Brain tumours are hard to treat. But even this is a harrowing understatement for some forms of the disease.
Diffuse intrinsic pontine glioma (DIPG) is one such example. These rare brain tumours almost exclusively affect children, and they’re invariably fatal.
“Almost all children with DIPG sadly die within a couple of years of diagnosis,” says Professor Chris Jones from the Institute of Cancer Research, London, a Cancer Research UK-funded expert on the disease.
“There aren’t any effective treatments.”
One of the main reasons that the outlook for DIPG is so poor is down to where it grows in the brain. These tumours start in the brainstem, which lies at the base of the brain and hooks up the spinal cord with deeper brain regions. This crucial piece of machinery controls many of the body’s vital processes, such as breathing and our heart beat.
That means surgery – a cornerstone treatment for many cancers – is out of the question. Drugs are also notoriously ineffective for brain tumours, because most are shut out by the protective blood brain barrier.
What do you do when you receive the shocking and unwelcome news that your child has cancer? What do you need? How do you handle it?
What do you do or say when the child of a friend has been diagnosed with cancer? How do you support them best?
What do you say and what should you never, never, EVER say to the parent of a child with cancer?
It is difficult to know what to say even to an adult who has been diagnosed with cancer, let alone to a child or the parent of a child with cancer…
The following was written by the mother of a child with cancer to let everyone know how she felt and what is cool and what is not cool to say to someone whose child has cancer… we hope that it will be of some help to those who have just heard that a friend or family member’s child has just been diagnosed with cancer and the family is about to face the battle of their lives….
Children may not experience the same brain tumour side effects and symptoms as adults.
Because their brains and bodies are still growing, they may experience symptoms and side effects that are unique to their age and stage of development.
Children, adolescents and young adults with brain tumors generally experience various side-effects from brain cancer, including Physical Side Effects, Eating and Nutrition Issues, Changes in Physical Appearance, Cognitive and Emotional Side Effects, as well as Long-Term or Late Effects.
Neurocognitive problems are an unfortunate potential side effect of childhood brain tumours. These can vary widely, and can affect intellectual ability, academic achievement, memory and attention.
Potential problems can be assessed by a pediatric neuro-psychologist who can help determine the types of issues that need to be addressed and their treatments.
During the diagnosis and treatment of a brain tumour, your child may be asking, “When can I go back to school?”
Going back to school after months of treatment can be a cause for celebration.
Children and young adults gain a sense of accomplishment and peer support from school, and long absences and changes in learning abilities can interrupt this positive interaction.
In addition, returning to school is a process that needs care, attention and support by you as a parent, and also by the child’s teachers, school social worker and principal.
Changes in appearance and cognitive abilities can affect self-esteem, create depression and anxiety and lead to frustration. So, although it’s important to return to school, it’s also critical to be aware of what your child may experience and ways you can help.
A risk-factor is anything that affects a person’s chance of getting a disease such as brain cancer.
Different types of cancer have different risk factors, and this article only deals with the potential risk-factors for brain cancer.
Lifestyle-related risk-factors such as diet, body weight, physical activity, and tobacco use play a major role in many adult cancers, but these factors usually take many years to influence cancer risk, therefore logic says that they do not have much of a role in childhood cancers, including brain tumours.
Very few risk factors have been found for brain and spinal cord tumours. There is no clear cause for most of these tumours.
Nutrition is very important for Children with Cancer, because the presence of the tumour as well as the treatments that they undergo play havoc with their immune systems as well as various other systems in their little bodies.
A malignant tumour leads to changes in a child’s metabolism; their system is unable to regulate the expenditure of energy according to the reduced energy intake, leading to an ineffective use of nutrients and contributing to the development of malnutrition. Malnutrition can lead to lower survival rates in children with brain cancer.
Children with cancer, especially those with solid tumours, have reduced body protein stores due to whole body protein breakdown. This may occur as a result of the cancer itself, the treatment they are undergoing for their tumour, or complications of the disease.
Brain tumours are the most common solid tumour in children under the age of 15.
When discovered early enough, brain tumours are usually treatable. Many that are slow-growing are cured with surgery alone. Other types that are faster-growing might need additional treatment with radiation therapy or chemotherapy, or both.
Brain tumours are graded on a scale of 1 to 4, based on how malignant, or cancerous, they are – that is, how abnormal their cells appear under a microscope.
A grade of 1 is the least malignant, and 4 is the most malignant.
A tumour may contain cells of different grades, but it is classified by its highest-grade cells.
The purpose of the brain tumour grading system is to indicate the tumour’s likely growth rate and how likely it is to spread within the brain– information used in predicting outcomes and treatment planning.
Brain tumours are graded and classified by the World Health Organization (WHO).
Grades are often assigned to gliomas, which are tumours that develop in the supporting glial cells of the brain or spine. Gliomas make up about 30% of all brain and central nervous system tumours, and about 80% of all malignant brain tumours.
The most common malignant brain tumours are glioblastomas.
Childhood Brain Tumours are different to Adult Brain Tumours because their brains are still growing and developing.
This means that the side effects that childhood cancer sufferers experience will generally be unique to their age and stage of development.
The side-effects of a brain tumour can be taxing on both the child and the parents, as well as the family and even teachers and classmates.
It is important therefore that you take note of how your child is feeling and what problems they are experiencing and that you talk to them about it – remember though that they may not feel like discussing what they are going through.
It is also important the you discuss any side-effects with their oncology team, who should be able to help or refer you to professionals who can help.
It is vital that Children with Cancer, including Children with Brain Cancer, eat well-balanced, nutritional meals and snacks in order to maintain their weight, rebuild any tissue lost in treatment, and strengthen their immune system and power it to fight against the brain cancer.
The occurrence of malnutrition in children with childhood tumours is multifactorial and develops during therapy for cancer in 40-80% of children. Malnutrition is more commonly seen in patients with advanced neuroblastoma, Wilms tumour, Ewing sarcoma and advanced lymphomas.
Malnutrition is usually more severe with aggressive tumours in the later stages of malignancy. Children who have a poor nutritional status have lower survival rates compared to those with a good nutritional status.
The majority of childhood cancers are treated by combined modality therapy, including surgery, radiotherapy, and antineoplastic schedules commonly providing a
variety of side effects, which may lead a child into a state of nutritional deprivation.
Each of these treatment modalities may produce injuries to major organ systems (liver and pancreas), and a combination of therapies could result in a synergism of adverse effects.
Multimodality therapies combined with the effects of the tumour itself affect nutritional status and damage rapidly growing cells, e.g., in the gastrointestinal tract, causing serious and undesirable symptoms. Read the rest of this entry
Brain tumours can be either primary (develop in the brain) or secondary (cancer from another part of the body spreads to the brain).
A primary brain tumour occurs when abnormal cells form in the tissues of the brain.
Brain tumours are the most common type of tumour that develops in children, and they can affect children of any age.
The brain and spinal cord are closely linked and together they form the Central Nervous System (CNS). The spinal cord connects the brain with nerves in virtually every part of the human body. The brain controls many vital bodily functions.
The brain consists of three major parts:
- The cerebrum is the largest part of the brain. It sits at the top of the head and controls learning, emotions, thinking, speech, reading, writing, and voluntary movement.
- The cerebellum is the lower back part of the brain and lies near the middle of the back of the head. It controls balance, movement and posture
- The brain stem is the lowest part of the brain and is situated just above the back of the neck. It connects the brain to the spinal cord and controls heart rate, breathing, and all the muscles you use to walk, talk, hear, see, and eat
Malignant brain tumours grow rapidly and are likely to spread into other areas of the brain very quickly. When a tumour grows into or creates pressure on part of the brain it may cause that part of the brain to stop functioning the way it should.