All.Can Patient Survey

36 Respondents often lacked information about how to tell whether their cancer might be coming back. Another important gap frequently expressed in qualitative comments was the lack of information on how to deal with possible signs and symptoms that cancer might be recurring. This led to significant fears for respondents, not knowing whether a symptom they experienced was harmless or a cause for greater concern. What we know Studies have shown that patients’ information needs are often highest, and least well met, during the phase following active treatment. 30 An effective handover from secondary care to primary care, with regular and timely follow-up, is therefore necessary for all patients. 39 ‘I don’t think professionals really understand how much we fear recurrence.’ Respondent from the United Kingdom ‘I would like to understand better how I will be able to monitor the risk of recurrence when I am no longer receiving regular follow-up after my hormone therapy.’ Respondent from Belgium Why it matters Without appropriate follow-up after discharge, patients can feel lost or abandoned, and ill‑prepared to manage their condition, after weeks of intensive treatment and frequent interactions with their care team. 46 2 | Information, support and shared decision-making