Late effects of cancer in children and young people

In the UK, there are increasing numbers of survivors of children and young people’s (CYP) cancer, and over 80% of these patients are being cured. Of this approximately 60–90% develop one or more chronic health conditions, requiring varying levels of intervention depending on the individual need.

Late effects of treatment can be permanent and are classified as effects of treatment that do not resolve within 6 months following treatment or can also occur months or years after completing treatment.

There are unique developmental, physiological, and psychological challenges associated with receiving a cancer diagnosis during childhood, adolescence, or early adulthood, necessitating specialised interventions and dedicated support. Survivors are experiencing mental health issues and requiring ongoing mental health support with many individuals will undertake trauma therapy as part of their recovery.

Late effects are particularly significant in CYP compared to adults for several reasons: 

  1. Developmental Vulnerability:  Organs are developing making them more susceptible to treatment toxicities, which disrupt normal development.
  2. Higher Sensitivity to Radiation and Chemicals: CYP have cells that are dividing and replicating more rapidly than those in adults which makes them more vulnerable to the DNA damage caused by treatments.
  3. Longer Lifespan Post-Treatment: CYP are treated at a younger age, they have a longer period to develop late effects such as chronic conditions (metabolic syndrome, premature ovarian insufficiency, early menopause) or secondary cancers.
  4. Impact on Growth and Development: Treatments can affect growth plates in bones, hormone-producing glands, and the developing brain, leading to growth deficiency, hormonal imbalances, and cognitive impairments.
  5. Psychological Impact: Early exposure to intense medical treatments can have a profound and lasting psychological impact, affecting mental health and cognitive development.

Contributing factors

Late effects for CYP are multi-factorial, and therefore not all patients are at risk.  However, they can be anticipated based on:

  • Tumour location
  • Direct tissue effects
  • Tumour-induced organ dysfunction
  • Mechanical effects
  • Surgery
    • Technique
    • Site
    • Post-operative complications
  • Systemic Anti-Cancer Therapy
    • Therapy type:
      • Cytotoxic chemotherapy including the mechanism of action (e.g. antimetabolite, alkylating agent, anthracyclines, mitotinic inhibitors, plant alkaloids, topoisomerase inhibitors, anti-tumour antibiotics, platinum complexes)
      • Immunotherapy
      • Steroids
      • Targeted therapy
      • Hormone therapy
      • CAR-T therapy
    • Dose-intensity (i.e. standard dose or high dose)
    • Cumulative dose (e.g. anthracyclines and alkylating agents)
    • Route of administration (e.g. IV or IT methotrexate)
    • Schedule
  • Radiotherapy 
    • Modality of treatment used (e.g. photons or protons)
    • Treatment technique (conformal or intensity modulation radiotherapy (IMRT))
    • Total dose of radiation
    • Number of fractions (number of treatments) and dose per fraction
    • Size and location of irradiated volume (including the normal tissue and organs within the area)
  • Use of combined modality therapy
  • Haematopoietic stem cell transplantation (HSCT)/Bone Marrow Transplant (BMT) (autologous or allogenic)
  • Gender and sex
  • Age at diagnosis or treatment (e.g. some brain tumour patients who are diagnosed at a young age may receive chemotherapy, and then receive radiotherapy at a later age)
  • Time from diagnosis/systemic anti-cancer therapy/relapse/recurrence
  • Age at relapse/recurrence
  • Site of relapse/recurrence
  • Neurocognitive and physical development stage
  • Genetic predisposition
  • Inherent tissue sensitivities and capacity for normal tissue repair
  • Pre-existing health conditions
  • Healthy lifestyle
  • Psycho-social/socio-economic status

Surveillance

Patients will be followed up by a Long Term Follow Up Team, who will risk stratify whether their long-term follow-up can be transferred back to GP services or should remain under hospital-based follow-up programmes. For some, this may be telephone follow-up, whereas higher risk patients may need to continue attending for scans and reviews for much of their lives. When appropriate this may transfer to adult specialties such as cardiology and endocrinology. Long-term follow-up services will organise the necessary tests required, guided by the International Guideline Harmonisation Group for Late Effects of Childhood Cancer along with local guidelines.

Potential late effects lists for community professionals’ awareness

New or worsening symptoms may need referral back to long-term follow-up services or relevant specialties (with reference to the patient’s cancer treatment history).

  • Scarring
  • Reduced growth and development of bones and soft tissues, and/or asymmetry
  • Reduced sensation/mobility
  • Chronic pain
  • Altered neurocognitive function
  • Impaired immune system function following a splenectomy
  • Endocrine conditions (depending on whether there is pituitary gland or hypothalamic involvement, or whether the thyroid gland is resected)
    • Diabetes insipidus
    • Central hypercortisolism and adrenal crisis
    • Central or primary hypothyroidism
  • Fertility conditions
    • Early menopause
  • Pulmonary conditions
    • Scarring
    • Reduced exercise tolerance
    • Susceptibility to chest infections
    • Breathing difficulties
  • Gastroenterology conditions
    • Scarring
    • Scar tissue forming an intestinal blockage
  • Orthopaedic conditions
    • Deformity
    • Asymmetry
    • Spinal curvature

Depending on treatment type, length and individual risk factors, including genetics and overall health, CYP may be at risk of:

  • Peripheral neuropathy
  • Impaired immune system function
  • Endocrine conditions
    • Thyroid dysfunction
  • Fertility conditions
    • Sub-fertility
      • Premature ovarian insufficiency and premature menopause in women
      • Low testosterone levels and sperm counts in men
  • Cardiac conditions (this includes during pregnancy when regular monitoring may or may not take place)
    • Cardiomyopathy
    • Left ventricular dysfunction
    • Chronic heart failure
  • Pulmonary conditions
    • Scarring
    • Inflammation
    • Acute respiratory distress syndrome
    • Lung failure
  • Renal conditions
    • Reduced renal function
    • Chronic kidney injury
    • Hypertension
  • Orthopaedic conditions
    • Osteopenia
    • Osteoporosis
    • Avascular necrosis
  • Audiology conditions
    • Hearing impairment/loss

The late effects of treatment depend on the age at the time of irradiation, the total dose prescribed, dose per fraction, the volume/area irradiated and the modality of treatment. 

Head and Neck region  

  • Alopecia (permanent or hair thinning)
  • Altered neurocognitive function
  • Chronic fatigue
  • Reduced growth and development of bones and soft tissues, and/or asymmetry
  • Osteoradionecrosis
  • Risk of cerebrovascular accident/stroke
  • Second malignancy - these can be benign tumours such as a meningioma
  • Endocrine conditions (depending on whether the pituitary gland and/or thyroid gland are irradiated)
    • Precocious puberty, delayed puberty
    • Premature ovarian insufficiency, testosterone insufficiency, hypogonadotropic hypogonadism, sub-fertility
    • Diabetes insipidus
    • Growth hormone deficiency
    • Cortisol deficiency/adrenal insufficiency/ATCH deficiency
    • Hypothyroidism or hyperthyroidism (central or primary)
    • Metabolic syndrome
    • Hypothalamic dysfunction
  • Audiology conditions
    • Hearing impairment
    • Hearing loss – particularly high tone
  • Ophthalmology conditions
    • Cataracts
    • Glaucoma
    • Dry eye (particularly if directly irradiated)
    • Worsening visual acuity or visual field)
  • Dental abnormalities
    • Xerostomia
    • Cavities
    • Caries
    • Microdontia (if treated at young age)

Chest/spinal region 

  • Narrowing of the oesophagus
  • Reduced growth and development of bones and soft tissues
  • Possible splenic dysfunction if irradiated
  • Scoliosis
  • Second Malignancy – females may be eligible for early breast screening if breast tissue is irradiated
  • Endocrine conditions (depending on whether the thyroid gland is irradiated)
    • hypothyroidism
    • hyperthyroidism
  • Cardiac conditions
    • Scarring
    • Inflammation
    • Atherosclerosis
    • Coronary heart disease
  • Pulmonary conditions
    • Scarring
    • Inflammation
    • Reduced exercise tolerance
    • Susceptibility to chest infections
    • Breathing difficulties

Abdominal/pelvic region 

  • Growth and development of bones and soft tissues
  • Metabolic Syndrome (including diabetes)
  • Obstetric pre-natal care (increased risk of low birth weight, premature birth and miscarriage)
  • Fertility problems
    • Delayed puberty
    • Premature ovarian insufficiency
    • Erectile dysfunction
    • Infertility
  • Renal/urological conditions
    • Reduced renal function
    • Chronic kidney injury
    • Hypertension
    • Bladder dysfunction
  • Gastroenterology problems
    • Bowel adhesions
    • Irritable bowel syndrome
  • Hepatic dysfunction
  • Splenic dysfunction – ensure patient completes all immunisations
  • Orthopaedic problems such as osteopenia, osteoporosis, osteoradionecrosis

Limb 

  • Reduced growth and development of bone and soft tissues
  • Lymphodema
  • Orthopaedic problems

Survivors of children and young people’s cancer are at a greater risk of second malignancy regardless of the treatment modality received.  Therefore, a heightened awareness to attend for National screening programme is recommended.  If concerns are raised, a timely referral to a specialist team is paramount.

They are also at risk of developing a second cancer within the irradiated volume.  All patients are at risk of developing a skin cancer within the irradiated volume and should be encouraged to use sun protection and monitor moles and freckles within the region.

Children and young people may experience long-term psychological effects including: 

  • Anxiety
  • Depression
  • Post-traumatic stress disorder
  • Suicidal ideation

Other issues that are relevant post-treatment include: 

  • Impact of cancer diagnosis and treatment 
  • Body image 
  • Neuropsychological symptoms such as balance, tremors, changes in behaviour  
  • Education: difficulty in catching up with peers, problems with cognition and memory 
  • Employment 
  • Life skills 
  • Social interaction/peer groups  
  • Relationships, impact on family/significant others 
  • Insurance 

In relation to screening and surveillance, the needs of the transgender community will need to be considered on an individual basis. 

Page last updated February 2026