Without a doubt, the highest priority for the research St. Baldrick’s donors and volunteers support is to save the lives of kids fighting cancer.
But we can’t stop there. Not when we know the price kids are paying, and not when research can help change that.
What is that price? That depends on the type of cancer, specific treatments a child received, and more. These “late effects” may occur many years after treatment, or just months after – and the word “late” may seem especially jarring applied to a toddler.
Many survivors today are cared for by survivorship clinics, where professionals are trained to know what to look for, based on the patient’s specific medical history. But still too often, young adults may receive care from others who may not know to be vigilant in checking someone so young for heart disease, other cancers and more. And the risk of late effects only increases over time.
The following list does not represent all the late effects a childhood cancer survivor may face – just some of the more common ones.
Heart disease
Advances in treatment are helping to reduce the risk of heart disease in childhood cancer survivors and most do not develop major heart problems. Yet early heart disease is one of the most common serious problems faced by childhood cancer survivors. In fact, the only higher risks are of a recurrence of their cancer or the development of a new cancer. Heart disease in survivors are most often a result of radiation to the chest area or a type of chemotherapy called anthracyclines, but all childhood cancer survivors should be monitored regularly for cardiovascular late effects.
A childhood cancer survivor himself, Gregory J. Aune, MD, PhD, shares his personal experience and thoughts during National Cancer Survivor Month.
Secondary cancers
Fighting cancer once as a child is hard enough. But some survivors are also at risk of developing another cancer. This could be as early as months after the first one or later in life, but often decades earlier than the general population. This risk varies greatly depending on the original type of cancer and the treatments the child received. Some also have genetic patterns or syndromes that predispose them to cancer, and while prevention of childhood cancer in general is not yet possible, researchers are working to prevent cancers in these patients where the risk is particularly high.
Cognitive issues
Radiation and chemotherapy can affect the cognitive functioning of survivors, with challenges in areas like attention, memory, visual perception, motor control, and executive function (which includes time management, planning, organization, self-control and more). About one-third of all childhood cancer survivors experience some cognitive late effects, with an increased risk for brain tumor survivors. Yet many childhood survivors excel in school and even go on to become researchers, themselves, working on improved therapies.
“We are so grateful for all the care we received and continue to receive. But as time went on, small health problems showed up and continued over time. Massy had stage 2 kidney disease, which meant she had to have lots of check-ups and drink copious amounts of fluid each and every day. She was then diagnosed with “knock knees” and had several surgeries to put pins into her growth plates. Later, her growth in general was noted at only 1 percentile, so growth hormones were layered in. Later, we found out she was ‘sterile’ and that was a tough day – for a little girl to comprehend that she would never be able to carry her own child. Then, we learned she would need both growth hormones and estrogen to get through puberty.” – Dwight, Massy’s dad
Growth hormone deficiency
Some childhood cancer survivors may appear younger and smaller than children their age, as a result of changes to the endocrine system, including the pituitary gland, which makes the growth hormone. This risk is highest for those treated before reaching adult height and patients receiving radiation to the brain or other areas of the head or brain surgery. Growth hormone deficiency in survivors can be treated, and may persist into adulthood, causing other issues including decreased muscle strength, increased body fat, thinning of the bones and more.
Hearing loss
About 10% of childhood cancer survivors experience hearing loss as a late effect. This can be caused by the “platinum” group of chemotherapy drugs; radiation to the head; surgery involving the brain, ear or auditory nerve; and some other drugs. The risk is highest for younger patients and those receiving more intensive doses of chemotherapy or radiation. In 2022, the FDA approved a new drug aimed at reducing the risk of cisplatin-induced hearing loss.
“Chase had to re-learn the meaning of words, and how to hold a pencil, and suffered from cataracts and permanent hair loss,” says his mom. These were late effects of the brain tumor he was diagnosed with at age two. Six years later, Chase was diagnosed with a secondary cancer. More treatment means more late effects. And Chase is only 14.
Obesity and metabolic syndrome
Childhood cancer survivors have an increased risk of metabolic syndrome – a cluster of symptoms including insulin resistance, systemic hypertension, obesity. Since these can also contribute to serious cardiovascular problems, researchers are working on how to help survivors address these late effects.
Musculoskeletal issues
Some survivors have a higher risk for treatment-related late effects to their bone and muscle growth. These can result from radiation (especially to the area between the shoulders and pelvis), surgery in the spine or chest area, or a tumor in or near the spine. Problems can include one side of the body not growing at the same rate as the other, bone pain, weak bones, joint stiffness, and more. Survivors may also be at risk for early declines in muscle health which can contribute to other health concerns later in life.
Infertility
The risk of infertility in childhood cancer survivors depends on their gender and their specific treatment. Some chemotherapies, especially those called alkylators, can cause infertility in both boys and girls, or premature menopause. Radiation can also damage the cells that create sperm in boys or leave girls with fewer eggs. Researchers are working to lessen these late effects and patients can work with their doctors to consider sperm banking or the freezing of eggs.
2012 Ambassador Sarah and her fiancé, Patrick, have been through a lot during their time together, including the ups and downs of Sarah’s childhood cancer journey. Despite the challenges, the love and support they have for each other remains constant.
Breathing difficulty
Some survivors have a risk of late effects to the lungs, which may include radiation pneumonitis, pulmonary fibrosis, chronic obstructive pulmonary disease (COPD), pneumonia, asthma and more. These risks are higher for those are treated with a combination of surgery, chemotherapy and/or radiation. Also at risk are survivors who had infections or graft-versus-host disease (GVHD) after a stem cell transplant, those who had asthma before cancer treatment, and survivors who smoke.
Low thyroid hormone
Thyroid late effects are more likely to affect those treated for certain cancers (acute lymphoblastic leukemia, brain tumors, head and neck cancers, Hodgkin lymphoma and neuroblastoma) and those treated with a stem cell transplant. Radiation therapy, MIBG (radioactive iodine) and some chemotherapies also increase the risk for thyroid issues.
Emotional and social issues
Cancer pulls the rug out from people of all ages, but children, teens and young adults face challenges to their emotional health and social development unlike those who fight cancer later in life. Some may experience anxiety, depression or post-traumatic stress disorder related to pain, physical changes (from hair loss to amputation), and fear of having to fight cancer again. Teens, especially, may reach social milestones (like a first romantic relationship or graduation) later than their peers. All this can take a toll on a survivor’s relationships, education, employment, and health.
Any parent will tell you how incredibly grateful they are that their child has survived cancer. All too often, they and their child have suffered the loss of another child they became close to on their childhood cancer journey. The gift of life is never to be taken for granted.
But these late effects – and others – are among the reasons we must continue to support not only the development of life-saving treatments, but also treatments that are less toxic. Many childhood cancer survivors will live decades after treatment ends, and research can help them live longer and healthier.
Donate now and help support research into better treatments for kids with cancer.
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