What are other rare childhood tumours?
A small number of children are diagnosed with tumours that do not fall into the main childhood cancer groups. These rare tumours can develop in almost any part of the body, including the endocrine system, digestive system, thyroid gland, adrenal glands, chest, skin or other organs.
Because these tumours are so varied, each one behaves differently and requires highly specialised, individualised treatment.
Signs & Symptoms
Symptoms vary widely depending on where the tumour forms and may include:
- a lump or swelling
- persistent tummy pain or bloating
- changes in hormone levels (endocrine tumours)
- unusual weight loss or gain
- cough or breathing changes (chest tumours)
- skin changes or moles that change shape or colour (rare skin tumours)
- bowel or bladder changes
- unexplained tiredness or fevers
These symptoms can also be caused by many common childhood conditions and do not necessarily mean cancer.
How is it Diagnosed?
Diagnosis depends on the tumour location and type. Children are referred to a specialist centre for tests such as:
- ultrasound, MRI or CT scans – to locate the tumour and assess its size
- PET scans – sometimes used to detect active cancer cells
- blood and urine tests – including hormone tests for endocrine tumours
- biopsy – to confirm the diagnosis and identify the tumour type
- genetic or molecular tests – increasingly used to guide treatment decisions
Each tumour type is assessed by a multidisciplinary team to plan the most suitable care.
Treatment
Treatment varies depending on the tumour type, but may include one or more of the following:
-
Surgery
Often the first step for solid tumours, aiming to remove as much of the tumour as safely possible. -
Chemotherapy
Used for tumours that respond to anti-cancer medicines, either before surgery (to shrink the tumour) or after surgery (to reduce the risk of it returning). -
Radiotherapy
May be used if surgery cannot fully remove the tumour or if the tumour is known to respond well to radiation. -
Targeted Treatment
Some tumours have specific genetic features that can be treated with targeted medicines designed to act directly on cancer cells. -
Immunotherapy
Used for certain rare tumours, such as melanoma, to help the immune system recognise and attack cancer cells. -
Hormone Treatment
Used for endocrine tumours where hormone production needs to be blocked, reduced or controlled. -
Clinical Trials
Because rare tumours behave differently, some children may be offered new treatments through research studies.
Supportive Care
Your child may receive:
- medicines for pain, sickness or hormone-related symptoms
- antibiotics or antifungals
- physiotherapy or occupational therapy
- nutritional support
- psychological and emotional support
- school and activity guidance
Supportive care plays a key role in maintaining comfort and wellbeing throughout treatment.
Monitoring Response
Scans, blood tests, hormone levels and other specialised assessments are used to monitor how well treatment is working and to guide adjustments
Outlook & Support
Outcomes vary widely depending on the tumour type and how early it is diagnosed. Many rare childhood tumours respond well to treatment, and long-term survival is good for a significant number of children.
During treatment your child will be cared for by a specialist children’s cancer team. Help is available with managing side effects, school, emotional wellbeing and practical concerns.
Lennox Children’s Cancer Fund will support your whole family from diagnosis, through treatment and beyond.
Key Facts
- Common Age: Varies by tumour type
- Survival: Depends on tumour type and stage; many have good long-term outcomes
- How common? Extremely rare compared to other childhood cancers
