Navigating the Unknown: Rare Cancer Patients Confront Pervasive Illness Uncertainty

A rare cancer diagnosis places patients on a journey few clinicians have mapped. For the roughly twelve percent of Australians diagnosed each year with a cancer classified as rare—defined as fewer than six cases per 100,000 people annually—the experience is often defined not by treatment protocols but by an unrelenting fog of uncertainty. New research published in Supportive Care in Cancer offers one of the first systematic explorations of how people living with rare cancers experience and manage this uncertainty, and the findings reveal a psychological landscape as complex as the diseases themselves.

The study, led by Tamsin Farrugia and colleagues at La Trobe University in collaboration with Rare Cancers Australia, took a distinctive analytical approach. Rather than conducting new interviews, the researchers performed a secondary analysis of existing qualitative data from twenty rare cancer survivors interviewed between November 2023 and February 2024. The interviews, originally designed to explore information provision preferences, contained rich and spontaneous accounts of illness uncertainty that the research team recognized deserved focused attention in their own right.

To structure their analysis, the researchers applied Mishel’s reconceptualized uncertainty in illness theory, a well-established framework in nursing science that describes how patients make sense of illness-related events. The theory identifies sources of uncertainty—called the stimuli frame—including symptom patterns, event familiarity, and event congruence, the alignment between what patients expect and what they actually experience. It also describes how cognitive capacity and external influences called structure providers, such as credible authority figures and social support, shape whether uncertainty is appraised as danger or opportunity.

The participants, six males and fourteen females aged between 26 and 72 years, represented eight different rare cancer types, with sarcoma being the most frequently reported diagnosis followed by thymic gland cancer. Most resided in metropolitan areas, and interviews lasted between 23 minutes and 1 hour and 31 minutes, with a mean duration of 51 minutes. Maximum variation sampling ensured diversity across age, gender, location of residence, employment, and cancer type.

The analysis revealed that ambiguity and the receipt of inconsistent or insufficient information were the most prominent forms of uncertainty experienced by participants. This ambiguity was particularly acute during diagnostic investigations, where inconclusive test results left patients in a prolonged state of not knowing. One participant, a 33-year-old woman, described the experience: “So, there was a period of time of not really knowing what was going on, or what was involved. And a lot of waiting. When you go on you get referred to someone, you sit there and you know that there’s something wrong. But you don’t know what it is, and no one can answer your question.”

Beyond ambiguity, uncertainty also took the form of complexity, as treatment options for rare cancers were often scarce or specialists with relevant experience difficult to find. Participants worried that their current treatments could lose effectiveness or become unavailable altogether. One 32-year-old woman articulated this fear directly: “How long am I going to be able to access my current treatment for? If there’s not enough people that are taking the treatment, there’s no reason for them to keep making it even if there is a few of us there. There is a high chance that they will just stop, stop manufacture.”

Event unfamiliarity emerged as the primary source of uncertainty in the stimuli frame. Participants described navigating lengthy, unfamiliar diagnostic processes and, after diagnosis, being forced to move through hospital systems and multiple specialists without a clear sense of direction. Event incongruence—when treatment or recovery experiences did not match expectations—also amplified uncertainty. One participant described taking a medication expecting a normal life, only to be bedridden fifteen minutes after the first dose, having received no adequate information about possible side effects.

Among the structure providers identified in Mishel’s framework, credible authority—specifically communication with healthcare providers—consistently exerted the greatest influence on participants’ experience of uncertainty. When providers possessed the expertise to manage rare cancers and communicated honestly about the limits of their knowledge, patients reported reduced uncertainty. Trust became the critical variable. As one 35-year-old male participant explained: “Let’s be real like you can only trust your oncologists. Your oncologist is the person that you see, that’s the number one specialist that you go to before you start treatment anyway. You go to them to find out what the plan is, they’re the expert in all of this… But you’re trusting them in their decisions. And you’re just hoping for the best.”

Social support played a distinct but equally important role, though primarily after treatment completion. Many participants found it difficult to talk to family and friends who lacked understanding of their rare cancer, leaving them feeling isolated. Peer support—connecting with others diagnosed with similar cancers—provided what participants described as a sense of hope and possibility. “It’s that sense of hope that you get when you’re able to speak to somebody else that’s been living with this cancer,” said one 55-year-old woman. “It allows you to think, ‘okay, this is possible’. And that’s what you want to be able to hear. I can live with this cancer.”

Coping strategies evolved across the cancer trajectory. Information-seeking was the dominant strategy during diagnosis and early treatment, with participants turning to scientific journal articles, online sources, and social media to connect with others. This self-directed research helped participants regain a sense of control and engage collaboratively with their treating teams. Over time, many participants demonstrated adaptation through acceptance, gratitude, and a desire to support others in similar circumstances. The researchers conclude that healthcare providers can reduce uncertainty by prioritizing continuity of care and establishing themselves as trusted clinical contacts, and they call for phase-appropriate interventions that measure uncertainty at each stage of the rare cancer pathway to improve equitable supportive care.

Subject of Research: Illness uncertainty experiences and coping strategies among rare cancer survivors

Article Title: “The uncharted waters of completely not knowing what’s next”: rare cancer patients’ experiences regarding navigating uncertainty

Article References: Farrugia, T., Duijts, S. F. A., Wilson, C., Cockburn, C., Hemming, L., & Spelten, E. (2026). “The uncharted waters of completely not knowing what’s next”: rare cancer patients’ experiences regarding navigating uncertainty. Supportive Care in Cancer, 34(11), Article 1102. https://doi.org/10.1007/s00520-026-11331-4

Image Credits: AI Generated

DOI: 10.1007/s00520-026-11331-4

Keywords: rare cancer, illness uncertainty, Mishel uncertainty theory, supportive care, cancer survivors, qualitative research, healthcare communication, peer support, oncology, coping strategies, information seeking, psychosocial outcomes