“It doesn’t end”: Shiloh’s life after childhood cancer

More than two decades after treatment saved her life, childhood cancer survivor Shiloh Middlemiss is still managing its physical, psychological and financial consequences.

At 15, Shiloh Middlemiss was navigating school, friendships and adolescence when her life changed overnight.

She was diagnosed with acute myeloid leukaemia, an aggressive blood cancer, and underwent six months of intensive chemotherapy, followed by an allogeneic stem cell transplant and total body irradiation.

The treatment saved her life. But it was not the end of her cancer experience.

Now approaching 40, Shiloh has built a career in cancer research, bought her own home and contributes to clinical trials and consumer advocacy.

To most people, she looks like a childhood cancer success story. Behind that success, however, is a growing burden of chronic illness caused by treatment she received more than two decades ago.

“People think surviving means cancer is behind you, but it doesn’t end,”

The health impacts continue

Shiloh lives with diabetes, thyroid dysfunction, chronic kidney disease, liver dysfunction and infertility.

She has also developed a secondary cancer, a basal cell carcinoma in an area of her body with little sun exposure, and requires ongoing medication, monitoring and specialist care.

Each condition affects the others. Each specialist manages one part of her health. Every appointment, scan, blood test and prescription adds another layer of complexity.

While many people her age are largely healthy, Shiloh is constantly assessing whether a new symptom is part of ageing, another late effect of treatment or a sign of something more serious.

She describes survivorship as “like having a rock in your shoe”.

“It is always there,” she says. “It never truly goes away.”

Trauma can emerge years later

The physical effects are only one part of Shiloh’s experience.

During treatment, survival was the priority. It was years later, after the appointments and procedures had slowed, that she began to process what had happened.

“It wasn’t until I probably hit my late twenties that the PTSD hit,” Shiloh says. “I thought we’d got through this.”

Cancer also changed her adolescence and relationships. Shiloh had to mature quickly and found it difficult to relate to peers whose lives and concerns felt far removed from her own.

The impact extended across her family. Her younger brother was her stem cell donor, and her parents attended every appointment. More than two decades later, they still accompany her to follow-up clinics.

Navigating disconnected care

Shiloh still relies heavily on her paediatric survivorship team because they understand the uncommon and interconnected consequences of childhood cancer treatment.

She values her local healthcare providers, but often has to explain her treatment history and rare late effects to clinicians unfamiliar with childhood cancer survivorship. Even highly capable GPs can reach a point where there is limited information or guidance to support decisions about her care.

“I have multiple specialists, ongoing tests and health conditions caused by treatment that saved my life,” says Shiloh.

“Survivors should not have to explain their history at every door or be left to coordinate lifelong care alone. We need care that connects the whole picture.”

The costs also add up. Recommended surveillance, including annual mammograms and specialist follow-up can involve significant out-of-pocket expenses.

Shiloh knows she is fortunate to be able to meet those costs. Many survivors cannot, creating a risk that they will delay or stop follow-up and serious health issues will go undetected.

Survivorship is lifelong

For Shiloh, childhood cancer survivorship is not a finite chapter. It is a lifelong health condition requiring coordinated surveillance, chronic-disease management and psychological support.

Her experience shows why finishing cancer treatment cannot be the endpoint of care—and why Australia needs stronger evidence about how to support survivors throughout adulthood.

“We need a system that understands our original cancer treatment, recognises how the late effects fit together and helps us access the right care at the right time,” Shiloh says.

“Curing the cancer was the beginning. Survivors need support to live well throughout all the decades that follow.”

Help survivors thrive

Children’s Cancer CoLab is working with survivors, families, clinicians, researchers and community organisations to improve childhood and adolescent cancer survivorship research and care.

Better evidence is needed to understand which models of care work best, for whom and in which settings and to translate successful approaches into coordinated, equitable and sustainable care for survivors across Australia.

Learn more about childhood and adolescent cancer survivorship and CoLab’s work to ensure every survivor can thrive.