Cancer Survivors Who Study Cancer: When Lived Experience Becomes a Research Superpower

In the rarefied world of academic research, credibility is currency. Scientists spend years building reputations, accumulating publications, and demonstrating rigorous objectivity, all in the service of being taken seriously by their peers. But what happens when the very experiences that drive a researcher into a field also threaten to undermine their standing within it? That is the uncomfortable question at the heart of a new narrative reflection published in the Journal of Cancer Survivorship, in which two Australian psycho-oncology researchers—Ursula M. Sansom-Daly and Clarissa E. Schilstra of UNSW Sydney—examine what it means to be both a cancer survivor and a cancer scientist at the same time. Their commentary, grounded in their own positionality, argues that international research policy has created a structural blind spot: frameworks increasingly celebrate lived experience as a form of expertise, yet they consistently assume that researchers and people with lived experience occupy opposite sides of a tidy binary. For a growing population of survivor-scientists, no such binary exists.

The policy landscape the authors describe has transformed rapidly. In 2016, Australia’s National Health and Medical Research Council issued its Statement on Consumer and Community Involvement in Health and Medical Research, formally endorsing the participation of patients and community members in shaping research. Seven years later, the World Health Organization published its Framework on the Meaningful Engagement of People with Lived Experience, extending that logic to a global stage. Taken together, these documents represent an exponential growth in recognition that people who have lived through illness possess knowledge that clinical training alone cannot provide. Yet, as Sansom-Daly and Schilstra point out, even funding bodies can unwittingly entrench the divide, with grant guidelines requiring applicants to apply as either a researcher or a lived experience expert—but never both. The authors describe the resulting predicament in almost existential terms: for researchers whose lived experience is simultaneously a layer in their track record of expertise and a deeply personal endeavour, there is simply no guidance on whether, or how, to weave their survivor identities into their research contributions.

The two authors arrived at this in-between territory by strikingly different routes. Sansom-Daly was diagnosed with an ependymoma, a type of brain tumour, at age 21. Just weeks after finishing cranial radiotherapy, she began her psychology Honours year. During a laboratory lunch, she shared her story—a moment she recalls as both cathartic and uncomfortable. Her professor’s response, however well-intentioned, made her shrink inward: he called her a hero, an inspiration. She remembers wondering whether her diagnosis was bad enough to warrant such admiration, noting she had not even received chemotherapy. Across her research career, she describes feeling like a survivor-by-stealth. Asked repeatedly how she came to study adolescent and young adult cancer, she would pause, deciding how far back to peel the onion. For years she offered a part-truth, attributing her career direction to her experience as a research assistant on projects concerning onco-fertility and young people’s healthcare experiences, keeping her own patient history out of the account.

Her comfort with disclosure evolved only gradually. As a student, she feared that colleagues would misread her focus on young cancer patients’ psychological needs as a personal agenda rather than a scientific one. Looking back with what she calls 2025 eyes, she can see how her story might have added power to her projects—but she is candid about the confounds. She has since completed a PhD and clinical training, published extensively, and been promoted to Associate Professor, and she acknowledges she cannot be certain how much of her recent ease in sharing stems from the privilege and protection of academic status, and how much reflects a genuine cultural shift toward respecting lived experience in 2025. A telling moment arrived recently after a research workshop, when a young adult approached her and asked whether it was true that she was a survivor. She paused, and something clicked into place. Yes, she said, it was.

Schilstra’s trajectory could hardly have been more different. Born in the United States, she was diagnosed with acute lymphoblastic leukaemia at two and a half years old and relapsed at thirteen. Treatment as a teenager shaped much of her career path. Afterward, she became a patient ambassador for the paediatric oncology department where she was treated, supporting its fundraising efforts, and discovered that sharing her story in written and spoken form exponentially increased her confidence in disclosure—she saw firsthand how her experience could produce positive outcomes for the hospital and the patients she cared about. She initially believed becoming a physician was the only way to help other young people with cancer, but treatment-related cognitive effects, including slowed processing speed and memory difficulties, caused her to fail most of her first-year mathematics and science classes. Her academic advisor told her she had little chance of passing the pre-medicine program, so she switched to psychology and found a new mentor: a clinical psychology professor specialising in childhood chronic illness who guided her through a thesis on social support and quality of life in adolescents with chronic illness, and who explicitly encouraged her to leverage her lived experiences in her research.

That mentorship changed the course of her career. In 2017, after moving to Sydney, she joined Professor Claire Wakefield’s team, where her lived experience was welcomed in her job application and actively sought as a source of insight in her research assistant role. Her PhD supervisor, Dr Joanna Fardell, and her co-supervisor, Sansom-Daly, helped her build a meaningful program of work on that foundation. She has since been invited to serve as a lived experience advisor on multiple national and international research projects, steadily building her capacity as a survivor-scientist. Where Sansom-Daly’s early experiences taught her that disclosure carried professional risk, Schilstra’s taught her the opposite: that lived experience, when actively valued by mentors, could be a gateway to research engagement and leadership rather than a liability to be concealed.

The contrast between these two narratives is not merely anecdotal. The authors situate their reflections within an established psycho-oncology literature showing that adolescent and young adult cancer survivors routinely struggle to decide if and how to disclose their survivor identities to peers, colleagues, romantic partners, and new acquaintances. Despite rising survival rates, young survivors continue to face stigma, social anxiety, negative reactions, and uncomfortable responses like the hero framing Sansom-Daly encountered. What the commentary adds is the observation that these identity negotiations are intensified within academic and healthcare settings, where questions of motivation and bias layer new complexity onto the imposter syndrome already common among early-career researchers. Would the influence of lived experience on one’s research be seen as too strong? Might it overshadow professional expertise, introduce perceived bias, and detract from scientific credibility? Without policy guidance, the authors found, the extent to which each of them disclosed was shaped less by principle than by the specific people and opportunities they happened to encounter along the way.

An intriguing generational thread runs through their analysis. With nearly a decade between them in age, the two authors bracketed a major shift in how the research community treats experiential knowledge. Sansom-Daly’s career began before most of that shift, in an era when lived experience seemed relevant only to advocacy and fundraising—she recalls observing a passionate, outspoken young survivor at a workshop and noting the visible discomfort and distancing of the researchers in the room. The lesson she drew was that identifying as a survivor in professional settings would reduce perceived credibility, and that it was safer, and more professionally advantageous, to simply identify as a researcher. Schilstra’s career, by contrast, developed largely alongside the shift, as policies and funders began calling for lived experience engagement in the design, conduct, and even leadership of research. Her advocacy experience translated directly into research opportunities, allowing her to be respected as both survivor and scientist simultaneously.

The authors see a model for change in a neighbouring field. Mental health researchers have begun generating evidence on the value of lived experience research leadership, in which complementary research and experiential expertise are equally valued. That scholarship has prompted difficult self-reflection about the fact that mental health researchers frequently lead projects about lived experience without having any direct experience themselves, and it frames lived experience leadership as a way of rebalancing epistemic disparities stemming from historical failures to fully and equitably include those with lived experience. Cancer research, the authors argue, would benefit from a similar reckoning. But one key ingredient is missing: training and guidance. They call for practical instruction in how to train individuals with lived experience to effectively, ethically, and safely leverage their experience alongside their research expertise—a need they emphasise is especially acute for early-career survivor-scientists who lack the protective shield of a PhD or professorial title.

Beyond culture change, the authors point to methodological tools already available. Embodied research methods, which involve intersectional reflexivity and explicitly acknowledge how social identities shape research interactions, have been shown to enhance research quality and inclusivity, enabling a holistic understanding of complex health phenomena for marginalised and minoritised patients. The deeper demand, however, is conceptual: policy documents and funding structures must move from a binary of researcher versus lived experience expert toward a continuum of expertise, recognising the varied ways that survivors, researchers, and dual survivor-scientists can contribute along that spectrum. The authors’ message is ultimately one of reframing. Lived experience of cancer, they argue, should never undermine the credibility of an academic cancer researcher. With better guidance and genuine cultural change, the secret can become the superpower—enriching the inclusivity, relevance, and quality of cancer research for the next generation of patients and the scientists who once were among them.

Subject of Research: Dual identity navigation among cancer survivor-scientists and the integration of lived experience expertise into cancer research

Article Title: Secret or superpower? A narrative reflection on navigating dual identities as cancer survivors and cancer scientists

Article References: Sansom-Daly, U. M., & Schilstra, C. E. (2026). Secret or superpower? A narrative reflection on navigating dual identities as cancer survivors and cancer scientists. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-026-02110-5

Image Credits: AI Generated

DOI: 10.1007/s11764-026-02110-5

Keywords: cancer survivors, lived experience, psycho-oncology, survivor-scientists, identity disclosure, adolescent and young adult cancer, research policy, mentorship, epistemic expertise, imposter syndrome, research culture, Journal of Cancer Survivorship