Alex's Lemonade Stand Foundation for Childhood Cancer

In 1989, researchers interviewed 1,928 adult survivors of childhood cancer. The cohort had been diagnosed between 1945 and 1974. Nearly 20% of the survivors didn’t know what type of cancer they had, and even more surprising: 14% of the people interviewed said they never had cancer in the first place. The study’s authors concluded that “physicians should be aware that a substantial proportion of long-term survivors of childhood cancer may not reveal their past history of cancer and its treatment, and possible clues to the cause of the presenting condition may thus be missed.”²³

Survivorship seemed to be a mystery, even to the survivors themselves.

But the long-term impacts of childhood cancer treatment had long been an interest to scientists. One of the earliest indications that treatments could kill cancer while also harming growing bodies was in 1952, when M. H. Wittenborg, a radiologist, discovered that radiation to the spine would result in scoliosis.²⁴ In the 1960s, the international Late Effects Study Group was established, which then inspired more efforts.²⁵

In 1975, the landmark and much-cited perspective piece “Pediatric Cancer in Perspective: Cure Is Not Enough” was published in the journal Cancer.²⁶ Authored by Dr. Giulio J. D’Angio, this piece fueled the continued belief that survivorship needed to be studied, treatments needed to come without costs, and childhood cancer survivors needed to be able to access long-term care.

Side Effects of Childhood Cancer

At diagnosis, children typically are experiencing symptoms from their cancer. Treatment can reduce those symptoms but can also cause a bevy of short-term, immediate side effects. When those side effects don’t go away, they become long-term. But children treated for childhood cancer can also experience late-term side effects—new health conditions that emerge years after diagnosis and treatment. 

Both long- and late-term side effects impact quality of life for childhood cancer survivors. There are the physical impacts, which are detailed below and organized by treatment type. There are also long-term impacts on cognitive, psychological, social, and even financial health. Cancer survivors ages 18-64 were more likely to report high out-of-pocket health related expenses, and one-fourth reported having long-term financial hardship.²⁷

Long- and Late-Term Side Effects from Treatment³⁰

Listed below are possible long- and late-term side effects from common childhood cancer treatments. As new treatments, like immunotherapies or targeted drugs, become more widely used, researchers will continue to track and monitor the health of survivors. Read more about these treatments in Section 4. The severity and existence of these side effects is dependent upon the dose and frequency of treatment, the area of the body impacted by treatment or surgery, the age at diagnosis and treatment, and many other factors. 

• Chemotherapy
  Cardiomyopathy (heart muscle damage), lung damage, thyroid problems, growth hormone deficiency,  delayed puberty, infertility, early menopause, memory and concentration issues (“chemo brain”), learning problems, nerve damage (neuropathy), hearing loss, vision issues (cataracts, glaucoma), osteoporosis (weak bones), dental abnormalities (short roots, missing teeth), growth issues, kidney and liver dysfunction, increased risk of developing new cancers later in life, depression, anxiety, and PTSD.
• Radiation
  Learning disabilities, memory issues, seizure disorders, balance problems, growth hormone deficiency, thyroid issues (hypo/hyperthyroidism), puberty problems (early or delayed), adrenal issues, dental problems (dry mouth, tooth decay, shape/enamel issues), vision/hearing loss (cataracts, glaucoma), jaw stiffness, facial asymmetry, permanent hair loss, short stature, scoliosis (curvature), bone thinning, fractures, reduced muscle growth, joint problems, osteonecrosis (bone death), increased risk of heart conditions, chronic pain (fibrosis), infertility, metabolic issues (obesity, syndrome X), chronic pain, secondary cancers.
• Stem Cell Transplant
  Growth hormone deficiency, thyroid issues, delayed puberty, infertility, osteoporosis (bone loss), attention deficits, memory problems, organizational challenges, slower processing speed, poor handwriting, increased risk of heart problems earlier in life, restrictive lung disease, liver scarring, iron overload, kidney toxicity from medications, high blood pressure, Chronic Graft-Versus-Host Disease (cGVHD can affect skin, eyes, mouth, lungs, gut, liver, muscles, and joints and appear months to years post-transplant),  cataracts, dry eyes, dental problems, anxiety, depression, sleep disturbances, and social challenges.
• Surgery
  Varies greatly per cancer type for brain tumors and surgical resection can cause permanent neurological side effects impacting speech, movement, balance, and vision; it can also head to hydrocephalus, a condition caused by excess cerebrospinal fluid. Because of the dangerous pressure hydrocephalus causes within the brain, a shunt placement is required to drain the excess fluid. Bone tumor resection can lead to limb loss or bone weakening. Surgery to remove tumors on organs can impact those organs’ functions.
• Immunotherapy
  Since immunotherapies work by boosting the immune system, this can sometimes lead to it attacking the body’s own healthy tissues, causing autoimmune-like conditions (like type 1 diabetes) or chronic inflammation.
• Newer treatments
  As new treatments are developed and FDA-approved, scientists are working to understand the potential long- and late-term side effects.

Long-Term Follow Up Guidelines

For childhood cancer survivors, long-term follow up at a specialized oncology survivors clinic is critical. The Children’s Oncology Group (COG)³¹ established survivorship guidelines for childhood cancer survivors. Updated in 2023, the guidelines give clinicians a roadmap for long-term follow up care, including transitioning to adult care (See Section 3). While most COG institutions have a dedicated survivor clinic, less than 75% of eligible patients are accessing those services.³² A survivorship care plan should include:³³

1. Exams and imaging to check for recurrance or secondary cancers
2. Supportive care for long- or late-term side effects
3. Mental health support
4. Referrals for legal and financial support
5. Referrals to specialists such as cardiologists, neuropsychologists, physical therapists, and others, as needed 
6. Nutrition and health and wellness planning 
7. Transition to adult care

Beyond the COG Survivorship Guidelines, the Childhood Cancer Survivors guide offers practical and personal guidance.