Childhood cancer survivors face lifelong health effects after treatment

Climbing through his cubby window, Luca Kitson looks like any five-year-old playing happily outside. But his smile and agility belie his ordeal of childhood cancer that began two weeks before his second birthday. Almost three years after Luca finished 16 months of treatment, there is thankfully no evidence of disease returning to his body. But Luca is having to learn to live with the lasting side effects of his illness and treatment. More children are surviving cancer now but the toxic treatment they endure leaves most of them facing a lifetime of health problems, and even an early death. In Australia, 87 per cent of children who get cancer survive for five years after treatment, up from 73 per cent 40 years ago. Australia has one of the lowest childhood cancer death rates in the world, currently ranked second only to Japan among G20 nations. The flip side to this success story is the growing group of childhood cancer survivors who are left to deal with the consequences of the damaging medical treatment for the rest of their lives. As they become adults and the risk of complications increases, their problems are compounded by a lack of dedicated support and follow-up care for survivors, including those in WA. Perth Children’s Hospital head of oncology Nick Gottardo said some childhood cancers remain incurable and even those with good survival rates require treatment that leaves children with “a litany of problems that are lifelong and quality of life impeding”. “Even with medulloblastoma, which is one of the more successful in terms of survival, the side effects can be terrible,” he said. “It’s very intensive treatment.” This intensive treatment typically involves surgery to remove the brain tumour which can cause problems, chemotherapy which has numerous short and long-term effects such as heart, lung and hearing damage, and radiotherapy. “Radiation particularly is very damaging, because if you think about a child, their brains and their bodies are still developing, and wherever you irradiate, you affect the good cells that are also around the bad cells, so you get a lot of collateral damage,” Professor Gottardo said. He said radiation had many long-term side effects on, for example, intelligence, processing speed, memory, hormones, vision and hearing. Professor Gottardo said while the field was trying to move to “kinder” cancer treatments, most children with cancer today were still given chemotherapy, radiation or both. Luca was diagnosed with high-risk neuroblastoma, an aggressive cancer of immature nerve cells within the sympathetic nervous system. He had chemotherapy, surgery, two stem cell transplants, radiotherapy and immunotherapy. “It was hard for Luca. He was so unwell during the high doses. I’m talking temperatures in the low 40s, heart rates close to 200. There were nurses crying seeing him so unwell. It was very traumatic,” his mother Diana Kitson, a nurse herself, said. She said one chemotherapy drug was excreted through Luca’s skin and was so toxic that he had to be bathed four times a day. “I had to wake him up at 2am for him to have a bath. We had to change his bed linen each time. My husband and I had to gown up and glove up to hold him because we couldn’t have that chemo touch our clothes or our skin,” Ms Kitson recalled. Luca has so far beaten high-risk neuroblastoma’s average survival rate of only 50 per cent and will turn six in May. But his cancer diagnosis and treatment have altered his life forever. He suffered permanent hearing loss, and is blind in his right eye because a tumour grew around the optic nerve. The vision in his left eye is now impaired, which is possibly a side effect of radiotherapy. “He is an incredible little boy. He has just grown to deal with it in his own way,” Ms Kitson, from Bibra Lake, said. One of the chemotherapy drugs could have damaged Luca’s heart so he will need regular cardiac checks for life, and he’s at higher risk of new cancers because of the treatment he had. Ms Kitson said they would have to wait and see what else, such as Luca’s growth, hormones and fertility, has been damaged by his cancer treatment. “You’re basically gambling your child’s life because at the end of the day there’s a high chance of relapse, and if relapse occurs, there isn’t a cure,” she said. Ms Kitson became tearful as she remembered the other children being treated for neuroblastoma at PCH who weren’t as fortunate as Luca. “The hardest part to comprehend is that many of these kids died from cancer treatment complications rather than the cancer itself,” she said. “That’s telling us how brutal and horrible these treatments are. Some of these chemos haven’t been advanced since the 1960s or earlier.” Luca McIlroy defied even more dire odds of just 8 per cent to beat a rare brain cancer — Atypical Teratoid/Rhabdoid Tumour — which was diagnosed when she was three. The tumour’s location made Luca vomit constantly. She was unable to eat for 18 months and had to be tube fed. She was so sick and weak that she didn’t walk for five months. After surgery, Luca had seven months of chemotherapy and six weeks of daily radiation, as well as stem cell transplants and immunotherapy. “The treatment that Luca had would kill an adult,” her mother Brooke McIlroy, from Pearsall, said. Luca has been left with high frequency hearing loss, a visual processing disorder which affects her reading and writing, and permanent vertigo. She’s also at high risk of relapse of ATRT and, because of the treatment, other cancers. Luca’s growth was stunted during the treatment and when she started taking growth hormones at almost eight, she was the size of a four-year-old. Ms McIlroy said taking hormones was a very difficult decision because they came with more possible side effects, including growing tumours. “She’s spent most of her life being looked at, whether it was because she was bald or little,” she said. “I just wanted to try and help her get to a height where she wouldn’t be noticed anymore because she just wants to be a normal kid.” Now aged nine, Luca grew 8cm in her first year of taking growth hormones and still has no evidence of disease in her scans. “We’re very lucky because she’s a little legend and she gives 110 per cent in everything that she does. Everyone loves her,” Ms McIlroy said. Five years after they finish treatment, Luca and Luca will be transferred to PCH’s survivor clinic for annual monitoring. Kerrie Graham, who is PCH’s clinical nurse specialist for paediatric oncology survivorship, said the clinic had almost 300 children on its books, up from 120 when it was set it up 16 years ago. “Once they come to us, the focus changes somewhat from having cancer, having treatment for cancer and even relapse to more management of their known late effects of treatment that they may have already developed,” Ms Graham said. “They can get problems in any or all of their body systems depending on what treatment they had and the dose of treatment they had.” The children’s growth and development are monitored, as well as signs of medical injury. Ms Graham said the biggest problem affecting all survivors was psychological trauma, but there wasn’t currently access to a psychologist in the clinic. “That can be medical trauma, so they might still have needle phobia. There’s a fear of recurrence. There’s distress about being different from other family members and peers, and just ongoing general anxiety,” she said. Ms Graham said some young cancer survivors engaged in risky behaviour, such as taking drugs and vaping, which was related to their mental state. Research published in 2024 found that childhood cancer survivors in WA had a significantly higher risk of needing mental healthcare services than those who had not had childhood cancer. The analysis of medical records from 1987 to 2019 found that substance abuse was the leading cause of hospitalisations and mood and anxiety disorders were common causes of contact with community mental health services. Another study of WA hospitalisations over the same period found that childhood cancer survivors had more than three times the rate of chronic health conditions than non-cancer inpatients. Ms Graham said young survivors were also given age-appropriate education about their medical situation and the risks of late effects from their cancer to try and prepare them to advocate for themselves when they are discharged from the clinic. “We can only continue to see survivors until they are 18 or completing secondary school. Most are transitioned to their GPs who may have never seen a child with cancer,” she said. “Once we can no longer see children in a paediatric setting, it is like throwing them into an abyss. We take away their lifeline and send them off to cope on their own. This not only affects the survivor but their entire family.” Survivors are given a treatment summary at the clinic that is shared with their GP and any other medical services they use. Ms Graham said a dedicated pathway for the care and monitoring of childhood cancer survivors as they transition into adolescence and adulthood was crucial but currently did not exist in WA. Professor Gottardo said it was difficult for survivors once they were discharged from PCH and into the adult health system. “We try and find programs and specialists that have got a specific expertise or interest in it, but there is a definite need,” he said. Professor Gottardo described children who survived high-risk neuroblastoma as babies and toddlers and were now teenagers as a “new generation of survivors”. “These children are pioneers, because we don’t know what the long-term effects of that treatment is because these kids never survived in the past,” he said. “So, we’re trying to learn the consequences of that treatment they received all those years ago.” Carissa Boss was 12 when she was diagnosed with osteosarcoma, a bone cancer which caused her to lose her left leg. Now aged 50, Ms Boss has faced a litany of health problems ever since, including a double hip replacement at 25 because drugs she had as part of her cancer treatment caused her hip joints to deteriorate. Chemotherapy caused damage to her heart which resulted in heart failure during pregnancy and then surgery to replace a valve in 2021. An early-stage breast cancer was found during that operation and Ms Boss later had a double mastectomy and was given the all-clear. Tragically, the mother-of-two now has stage four metastatic breast cancer. “I’m not saying that I would change anything — I wouldn’t say ‘oh, don’t give me all those nasty drugs’,” she said. “Absolutely give me those nasty drugs. They saved my life, right? But it’s the only plausible cause.” Ms Boss said that when she was young, being aware of her care and future needs was not really on her agenda. “As a young adult, I didn’t really understand what I was going to face and I think that there is a real lack of education to the parents and to the children so that they can go on and live long lives,” she said. Ms Boss said childhood cancer survival rates had improved, but they were usually based on five or 10 years after treatment. “Almost all my friends from my childhood were still alive five years after treatment, and now we’re dying. We’re dying in our 40s and 50s,” she said. “I know that the reaction from people is sometimes, ‘but aren’t you lucky, you got 38 more years’. But I have a child in high school, and I’m a single parent and I wasn’t prepared for this.” Ms Boss said there was public support for saving children who get cancer, but no interest in the long-term care of survivors. “We need to tap into our community’s conscience and understand that if you save that little kid, that little kid is going to become an adult that faces way more risks than if they hadn’t been saved,” she said. “We need to have some kind of conscience about the ongoing care that we give these children.” This week, the Children’s Cancer CoLab launched a campaign to raise awareness of the lifelong support needed by around 20,000 childhood cancer survivors in Australia. More than 20 organisations, including the Perth-based Kids Research Institute Australia and the new WA Comprehensive Kids Cancer Centre, are calling for whole-person care plans and sustainable support systems for survivors. Former Australian chief medical officer and CoLab board chair Professor Brendan Murphy AC said it should be a national health priority. “Long-term physical and psychological needs must be addressed in every cancer survivor’s health plan, which is not happening for enough children and young adults after treatment,” he said. “Survivors often face multiple health and societal challenges, which require co-ordination across a complex health system. Unfortunately, the long-term support that survivors need often ends when they are too old for the paediatric system.” Professor Gottardo, who is clinical director of the new WA Comprehensive Kids Cancer Centre, said its purpose was to improve outcomes for children with cancer. He said that included better monitoring and psychological support for survivors in the clinic, and better and more research to develop novel and targeted cancer treatments and learn about their potential long-term effects on children before using them. “The focus is shifting from not just getting the kids to survive, but getting the kids to survive with less side effects and good quality of life,” he said. “Some of the parents call it thriver-ship. They want their kids to thrive, not just survive.”