One-to-one specialist support

150 Hours

From our community:

It had been difficult to find the right support. After speaking with ICA’s genetic counsellor, I felt as though I could take a deep breath again.

Peer connection

3000+

From our community:

After my result, I felt like I was left to navigate risk-reducing surgery and surgical menopause on my own. Having peer support at such a pivotal moment is invaluable.

Trusted information

65k

Education and advocacy

800+

Asmira with her mum,
and in hospital after surgery.

Asmira's Story

When Asmira learnt she had familial adenomatous polyposis (FAP), there was suddenly so much to take in: what it meant for her body, her family, her surgery, her recovery and the decisions ahead.

“My mind was just so overloaded that I didn’t know where to start.”

FAP is a rare inherited bowel cancer syndrome, usually caused by a pathogenic variant in the APC gene. It can cause hundreds, and sometimes thousands, of polyps to develop in the colon and rectum over time.

These polyps can become cancerous, which means people with FAP have a high risk of bowel cancer, including colon cancer. If the condition is not actively managed, that lifetime risk can be up to about 95%, often at a much younger age than the general population.

For Asmira, reducing that risk meant going through preventive subtotal colectomy, a major surgery to remove 70% of her colon. Because FAP is rare and not widely understood, clear information and people who understood what she was facing were not easy to find.

Support that made the next step clearer

Through Inherited Cancers Australia, Asmira spoke with Gabby, ICA’s genetic counsellor, was matched with a peer support mentor, joined ICA’s online community, used practical resources and checklists, and attended an ICA Information and Support Day.

Each kind of support helped make everything feel more manageable. Evidence-based information and specialist guidance offered clarity and reassurance. A practical checklist made hospital preparation feel less daunting. One-to-one support gave Asmira somewhere to ask questions, big or small. Lived insight from someone with the same condition helped her feel less isolated and more prepared for what life might look like after surgery.

“I walked out of the Information and Support Day thinking, I’m actually not alone.”

Living with what surgery changed

Recovery from such major surgery was not straightforward. With 70% of her colon removed, Asmira had to learn how her body now responded to food, what it could tolerate, and what could leave her unwell or in pain.

Through ICA, Asmira also connected with people who understood the practical reality of life after surgery.

“They’re the ones actually told me, this is what you should be eating. People were just so nice and helpful. They know exactly what you’re going through.”

Since surgery, Asmira has had to rethink everyday routines that once felt simple, like preparing lunch, packing snacks, or eating out with family and friends. Certain vegetables, fruits, spices and meats can now make her very ill and leave her in pain. She is still learning what her body can manage, and whether these changes will improve over time or become part of life for the longer term.

Support should not depend on luck

Asmira is continuing to navigate the realities of life after surgery, one step at a time.

Looking back, she describes herself as lucky to have found ICA. But people should not have to rely on luck, or wait until things feel overwhelming, to find support.

Living with inherited cancer risk is not easy. With the right support, the next step can feel clearer and more manageable.

Your donation helps more people find trusted information, one-to-one support, peer connection and practical resources earlier, as they try to understand what inherited cancer risk means for them and their family.