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My Child Has a Kidney Tumour Information and Support for Parents

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My Child Has a Kidney Tumour Information and Support for Parents My child has a kidney tumour Information and support for parents Bethany, diagnosed with Wilms’ tumour aged 4, with her dad Alberto www.cclg.org.uk Contents About this booklet 3 Childhood kidney tumours 4 Types of childhood kidney tumours 5 Most common types of kidney cancer 5 Other childhood kidney cancers 5 Proportion of childhood kidney cancers 6 Signs and symptoms of kidney cancer 7 Causes 7 Diagnosis 8 Edited by Professor Kathy Pritchard-Jones, Professor of Paediatric Tests and scans 8 Oncology, Great Ormond Street Hospital and UCL Institute Treatment 9 of Child Health, on behalf of the CCLG Renal Tumours Special Interest Group. Produced in conjunction with Bethany’s Wish – Wilms’ tumour 10 Wilms’ Tumour Charity UK and the CCLG Publications Committee, Diagnosis of Wilms’ tumour 11 comprising multiprofessional experts in the field of children’s Commonly used staging for Wilms’ tumour 12 cancer. Editorial support was provided by Elizabeth Rapley, PhD Treatment of Wilms’ tumour 13 of Edge Medical Communications Bilateral Wilms’ tumour 14 Relapsed Wilms’ tumour 14 Thank you to all those who contributed to this booklet. Clinical trials for Wilms’ tumour 15 Side effects of treatment 15 What happens after planned treatment is finished? 16 CCLG makes every effort to ensure that information provided is Living with a single kidney 16 accurate and up-to-date at the time of printing. We do not accept responsibility for information provided by third parties, including Other childhood kidney tumours 17 those referred to or signposted to in this publication. Information Clear cell sacrcoma of the kidney (CCSK) 18 in the publication should be used to supplement appropriate Malignant rhabdoid tumour of the kidney (MRTK) 19 professional or other advice specific to your circumstances. Renal cell carcinoma (RCC) 20 For information about the sources used to put this publication Mesoblastic nephroma 20 together, please contact us. Other very rare types of kidney cancer in children 21 Publication of this booklet was funded by Bethany’s Wish – Wilms’ Coping with kidney tumours 22 Tumour Charity UK and CCLG. Talking to your child 23 Coping with tests 23 © CCLG and Bethany’s Wish 2016 You and your family 24 Seeking information 24 Published: August 2016 Feelings and emotions 25 Next review due: August 2019 Looking after yourself 26 Brothers and sisters 27 Children’s Cancer and Leukaemia Group Going home 28 0116 252 5858 Reducing the risk of infection 29 [email protected] School 30 www.cclg.org.uk After treatment, and follow-up 32 If your child cannot be cured 33 ChildrensCLG Palliative care 33 CCLG_UK Further information 34 Useful organisations 34 Registered Charity number 286669 Glossary 35 About this booklet About this booklet Although many children with cancer can be cured it is still devastating to hear that your child has cancer. This booklet provides general information about kidney cancer (renal tumours) that occur in children. Cancer and its It is designed to provide a reference to the treatment can have a information you have been given already, or big impact on you and will be given in the future, and will act as a your child’s life. It’s reminder of discussions you have had with important to have your child’s treatment team. Whilst this support to help information may answer some of your you through questions, your child’s specialist doctor this time. and/or nurse will give you more detailed information, and your child’s individual case should always be discussed with the team of healthcare professionals caring for your child. This booklet contains information about the different types of childhood kidney cancer, the treatments that are used and their possible side effects. It also discusses how a cancer diagnosis can affect you, your child and the rest of the family. You may also find the CCLG booklet ‘Children and Young People with Cancer: A Parent’s Guide’ helpful. 3 Childhood kidney tumours Childhood kidney cancers, also called renal tumours, are a group of different types of cancer that develop in the tissues of the kidneys. 4 Childhood kidney tumours There are two kidneys located on either side of the spine at the bottom of the rib cage. The kidneys’ major function is to filter and clean the blood by removing excess fluids and waste products, which are then excreted in the urine. Other key functions include keeping the body’s salts in balance and controlling red blood cell production and blood pressure. Types of childhood ever seen in children. Fewer than 2% of all childhood kidney cancers kidney tumour are renal cell carcinomas. If this type Around 5% In the UK almost 1700 children of cancer occurs in children, it is a of childhood are diagnosed with cancer each different ‘subtype’ and has different cancers are year. About 5% of these, or around features to the common adult renal kidney 80-85 children, are diagnosed with cell carcinoma. kidney cancer. There are a number of tumours different types of childhood kidney Other childhood cancer but Wilms’ tumour is by far kidney cancers the most common. Other types of childhood kidney About 90% of cases of kidney cancer cancer are even more uncommon. in children are Wilms’ tumours. Primitive neuroectodermal tumour Malignant rhabdoid tumour of (PNET) of the kidney accounts for just the kidney (MRTK) and clear cell 1% of new cases. However, as it was sarcoma of the kidney (CCSK) each only recognised as a distinct type of account for 3–4% of cases. Both of cancer in the 1990s, this percentage these cancers were initially thought may be an underestimate. to be higher risk variants of Wilms’ tumour but now it is known that they Other types of childhood are different cancers. kidney cancer, including rhabdomyosarcoma of the kidney, Most common types desmoplastic small round cell tumours of the kidney, primary of kidney cancer renal synovial sarcoma, and The most common type of kidney anaplastic sarcoma of the cancer that occurs in adults is renal kidney, account for 2-3% of cell carcinoma, but this is hardly cases between them. 5 D L I H C L L A O H My child has a kidney tumour O D C A N Proportion of childhood kidneyC cancers E In addition to malignant tumours, several types ofR benign (non-cancerous) kidney tumours also occur in childhood. The most common of these is mesoblastic nephroma. This is a usually benign tumour that is often diagnosed during pregnancy, when it is seen on an ultrasound scan. It is usually treated with surgery only. 5% ANCER D C 5% of childhood O O 5% cancers are H D kidney tumours L I H C L L A Childhood kidney cancer Childhood kidney cancers: Wilms’ tumour 90% Malignant rhabdoid tumour of the kidney 3-4% Clear cell sarcoma 3-4% Renal cell carcinoma 2% Other types 2% 6 D L I H C L L A O H O Childhood kidney tumours D C A N C Signs and symptoms of kidney cancer E R Signs of childhood kidney tumours your child’s doctor if your child include a lump in the tummy, which has any of these symptoms. Most children can often be painless, blood in are very well at 5% the urine (called haematuria) and When a kidney cancer spreads diagnosis, and have fever. Children with kidney cancer (known as metastasis or stage very little in the may sometimes have signs and 4 disease), this is usually to the symptoms of high blood pressure lungs or liver. Metastases may way of symptoms. (hypertension), such as headache, only be picked up on x-rays or A tummy lump is feeling tired (lethargy), chest scans. Occasionally, they may often identified pain, and problems with seeing or cause a cough or trouble with incidentally. breathing. You should check with breathing, or pain. Causes As with most childhood cancers, the causes of most childhood kidney cancers are unknown. It is not infectious and cannot be passed on to other people. There are certain factors (risk factors) that increase the chance of kidney cancer occurring in some children, such as inherited (genetic) factors. These genetic risk factors are different depending on the type of kidney cancer. Genetic factors only account for a small number of children with kidney cancer. 7 My child has a kidney tumour Tests and scans Diagnosis a lump in the kidney, your child asleep. Doctors can then examine will need CT and/or MRI scans the tissue under a microscope to Kidney cancer is diagnosed through to check the appearance of the confirm the pathological diagnosis. a combination of tests on the kidneys, and to see if there are any A pathological diagnosis can help kidneys and blood. The first of these signs of cancer spreading to the to determine what type of kidney is a physical examination to check liver or chest – this is called tumour cancer your child has and can general signs of health and look for staging. Anaesthetic is often support your child’s doctors in signs of disease, such as lumps or needed to completed these tests. determining the best course anything else that seems unusual. An x-ray may also be taken. The of treatment. This is coupled with questions about diagnosis can often be made with the child’s medical history. the aid of such imaging. Doctors will also check how the kidneys are working (kidney If kidney cancer is suspected, In the UK, a biopsy is usually function) by putting a dipstick in the next test is an ultrasound performed. A small sample of a urine sample to check for protein examination that can be done the lump is removed by a needle or blood, and by measuring the without anaesthetic.
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