Here are some core elements of advice:
- Children have direct access back to their Principal Treatment Centre (PTC) or Paediatric Oncology Shared Care Unit (POSCU) 24 hours a day and seven days a week if they become unwell. It is less common (compared to children with leukaemia or non-CNS tumours) for children with brain tumours to have shared care arrangements, and most will have all of their care at the PTC.
- Children with CNS tumours and are at risk of life-threatening infection (sepsis) during treatment. Parents or carers are must phone their treatment centre immediately if their child has a temperature above 38oC, or if they are unwell in any way.
There are also other side effects that need a rapid response.
The Triage Tool Kit for Children's Cancer Services is a national validated assessment tool that can help you assess symptoms and advise when onward referral is needed. - Viral infections can be fatal in immunocompromised children. Please refer to page 5 of the GP Factsheet: Care and Treatment for guidance on viral infections.
- Children and young people receiving long term therapy may be at risk of an unusual type of pneumonia called pneumocystis (Carinii) jiroveci pneumonia (PJP). This infection is due to an organism which may be present in most people’s lungs. In patients who are on immunosuppressive drugs long term, the infection may be activated. This infection is characterised by fever, tachypnoea (fast breathing) and a dry cough. Some chemotherapy regimens may increase the risk of developing PJP. Some children may be on a low dose cotrimoxazole (an antibiotic) two or three days a week, throughout their treatment, to help prevent it occurring.
- Children receiving treatment for brain tumours in the UK (and elsewhere) are frequently placed on long‑term steroid therapy, most commonly dexamethasone, because steroids play a crucial role in managing the effects of the tumour and its treatment. They help by reducing inflammation, decreasing pressure inside the skull, and improving symptoms like headache, vomiting, weakness and behaviour changes.
Stopping long‑term steroids abruptly is dangerous because the body cannot instantly restart making its own cortisol. If the child is vomiting and not keeping down their steroid dose, the family must contact the cancer centre immediately. Look out for worsening headaches, changes in consciousness, worsening neurological symptoms, and / or rapid clinical deterioration. You can utilise the triage tool kit mentioned in bullet 2 to aid your assessment and actions. - Decisions around vaccination during treatment and revaccination following completion of treatment, will be made by the child’s consultant based on the treatment the child has received and the relevant CCLG guideline. Please refer to Page 6 of the GP Factsheet: Care and Treatment for guidance on vaccinations.
- Children with CNS tumours on treatment must not receive any non-steroidal anti-inflammatory drugs (NSAIDs), e.g. ibuprofen, diclofenac, unless discussed with their oncology clinical team.
- Children with a central venous access device in situ should not be given paracetamol as this may mask a temperature. Oral morphine should be used as first line analgesia.
- They must not receive any rectal medication or have a rectal examination.
- All children with CNS tumours are invited to join current national clinical trials relevant to their disease and eligibility criteria.
Participation is completely voluntary and will be discussed in detail by the medical and nursing team. Families who opt not to enter the trial will be offered ‘National Standard of Care’ treatment based on the findings from the previous clinical trial, or where no trial informed ‘Standard of Care’ exists, they will be treated using national guidelines based on the best available evidence. - Families will have a treatment schedule and or flowsheets to show where they are in treatment.
- Treatment may be multi-modal depending on the diagnosis and treatment plan. It could include any or all the following:
- Surgery – examples include biopsy, tumour resection, insertion of VP Shunts, insertion of Ommaya reservoir, insertion of central venous access device
- Chemotherapy and / or immunotherapy (also known as Systemic Ant-Cancer Therapies – SACT)
- Radiotherapy – which could be photon (locally) or most likely proton (at one of the two national centres in London or Manchester)
- Haematopoietic Stem Cell Transplant, which facilitates bone marrow recovery after very high dose chemotherapy
- SACT cycles vary depending on the diagnosis and treatment plan. They may be given as an inpatient or a day patient. Most patients can go home between cycles, but this does depend on several factors.
- Depending on the type of CNS tumour, it’s position in the brain or spinal cord, and the extent of surgery, some children may have significant short and / or long-term physical and cognitive disabilities. They will have a large multi-professional team supporting their care which is likely to include occupational therapists, speech and language therapists, physiotherapists and dieticians. They may require adjustments in the home and at school. They may have access to neuro-rehabilitation services.
- All patients should have access to a named clinical nurse specialist or key worker who is contactable via their PTC or POSCU – please contact them with any queries you may have.
- There is usually weekly contact with their centre or a named health professional throughout the treatment.
- We anticipate and hope that some children with CNS tumours will attend school or nursery and participate in most normal activities, when well enough.
Page last updated: March 2026