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.
- Children with cancer 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.
- 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 solid 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 solid 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 may be tumour excision, amputation, limb sparing surgery, central venous access device insertions.
- Chemotherapy and / or immunotherapy (also known as Systemic Ant-Cancer Therapies – SACT)
- Radiotherapy – which could be photon (locally) or proton (at one of the two national centres in London or Manchester)
- Transplant – which may be organ transplant or 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.
- 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, shared care hospital or a named health professional throughout the treatment.
- We anticipate and hope that children will attend school or nursery and participate in most normal activities, when well enough.
Page last updated: March 2026