It’s not enough for children to survive cancer; they also need the best support for their long-term health. Research into the effects of cancer treatment on children’s brains is helping guide post-recovery care.
Research into the long-term effects of cancer treatment on children’s brains is helping guide post-recovery care. Photo: Keira Burton
An avalanche of scientific discovery is addressing many formerly untreatable and incurable cancers and survivorship is now a community bulging with numbers, quality of life, and future plans.
The progress within the past generation is transformational and the next few years’ promise is for even better therapies as stem cell engineering and gene editing become more mainstream.
But, placing the sense of wonder and praise aside, this is a ‘what happens next?’ moment for childhood cancer, which is still being researched and understood and in which inequalities still persist: The survival rate is more than 80% for children in high income countries, but only between 15% and 45% for children in low- and middle-income countries (LMICs).
The very mechanics of life-saving treatments—from chemotherapy to radiation—and the emotional toll of high stakes care can have significant structural impact on a child’s brain at critical times during its growth and development.
Despite huge resources and attention being focused on diagnosing and treating conditions, the study of these treatments’ impact on children in later life has received marginal attention. Yet there are clear connections between disrupted brain development and a legacy of debilitating physical and psychological conditions.
Children being treated for cancer experience a dual threat from the neurotoxicity of the medicines and procedures and the emotional turmoil that engulfs them and their families.
Lifelong implications for childhood cancer patients
In some cases, the psychological effect, and aftershocks, of cancer can be similar to traumas such as violence, neglect, and abuse. Chemotherapy or radiation to the brain may also slow learning and the ability to process information leading to difficulties in school and career prospects.
Treatments have also been implicated in reduced bone growth, thyroid issues, hearing and vision loss, lung, liver, or kidney problems, and survivors also experience a slightly elevated risk of future cancers. Any of these, even in mild degrees, can reduce quality of life and neurodevelopment. This is exacerbated in LMICs where survivorship support is critical.
Neuroimaging studies have also revealed that some therapies can result in changes to brain structure and function across various regions, while chemotherapy can damage blood vessels in the brain, increase risk of stroke, and interfere with regions that regulate feeding behaviours, heart rate, and circadian rhythm.
“Researchers have long known that chemotherapy, radiation, and other cancer treatments can have detrimental effects on the brain, which is why the phrase ‘chemo brain’ is so common. These treatments can be especially harmful to developing brains, such as those of children with cancer,” says Dr Hilary Marusak, a developmental neuroscientist and director of the Trauma History Investigation of Neurodevelopment in Kids (THINK) lab at Wayne State University in the US, whose group has been studying the impacts of early stress and trauma on brain development, and psychiatric risk in children and adolescents, for more than 13 years.
“Brain health is intricately linked to physical health. Changes to the brain can affect mental health and increase the risk of physical health conditions. It stands to reason that the stress and adversity related to paediatric cancer could also have lifelong implications for both mental and physical health,” Marusak says.
"It stands to reason that the stress and adversity related to paediatric cancer could also have lifelong implications for both mental and physical health."
“One brain region particularly susceptible to the neurotoxic effects of chemotherapy and radiotherapy is the hippocampus, which is crucial for learning and memory, including emotional learning and memory.”
MRI studies and other research have shown that the hippocampus is a key focus in the development of PTSD in adults. Marusak adds: “I was surprised to find that the stress and potential trauma of a paediatric cancer diagnosis weren't a major focus in neuroscience research.”
This prompted a review by Marusak’s team showing that some of the same areas of the brain affected by stress and trauma—and thus implicated in PTSD—may also be susceptible to the stress associated with a paediatric cancer diagnosis. That stress may compound the effects of cancer treatments on various parts of the body, impacting brain development and lifelong mental health outcomes.
Marusak says, “We also know that cancer and other medical conditions are very stressful and potentially traumatic, not just for children but also for their families. A cancer diagnosis is a life-threatening and life-changing experience for children and families.”
Support in a stressful environment
Children can fall into a care void once they have completed treatment, and support recedes as their health and prognosis improves. The chime of the bell clanging to signify a cancer-free life as a child leaves a hospital ward has long faded by the time other treatment-related health issues surface.
With academic work still gathering evidence and momentum, a huge burden falls on charities and not-for-profit organisations to recognise the trauma and provide support that minimises its impact. This is particularly relevant in LMICs where diagnosis and treatment resources are thin.
Hedley Lewis, CEO at CHOC Childhood Cancer Foundation South Africa, says that LMICs experience challenges across the patient journey—from awareness through diagnosis, treatment, and after-care—and that practical and emotional support throughout is a fundamental of better outcomes.
“We look to support these families in a very treacherous and stressful environment,” he says. “Our organisation augments the paediatric oncology and multidisciplinary team and one of our main programmes focuses on the psychosocial environment. Treatment is not the end of the journey and families often require support for an extended period of time.”
CHOC, established in Johannesburg in 1979, provides extensive support in the form of transport, home-away-from-home facilities, and nutritional support across South Africa. They make it easier for patients and their families to access lifesaving treatment at therapy centres and provide post-treatment support to combat stigma, rejoin education, and gain employment.
“We are there throughout the journey and recognise patients could face long-term medical risks depending on what type of cancer and treatment they had,” Lewis adds. “Survivors may encounter additional hurdles, such as securing insurance, medical aid coverage, or employment, and navigating social impacts like stigma, relationships, marriage, and cultural considerations related to fertility.
“Going back to a ‘normal’ life is difficult for the child and their families. Children and teenagers often miss important school time at key periods of their development, and reintegrating into school environments can be tough so our teams communicate with teachers as well as families to make that easier.”
CHOC runs a number of post-treatment programmes that offer practical advice to families such as informative guides, handbooks, and webinars which provide support for psychological and physical health. Social work teams assist with reintegration into schools and communities, and with the transition to adult oncology care.
CHOC also links children and teenagers with relevant resources and has established WhatsApp groups where they can share information, interests, and experiences.
Kicking cancer stress
Empowering children, who often feel frightened, isolated, and helpless during treatment, is the focus of an innovative approach to dealing with the stress, pain, and trauma of childhood cancer. Rabbi Elimelech Goldberg, who lost his two-year-old daughter Sara Basya to leukaemia in 1981, has fused the discipline of martial arts with medical practice and breathing techniques to create a unique healing protocol.
Specially-trained martial arts instructors at Kids Kicking Cancer lead children on breathing, visualisation, and relaxation techniques. Photo: Kids Kicking Cancer Canada
In 1999 Goldberg founded the nonprofit Kids Kicking Cancer, which has grown from one hospital in Detroit, Michigan, to 28 hospitals across the US and Canada; it also has a presence in Africa and Europe. Kids Kicking Cancer deploys specially-trained martial artists to lead the children on breathing, visualisation, and relaxation techniques. They deliver group or one-on-one training sessions for children over three years old as well as their siblings, and teach traditional karate moves along with mind-body techniques.
Goldberg, affectionately known as Rabbi G to the children, says that the objective is to give the children a tool that reduces their stress and ‘mitigates trauma’. Many of these children have become tutors on the programme after recovering from cancer.
“One of the long-term impacts of childhood cancer is post-traumatic stress which is a series of conditioned responses learned from negative experiences,” Goldberg says. “Children identify the physical experiences of stress, whether it’s been triggered by depression or angst, which then connects back to old memories of being in hospital, being afraid of dying, and all the trauma of paediatric cancer, and it becomes integrated in them.
"Children identify the physical experiences of stress, whether it’s been triggered by depression or angst, which then connects back to old memories of being in hospital."
“But there is also such a thing as post-traumatic growth (PTG), where people are able to say, ‘I was able to take that stress and get through it.’ If you give people a sense of purpose, it lowers pain.” According to Goldberg, MRI results have shown positive differences in children after four interventions by Kids Kicking Cancer.
Goldberg, who is also a clinical assistant professor in paediatrics at Wayne State University, adds: “If the chemotherapy or the radiation makes a genetic change, or an epigenetic change, that's going to potentially result in a myriad of health problems later in life. We know that stress lowers the immunological response so if we are able to help the children re-engage the immunological system, it will be the most effective way of helping them fight whatever condition might materialise later in life. Self-regulation works.”
The martial artists with Kids Kicking Cancer offer the children a saying: “It is breathing in the light and blowing out the darkness,” Goldberg says. “What we do is simple and we know that it works, and one of the greatest testimonies is that so many of our kids want to train to be teachers to help others. One of the first kids I helped is now a 31-year-old black belt who is a tutor with Kids Kicking Cancer.”
Awareness and understanding are growing but this remains a marginalised sector of health in both high-income countries and LMICs. Marusak observes: “Treatments for common types of paediatric cancer, like acute lymphoblastic leukaemia (ALL), have improved dramatically over the past 50-plus years. This is truly a modern medicine success story. However, there is still more work to be done.
“It’s not enough for kids to survive cancer. We need to do everything we can to improve their psychosocial outcomes and long-term health. We must invest more in helping children and their families cope with this stressful experience and support them after cancer treatment ends and when they transition into adult care from paediatric care.”
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