decision will have severe and lifelong consequences for the patient.

Nevertheless, healthcare professionals need to understand what people with pancreatic cancer experience in the context of their diagnosis and, on the one hand, what fears accompany this, but on the other hand, which resources patients bring with them or what external factors may be positively influenced in the patients’ interest.

We have successfully developed a model of the diagnostic experience of people with pancreatic cancer. This is characterized above all by the fact that patients experience an acute life threat through their diagnosis. Furthermore, we were able to show that they react to this threat with specific actions, making the use of shared decision-making or best supportive care strategies impossible from the very beginning. This knowledge may be used to develop targeted interventions to support patients, which could be applied during the diagnostic process. Furthermore, these results may help to understand pancreatic cancer-specific coping better along the disease trajectory. Further studies are needed to incorporate our findings into a holistic view of how pancreatic cancer is dealt with in terms of challenges and resources.