Two families spoke to Health Consumer Council’s Rachel Seeley about childhood cancer survivorship and the fragmented transition to adult services.
Around 750 children aged 0-14 years are diagnosed with cancer every year in Australia, according to Cancer Council. Each devastating diagnosis is met with hope, as advancements in treatment turn the focus to survivorship and the ongoing physical and emotional impacts of childhood cancer.
According to paediatric and adolescent oncologist Dr Thomas Walwyn, many large international studies show survivors of childhood cancer have an increased risk of chronic health conditions that can impact them years later.
“There are well-established guidelines for ongoing, life-long care for these children,” Dr Walwyn said. “These guidelines are changing with the increasing evidence and will continue to do so.
“As such it is vital that adult survivors of childhood cancer therapy are informed and have their care shared with and coordinated by a clinical service staffed with experts in this evolving field.”
Currently, there is no such service in WA. As a result, those who make the transition from paediatric to adult services have little support to navigate a fragmented system that has little big-picture planning for their ongoing wellbeing.
“This service is needed to support the wellness and optimal life participation of the adult survivors of childhood cancer therapy,” Dr Walwyn said.
It’s a sentiment echoed by many families in WA, including two parents who shared their stories with Health Consumers’ Council.
Lee’s son, Hugh, was 15 when he was diagnosed with sarcoma. Having previously had breast cancer herself, Lee had a good understanding of what he was in for and why keeping him connected to friends and community would be so important.
Cancer is lonely
“It made me understand straight away how lonely a cancer diagnosis is and how important it was to keep Hugh as connected as possible. Hugh’s a social kid, it was very important that he didn’t get isolated.
“At times you feel like you’re the only person who’s going through this. And then when we worked out it was sarcoma, and that’s a rare cancer, that’s even more lonely, because you really do feel sometimes that you are the only person in the world who’s got this thing.”
Lee spoke about how the connection to other kids going through treatment, and their parents, was so important during their time at the children’s hospital (Hugh was treated at Princess Margaret Hospital).
“When we first got there, other parents who were a bit more advanced through the process than us, took us in and stepped us through what was going on and helped us navigate the system in the hospital.”
Communal areas and shared rooms played an important role in maintaining connection, with Lee sharing how small moments like Sunday morning pancake parties and picnics with visitors were vital to the whole family’s wellbeing.
“It made us feel like we were still in the real world, and that’s really important. From what we’ve seen, that support doesn’t seem to be there anymore and that’s sad.”
Through their peer support work, Lee and Hugh have seen the impact of that lack of connection, particularly in older kids who are being treated in the adult system. With less focus on education and none of the camaraderie of other families, the lack of support in the adult system can be brutal.
“They feel very, very alone, and so do their parents,” Lee said.
Hugh was 17½ when he transitioned from childhood services, and the lack of connection and support was something that really struck Lee.
“When he was coming up to the end of his treatment, after he’d had surgery and eight rounds of chemo, that last couple of weeks knowing that we were going to be released from that regular care was scary. And when it happened, we both felt cut adrift.
Future fears
“We’d had lots of hands holding onto us and stepping us through everything in the child services, and all of a sudden that was going to be taken away from us. Hugh said he felt like there was very little information given to him about what to expect in adult services. He felt dismissed, and I felt the safety net had been removed.”
Being treated in adult hospitals for ongoing care as a childhood cancer survivor is complex and fragmented, as Lee and Hugh soon discovered.
“Hugh said when he was in the adult system and waiting to see the orthopedic surgeon, often he was the only person under 60 in the waiting room, and it made him feel like a freak, it was very difficult.
“The best thing for Hugh would have been the survivorship clinic. That’s the biggest thing I feel that he’s really missed out on,” Lee said.
While no two cancer journeys are the same, the struggle to transition to adult care is a common theme.
“It is an area that is seriously under-funded and under-resourced,” said Sherrie, another consumer who shared her story.
Sherrie’s daughter Teneille was diagnosed with leukemia when she was a year old. Her treatment was gruelling, and Sherrie’s family quickly learned that life rarely returns to ‘normal’ after childhood cancer.
“The end of treatment came when Teneille was nearly four. We thought it would all be over, and life could be normal, but we know now that’s rarely the case with childhood cancer,” she said.
New normal
“For the first five years following the cancer treatment, there are still a lot of hospital visits, blood tests and various other tests to monitor for relapses and side effects. It’s a stressful way to live, waiting for the results each time and wondering if you’re going to be delivered bad news again.”
Currently, the Oncology Survivorship Service at Perth Children’s Hospital runs from three to five years after therapy, until the transition to the adult sector.
“Unfortunately, once children age out of the survivorship clinic at the children’s hospital, there is no childhood cancer survivorship clinic in the adult hospitals. It is a huge oversight and a massive concern to families,” she said.
Reflecting on the unique, ongoing health needs of adult survivors of childhood cancer, Sherrie said her daughter, like many, needed specific monitoring as she aged.
“The onus has been placed on the survivors themselves to be informed and educate their doctors, which is fraught with problems. This is an area of great concern and big changes need to be made to ensure survivors are given the adequate care they need (and deserve) in a purpose-built childhood cancer survivorship clinic,” Sherrie said.
“We really need to do so much better.”
Teneille is now 16 and facing many long-term late effects of cancer and its treatment. Chronic pain, chronic fatigue, neurocognitive issues and mental health issues all have had a significant impact on her life, from school to work, sport, and social wellbeing.
She regularly meets with a team of specialists in the fields of complex pain, psychology, gynaecology, ophthalmology, podiatry, physiotherapy, cardiology, and adolescent medicine, attending hospital often as an outpatient.
These frequent appointments, tests and follow-ups have highlighted the need for a cohesive service with a multidisciplinary team dedicated to helping childhood cancer survivors thrive.
“Childhood cancer treatment is not the same as adult cancer treatment,” Sherrie said.
Childhood cancers are often treated more aggressively than adults, and treatment is administered while brains and bodies are still developing, making survivors more susceptible to long-term side effects months or years later.”
“It’s easy to assume that life goes back to normal once treatment is over, but it rarely ever does.”
Lee shared a similar outlook about the need for coordinated care for childhood cancer survivors, sharing how much she had to push to ensure all areas of Hugh’s health were monitored.
Holistic care
Their experiences highlight the need for holistic care from the beginning of the cancer journey, not just for the child but also their family.
“Cancer treatment is traumatic for children and support early on might possibly minimise the impact it has on the survivor in the future,” Sherrie said.
The need for increased support for childhood cancer survivorship in WA has been recognised for many years. A clinician and consumer effort in 2013-14 resulted in a proposed model of care but attempts to find support to implement it foundered.
“The WA Cancer Plan 2020-2025 identifies establishment of a statewide survivorship clinic for adult survivors of childhood cancer and development of a cancer transition health pathway that links general practitioners to the adult service as priorities,” Dr Walwyn said.
“These now need to be implemented more than ever as the adult survivors of childhood cancer therapy at PMH and now PCH fall through the gaps.”
ED: Rachel Seeley is part of the engagement team at Health Consumers’ Council of WA