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Support for navigating the what-ifs of cancer risk and recurrence

The “what-ifs” can creep in at any time: waiting for results, planning surgery, or even on a quiet day at home. Fear of cancer, whether it’s a first diagnosis or the thought of recurrence, is something many in our community carry.

This hub was created so you don’t have to carry it alone. Here you’ll find support, ideas and voices from people who understand, along with trusted guidance and safe spaces to turn to when the thoughts feel too much.

You’re Not Alone in the What-Ifs

Invading thoughts can feel overwhelming when carried alone. Across our community, many have spoken about living with this weight through our research and focus groups. Invading Thoughts: ICA Psychosocial Support Initiative is our response: a way to acknowledge these emotions, draw on collective strength, and provide evidence-based resources so no one has to face the what-ifs in isolation.

Project Shirley

Our nationwide, patient-led study of breast cancer patients found that fear of recurrence is one of the most pressing challenges people face. 96% of participants reported that living with breast cancer had a negative impact on their mental health, with 50% stating that the uncertainty of breast cancer resulted in a significant or very significant impact. Many described how isolating it felt, especially when early breast cancer is often called the “good” cancer, making these worries even harder to share.

ICA Focus Groups

In our focus groups, we heard how these worries extend across the inherited cancer community. For some, the what-ifs are about the chance of developing cancer in the future. For others, they surface as fears of cancer returning after treatment. The experiences are different, but the weight of these thoughts connects us.
Everyone experiences invading thoughts differently. Some find comfort in reading others’ words, some prefer practical tools, and others may want both. Here you’ll find resources in different formats (videos, written quotes, creative expressions, checklists and flowcharts), so you can choose what feels most useful for you right now.

Evidence-Based Guidance

When worry feels heavy, practical tools can help restore a sense of steadiness and control. This section offers evidence-based resources in different formats, from flowcharts, conversation guides to calming exercises, so you can find the approach that fits you best.

Support Pathways

Worry can show up in many ways. This tool helps you recognise what’s on your mind and think about what kind of support would feel most helpful today.

Download

Scanxiety Support Toolkit

A practical pack of strategies, from quick calming tips to community insights, to help you through the stress of scans and follow-up tests.
Download

Health Conversation Guide

A comprehensive guide to start conversations with healthcare professionals about fear of cancer or cancer recurrence.
Download

The Impact of Daily Habits

The way we care for our bodies can shape how we feel emotionally. Research suggests that being physically active provides a protective effect against cancer and cancer recurrence. Physical activity can improve physical functioning, quality of sleep, mood and reduce your psychosocial and emotional stress. As well as reduce your risk of other chronic diseases.

Exercise, nutrition, rest and stress-relief practices not only support physical health but can ease anxiety, lift mood, and create a sense of steadiness in daily life. These shifts don’t need to be dramatic, even small, consistent changes like a short walk, a regular sleep routine, or choosing nourishing foods can make a real difference over time.

  • Watch our Expert Q&A Videos with a psychologist and exercise physiologist to learn simple, evidence-based ways to support both body and mind.

  • Explore our Health Conversation Guide for questions to take to your GP about accessing specialist support, such as a nutritionist, psychologist or exercise physiologist.

The Psychology Of What-Ifs

Clinical Psychologist Rebecca Van Lloy explains why thoughts about cancer or recurrence can feel so powerful and hard to quiet.

Breathe Through the What-Ifs

Join Rebecca for a guided breathing exercise designed to ease racing thoughts and calm the body’s stress response.

Expert Q&A with Clinical Psychologist

Conversation with Clinical Psychologist Rebecca Van Lloy

Coming soon...

Why Movement Helps Calm the Mind

Physiotherapist Shevaughn Mawter explains how movement supports both physical and emotional wellbeing.

Gentle Exercises to Ease the What-Ifs

Shevaughn demonstrates easy movements to help ease tension and calm the mind, designed for anyone looking to gently re-introduce movement after treatment or recovery.

Quick Grounding Tips for the Waiting Room

Shevaughn shares simple grounding techniques you can use while waiting for scans or appointments.

Support Spaces

Carrying the what-ifs alone can feel overwhelming. This section brings together ICA’s own support services alongside trusted helplines. Whether you’re living with inherited cancer risk, in treatment, or years beyond, support is here at every stage. You can step in and out of these spaces as you need.

Inherited Cancer Support Service

Talk to Gabby, our genetic counsellor who understands both the medical side and the emotional weight. This service can help answer questions, guide your options, and ease some of the what-ifs.

Peer Support Program

Connect with a trained community member who’s lived with inherited cancer risk. They’re here to share understanding and encouragement in a way only peers can.

ICA National Online Support Group

A safe space to share, ask, or simply listen. Whether it’s small wins, worries, or questions, our groups remind you that you don’t have to carry the what-ifs alone.

If you need extra help...

Sometimes the what-ifs can feel heavier than you can manage on your own. Alongside ICA, these trusted services are here for you:
  • Cancer Council 13 11 20 — Information and support for anyone affected by cancer.
  • Beyond Blue 1300 22 4636 — 24/7 support
  • Lifeline 13 11 14 — 24/7 crisis support
  • 13YARN 13 92 76 – a 24/7 support line where Aboriginal or Torres Strait Islander Crisis Supporters are ready to listen and walk alongside you.
  • GP or Psychologist — Your doctor can help you access a mental health treatment plan for up to 10 Medicare-subsidised sessions with a psychologist each year.
  • Peter Mac Support and Clinical Services — Guidance on fear of recurrence or progression, plus clinical services at their Melbourne campus, including psychology, the optimisation clinic, and the Wellbeing Centre.

Expressing the What-Ifs

Sometimes it helps just to hear from others who get it. In this section, people in our community share the emotions that come with cancer risk, the small things that help them through, and even creative expressions that put feelings into colour and shape when words aren’t enough.

Gentle Reminder: This section contains personal reflections about fears of cancer and recurrence. For some, naming these emotions can feel validating and supportive. For others, it may feel confronting. Please take care as you read or watch, and revisit another time if it feels too heavy.

In their voices

Eve talks about the what-ifs

Eve opens up about the thoughts that linger after her Lynch Syndrome diagnosis, and how she finds steady ground while navigating the what-ifs.

Eve shares how loved ones can help

Eve reflects on how small acts of understanding from loved ones can ease the weight of worry.

Eve's words of reassurance

Eve reminds us that these feelings are valid, and that within the ICA community, many share them. You don’t have to navigate these emotions alone.

Elle talks about the what-ifs

Elle describes the “ticking time bomb” feeling that can follow a cancer diagnosis, the shifting answers of genetic testing, and how exercise has become her “non-negotiable” for finding steadiness and strength.

Coming soon...

Elle shares how loved ones can help

Elle opens up about the weight of worrying for her loved ones and how the what-ifs about family can sometimes feel heavier than her own.

Coming Soon...

Elle's words of reassurance

Everyone processes the knowledge of genetic information differently. Elle’s perspective turns that knowledge into empowerment, reframing genetic awareness as a source of clarity, care, and connection.

Coming soon...

In their words

The what-if's come in waves

Some days the mind is quiet, other days the invading thoughts crash in suddenly. Many in our community know this same rise and fall.

Toni (Lynch Syndrome)

“With Lynch Syndrome related cancers, there are so many you can’t screen for. It’s that ‘never quite knowing’ uncertainty makes the what-ifs hard to manage

“Every little ache or pain makes you wonder, and after sitting with it for a while, you end up at the doctor just to check.

“I’m lucky mine listens and says, 'I hear you, let’s do some tests.’”

Sarah (Gastrointestinal stromal tumor, GIST)

“I've had moments where I get trapped in that fear and a cloud of anxiety that I just kind of can't get out of. Other times I use what we call the lunch box approach: compartmentalising the worry and resetting my expectations for the day. Some days success is just getting up, eating three meals, and resting. On steadier days, I can set bigger goals and focus on living fully.

The what-ifs come and go like waves, so I try to adjust what I expect of myself and keep life moving forward.”

These What-Ifs Go Beyond Me

Worrying more for loved ones than for yourself is something many have voiced. The what-ifs often stretch across whole families.

Renee (BRCA1, TNBC)

“Getting my genetic testing result was far more daunting than my cancer diagnosis. Because it can mean that my cancer doesn’t stop with me. When it means my loved ones can be involved, that was the hardest.

“I spoke to a counsellor a couple of times about feeling really guilty. Talking to a third party helped.”

Sarah (Gastrointestinal stromal tumor, GIST)

“It’s not just my fears, it’s my husband’s and my son’s too."

“As a family, we remind each other that we can’t all go down at once. If one of us is panicked or stressed, the others hold things up until it passes.”

Finding Steady Ground in the What-Ifs

The what-ifs often feel overwhelming because so much feels out of our hands. These voices share the small, practical things that have helped them feel more grounded and regain a sense of control.

Renee (BRCA1, TNBC)

“The lack of control is really, really difficult. When something feels off, the alarm bells start. Sometimes I go to the doctor just to be sure, and when the scans come back clear I leave feeling a bit silly. Is it menopause? Is it just getting older? I can’t always tell.

“What helps is knowing I’m not the only one, others feel the same, and that reminds me my worries are valid.”

Sarah (Gastrointestinal stromal tumor, GIST)

“So much of living with cancer, or even just the fear of it, can make you feel completely powerless.

“For me and my husband, having information and doing research helps. It gives us a sense of calm, like we’ve taken back the wheel. “I can’t control everything, but if there’s a part I can influence, I’m all in, and that’s when I feel a bit better about it.”

Creative Expressions

Art can give shape to feelings that are hard to put into words. For some in our community, creativity has been a way to process the what-ifs of inherited cancer and share their stories. Here are a couple of examples, offered as inspiration.

Pascale uses her art as a way to process her own inherited cancer risk and to advocate for informed choices, visibility, and support. Her work reflects both personal experience and a call for greater awareness.
The Creative Gene Art Project was a collaboration between ICA, Prof. Martha Hickey and her team, and artist Deborah Kelly. Through guided collage workshops, our community turned experiences of inherited cancer risk into powerful works of art.

Shared Stories, Shared Strength

No two stories are the same. Sharing our feelings, tips, and ways of coping allows these diverse experiences to come together, reminding us we’re part of a community that understands.

Invading thoughts feel lighter when carried together. 

These lived experiences remind us that many share this weight, and within our community there is strength. Our services (Inherited Cancer Support Service and Peer Support Program), together with the ICA community (National Online Support Groups), offer places of understanding and support. Here, what feels overwhelming on your own can be named, shared, and made more manageable.

Reach out. x




This initiative is supported by: