Picking up on the Subtler Signs of Brain Cancer

Significant headway has been made in the treatment of a variety of cancer subtypes in recent decades. But treatment can only begin after a definitive diagnosis, and a diagnosis is more likely to occur when patients are aware of a potential problem and seek help. To explore the issue of late presentation, a University of Cambridge multicenter study looked at the psychology of help-seeking behavior – leading the resulting paper with a phrase echoed by many patients: “It was nothing that you would think was anything” (1).

In short, the team were looking for new insights into an otherwise undervalued aspect of a patient’s clinical history. “We hoped to determine whether there are any missed opportunities in the clinical pathways for these patients,” says Suzanne Scott, a senior lecturer in Health Psychology at King’s College London, and one of the papers first authors. “Instead of focusing on clinical data, we were determined to ask qualitative questions from the patient perspective, to see if there was anything we could learn by looking at it from a unique angle.”

The most striking finding from the work was that, while patients and clinicians were likely to recognize hallmark symptoms of brain tumors (for example, headaches and seizures), they were often blind to more subtle changes in behavior. “Looking back, patients did notice a variety of very subtle signs early on – things like changes in their activity levels and engagement, and reduced interest in their hobbies,” says Scott. “Quite reasonably, however, they didn’t consider going to their doctor or healthcare professional about them.”

To learn more about the missing links ahead of diagnosis, Scott and her team conducted a series of workshops that brought together brain tumor survivors, their families, and their clinicians. “The doctors were very interested to learn that there was much more to disease presentation, such as changes to personality and cognition, than they’d previously thought,” says Scott, who sees this knowledge gap as an opportunity to lay the stepping stones for earlier diagnosis with a view to improved prognosis. To get there, the team plans to develop a more sophisticated checklist for changes that patients may experience as a tumor develops. “We hope to compare those who go onto to ‘develop’ a brain tumor with those who don’t, to get a better idea of the sensitivity of these symptom changes. That way, we can be more confident about which aspects are most important,” Scott says.

The work is challenging as brain tumors are fortunately relatively rare – and many of the more subtle symptoms uncovered by the team’s preliminary studies are equally uncommon – so the team must significantly expand the research. “We’d like to carry out studies in much larger cohorts,” says Scott. “We’re exploring collaborations with all the major brain tumor treatment centers, covering the breadth of the UK.”

With time, Scott is optimistic that the research could have a broad impact on public health policy, both in the UK and further afield. “There’s a significant missed opportunity here,” she says. “We’re excited to take this forward, seeing how we can improve the experience of patients and clinicians alike.”