• A new targeted literature review finds the fear of recurrence a major unmet need in breast cancer survivorship, often found to affect at least two in five survivors^1,2,3,4,5 across Asia Pacific and the Middle East
• Survivors describe feeling “trapped in uncertainty⁶” and abandoned post-treatment
• Experts call for fear of recurrence to be recognised as core to the survivorship care plan, normalising conversations around risk of recurrence and scaling support for survivors 

Women across Asia Pacific and the Middle East are living for longer after being diagnosed with early breast cancer, but many still face the fear of the cancer returning, with around one in six experiencing a recurrence within five years after treatment⁷. A new targeted regional literature review highlights fear of cancer recurrence (FCR) as one of the most prevalent and under-recognised challenges for those who survive cancer, reinforcing calls for it to be addressed as a core part of survivorship care through routine screening for fear of recurrence and availability of culturally tailored support.

Commissioned by Novartis, the targeted literature review consolidates evidence on the psychological, social and informational dimensions of survivorship across eight countries – Australia, South Korea, Taiwan, India, Malaysia, Saudi Arabia, the United Arab Emirates and Singapore. It found that at least two in five across Asia Pacific and the Middle East experience clinically significant FCR^1,2,3,4,5, with up to 90 per cent in India suffering low-to-high levels of FCR⁸. The analysis also found that most countries lack structured survivorship services to help survivors manage FCR. 

Speaking about her own experience, Bina Mathews, breast cancer survivor, Executive Master Coach and motivational speaker, shared: “When treatment ends, a whole new journey is just beginning. For me, navigating life after cancer meant every follow-up scan or unfamiliar ache would bring back the worry. For a long time, I avoided speaking about the topic of recurrence because it would raise those fears and felt like tempting fate.”

Survivors’ fears are shaped by their experiences. Predicators that vary across countries include younger age at diagnosis⁹, physical symptoms, and psychological distress, while sociodemographic factors such as education level also have the potential to influence risk. Across many cultures, fear is often suppressed by social stigma and norms that discourage open discussion^9,10,11,12.

Many survivors describe feeling “trapped in uncertainty⁶” and abandoned post-treatment. While some find strength through acceptance, faith or peer support, others turn to avoidant behaviours such as denial or self-blame, which are independently linked to higher FCR⁹. Survivors reported drawing informational and emotional support from community and peer networks, yet few FCR-focused structured programmes exist, leaving most women to navigate fear largely on their own.

“For many survivors, fear of recurrence can overshadow life after breast cancer, yet it rarely gets the attention it deserves. By ensuring fear of recurrence is part of routine survivorship conversations, women can be supported emotionally while also being informed about the treatments and strategies that may help them reduce their risk of recurrence and live well beyond cancer,” said Kara Magsanoc-Alikpala, a global cancer patient advocate and Chairperson of the World Health Organization Breast Cancer Initiative Technical Working Group Advocacy Committee.

Beyond individual experiences, the review identified common gaps across the region. Nearly half of survivors in Taiwan reported lacking up-to-date information on treatment or general information on the risk of recurrence, while 22 per cent cited poor physician communication and follow-up¹¹. Stigma and isolation were common, with one Australian study finding that all survivors surveyed had experienced stigma, and up to 45 per cent of South Korean survivors reported avoiding social contact due to stigma^13,14. Concerns about recurrence and disease progression are often insufficiently acknowledged or addressed by healthcare professionals, and access to psychological support remains limited or absent¹⁰. These gaps leave survivors vulnerable at the very stage when they most need reassurance and continuity of care.

“Fear of cancer recurrence is one of the most common and distressing concerns faced by breast cancer survivors, yet it remains under-recognised and under-addressed across health systems,” said Associate Professor Ben Smith, Cancer Institute New South Wales Fellow, and Senior Implementation Scientist at the Daffodil Centre, University of Sydney. “We need to acknowledge fear of recurrence as a core aspect of survivorship care, make it routine to screen and assess how much fear is affecting daily life, and ensure tailored care is available to address mild, moderate, and severe fears¹⁵. Routine screening normalises the conversation, assessment clarifies needs, and tailored care ensures people receive right help at the right time. It prevents people from suffering in silence and makes addressing fear of recurrence a standard part of survivorship care.”

The review calls for FCR to be recognised as a core component of survivorship care. This includes normalising recurrence-risk discussions, introducing routine screening for FCR, and including fear of recurrence interventions as core to the survivorship care plan.

“Fear of recurrence can make it hard for women to move forward after breast cancer. That’s why conversations about personal risk need to become routine – so every woman understands her risk and the steps she can take to reduce it. From treatment options to regular follow-up, self-checks and discussions with doctors, these actions can turn fear into confidence. By working with clinicians and patient groups, Novartis is committed to making proactive, informed care a standard part of survivorship, so women feel supported and empowered as they move beyond treatment,” said Judith Love, Region President, Novartis Asia Pacific Middle East & Africa.