If you have ever wondered WHY I do so much fundraising for the various cancer councils and brain research institutions, apart from having had my own brain tumour, this is a little bit of information about Brain Tumours
Brain tumours affect adults of all ages. There are almost 1,400 new cases of malignant brain tumours in Australia and many more benign brain tumours that can be just as deadly if the tumour is in a vital area of the brain. More than 1,200 people die each year from malignant and benign brain tumours.
Brain cancer is also one of the few cancers which occur in children, with 115 new cases a year among children.
Children under - 10
Brain cancer is the leading cause of cancer death in children aged under-10 accounting for one third of all cancer deaths in this age group.
About 57 children aged under-10 are diagnosed with brain cancer per year and about 26 children die in this age group per year.
Children under - 15
Brain cancer is the leading cause of cancer death in children aged under 15 years, accounting for one third of cancer deaths in this age bracket
About 75 children under-15 are diagnosed with brain cancer per year, and about 33 die per year
Brain cancer is the leading cause of cancer death in people aged 0-39 years with an average of 120 deaths per year
Brain cancer is the second leading cause of cancer death in females aged 0-44 years (behind breast cancer) with an average of 69 deaths per year
Brain cancer (all ages)
Each year about 1400 cases of malignant brain cancer are diagnosed in Australia and about 1100 people die from the disease each year
One person is diagnosed with brain cancer every six hours and one person dies from malignant brain cancer every eight hours in Australia
The most common malignant brain cancer, high grade glioma (HGG), is almost 100% fatal
Brain cancer is one of the most under-studied of all cancers yet receives very little research funding
No significant improvement has been made in survival rates in almost two decades
Brain cancer is the leading cause of cancer death in children
Brain cancer strikes adults and children alike, with the incidence highest in adults in the prime of life
No risk factors have been identified and no screening procedures are in place
Brain cancer carries the highest individual financial burden of all cancers with an average cost more than 5 times higher.
Difference between benign & cancerous brain tumours is aggressiveness.
Worldwide, colloid cysts represent only one half to one percent of all brain tumours.
Brain cancer remains to be one of the most incurable forms of cancer.
Cancer is a word not a sentence
Gathering information about brain tumours can help you understand your options and, in the process, feel more in control.
Brain Tumour Alliance Australia (BTAA) is the only national brain tumour patient and caregiver organisation in Australia.
Ependymoma is the third most common primary brain tumour in children and are 5% of tumours in adults
Some types of Brain tumour are -
Medulloblastomas arise from primitive neuro ectodermal tissue, or PNET. (PNET is a general term for a collection of many different brain tumours which arise from undeveloped brain cells.) Medulloblastomas are usually located in the cerebellum and are fast growing and highly malignant. They frequently spread, invading other parts of the central nervous system via the spinal fluid. Medulloblastomas account for the largest percentage of paediatric brain cancers. It is more common in boys than girls; it usually occurs between the ages of 2 and 6 (only 30% of medulloblastomas occur in adults); frequently spreads.
Ependymomas arise from the cells that line the internal surfaces of the brain, thus, they are gliomas. The tumours arise from "ependyma", cells that line the fluid spaces of the brain and spinal cord. Ependymomas located in the cerebral hemispheres occur primarily in children and adolescents. Although these tumours are capable of malignant behaviour, they are almost always benign.
Astrocytomas arise from brain cells which form part of the supportive system of the brain, in particular, cells called "astrocytes" for their star shaped appearance. This tumour is usually slow growing and many are considered "curable". Astrocytomas are often cystic, in which case they are particularly easy to remove completely.
OPTICAL NERVE GLIOMA
These are slow growing tumours which form along the optic nerves. They usually occur children under the age of 10. The common cell type is pilocytic astrocytoma.
BRAIN STEM GLIOMA
These tumours, located in the brain stem, can be either slow or fast growing. Depending on the type of supporting tissue from which they arise, they can be either astrocytomas, anaplastic astrocytomas, glioblastoma multiforme, or a mixed tumour. In general, brain stem tumours are more common in children than they are in adults. Surgery is usually not possible in these tumours, and radiation and chemotherapy must be used instead.
Slow growing tumours which arise from cells which make the myelin that insulates nerve fibres. They are located in the hemispheres of the brain, especially the frontal and temporal lobes, and in children are more common in the thalamus.
Usually slow growing, rarely malignant. These tumours can be located anywhere in brain, but are most often found in the temporal lobe. They arise from ganglia (a ganglion is a group of nerve cells). They occur most frequently in children and young adults.
Benign, congenital tumours. They are usually cystic and found primarily in children and adolescents.
PINEAL REGION TUMOURS
The pineal gland is located in the posterior portion of the third ventricle. The most common tumour of the pineal region is the germinoma. Germinomas (germ cell tumours) represent over one-third of the tumours in this region. Germinomas of the pineal region are most common in teen-agers. Additional tumours found in this area include other embryonal type tumours, teratomas, astrocytomas, pineocytomas, and pineoblastomas.
Get behind Dr Charlie Teo and Cure For Life in their mission to find a cure for brain cancer http://www.cureforlife.org.au/
We need more research into the cause and treatment of Brain Tumors. Get behind your local BT Fund
Some of the challenges faced by family caregivers are documented in the literature. Caregivers report high levels of stress and poor physical and emotional health, as well as career sacrifices, monetary losses, and workplace discrimination. In the setting of a brain tumour, family caregivers face special challenges posed by the neurocognitive and neurobehavioral effects. Brain tumour patients make up a unique diagnostic and treatment group. The diagnosis is catastrophic, often made after a sudden symptom onset such as a seizure or significant change in cognition. Following the sentinel event, ongoing limitations in physical and cognitive function and quality of life are prevalent and bring additional coping challenges for family caregivers.
What happens after treatment is over?
After treatment is over, most patients are monitored for tumour recurrence on a regular basis with MRI or CT scans. Scans are typically done on a three-month, six-month, or yearly basis, depending on the tumour type
Can rehabilitation help brain tumour patients?
Yes. Patients with physical symptoms such as hemiparesis (numbness, weakness, or paralysis on one side of the body), difficulty with balance, visual disorders, or bowel and bladder dysfunction may benefit from one of several forms of treatment available at rehabilitation centres. Physical and occupational therapists are experts in rehabilitation. Occupational therapists teach patients how to manage their side effects so that they can go about their lives and perform daily activities. Physical therapists help patients improve their walking, balance, and strength. Every person with a brain tumour deserves to function optimally, and so patients need to be evaluated for the appropriate rehabilitation and treatment.
Fatigue can vary from a feeling of tiredness to total exhaustion. It can limit a person to accomplishing no more than one activity per day. Fatigue is not relieved by a good night’s sleep. It can last for a short period of time or for many years. It can be the initial symptom of the brain tumour and is a common side effect of surgery, radiation therapy, and chemotherapy. Fatigue is considered one of the most debilitating symptoms and side effects of a brain tumour because it limits a person’s degree of physical activity.
The most common way to manage fatigue is to understand how and when fatigue occurs and to plan daily activities according to energy levels. Most people experience high energy at certain times of the day. By becoming aware of personal energy level patterns, patients can perform their daily activities at these times. They can also learn to conserve energy and develop ways to efficiently use their limited amount of energy. Organizing their home and time, using devices such as grab rails and extension handles to assist with basic tasks, asking for assistance from others, and resting when necessary are some ways to manage fatigue
Medical treatment for fatigue has shown varying results, depending on the cause. A low red blood cell count (anaemia) is one cause of fatigue. For this, a patient may be put on medication to help produce more red blood cells. When a patient experiences severe fatigue, the doctor may prescribe a drug to stimulate alertness. Studies using methylphenidate or modifinal show varying results, but may be worth considering.
A brain tumour and/or its treatment can cause changes to a person’s cognitive (thinking) abilities, behaviour, and emotions. The extent of changes can vary considerably from person to person and may affect a patient’s ability to work or go about his/her daily life
Some causes of behavioural and personality changes include tumour size, type, and location; side effects of surgery, radiation therapy, and chemotherapy; side effects of medications; and the patient’s psychological reaction to the diagnosis of a life-threatening illness
Cognitive changes can include difficulty speaking, writing, and/or reading; being easily distracted, confused, and disoriented; difficulty doing more than one task at a time; short-term memory loss; slowed thinking; trouble with problem solving; and poor judgment. A combination of medication, modifications in behaviour, and simple lifestyle adjustments may help the person dealing with these issues and symptoms. For example, a person who has difficulty with multitasking can avoid confusion and frustration by limiting themselves to doing one thing at a time
Emotional and personality changes may include depression, irritability, anxiety, mood swings, obsessive-compulsive tendencies, disinhibition, and withdrawal. Troublesome symptoms such as lack of sleep, forgetfulness, and chronic pain can play a role in making things worse by causing irritability and frustration. Sharing feelings with family and friends is essential for any person dealing with a life-threatening illness. Psychological counselling, spiritual help, and support groups can help tremendously. An antidepressant or other medication may be prescribed.
In all cases, it is important to notify your medical team about behavioural changes. Chronic illness of a family member can cause emotional distress to the entire family. Talk with your treatment team, as there may be help and treatment available.
A neuropsychologist is a licensed psychologist who has specialized training and experience studying how the brain functions. A neuropsychologist does testing and research to attempt to explain the relationship between brain activity and behaviour and to understand how functions within the brain influence thinking, learning, and emotions. He or she studies the impact that brain damage has on a person’s functioning and abilities. A neuropsychologist can help brain tumour patients and survivors evaluate changes resulting from their brain tumour or treatment and can help develop a plan for rehabilitation.
A neuropsychologist can help some brain tumour patients evaluate changes caused as a result of their tumour and develop a rehabilitation plan. Neuropsychological testing is the method used to identify changes in the cognitive functioning of a patient. A series of tests conducted by a licensed neuropsychologist can assess the patient’s emotional state, and mental and behavioural abilities. This evaluation helps identify the areas of the brain that have been affected by the tumour. Although neuropsychologists are often consulted after treatment, it may be preferable to have a neuropsychological evaluation before treatment. That way, a more accurate comparison can be made of changes that may occur following treatment.
After analysing the results of the tests, the neuropsychologist can make recommendations for rehabilitation, therapy, or medications to help the patient regain as much function as possible. A neuropsychologist may offer training in compensation techniques for the mental and/or physical abilities that cannot be fully regained. Neuro-oncologists or neurologists can give a referral to a neuropsychologist. Referrals can also be found in rehabilitation settings.
A family in which one member has a brain tumour is constantly challenged by changing circumstances, and yet must also strive to be caring and supportive throughout the entire process of diagnosis, treatment, and recovery.
Being aware of some of the different ways in which your illness may affect you and your loved ones can help in finding the best ways to cope with these changes. People may respond in various ways. Common reactions can include physical symptoms such as fatigue, nervousness, impaired sleep, or appetite; emotional reactions such as fear, shock, depression, anger, guilt, mood swings, or crying; cognitive symptoms such as difficulty concentrating or forgetfulness; and spiritual responses such as searching for meaning, or an increase or decrease in spirituality. These are all normal responses to stress. Recognizing these common issues can guide everyone struggling with the challenges brought about by a brain tumour diagnosis.
Brain tumour patients will often have a primary caregiver, the main person who assists and cares for the patient’s needs. Communication between family members may become more difficult with regard to addressing changes in roles and responsibilities. How a family copes with these changes is affected by the ability to communicate. Families may need to identify outside sources of support to assist with this process.
Identifying individual family members and friends who are committed to helping can provide needed support to the patient and help with difficult transitions. Including others can promote a sense of community and reduce the feeling of being alone for caregivers and patients. Creating new, flexible solutions to changing circumstances can serve as a way to help cope with the changing nature of the illness. Recognizing that the old way of doing things may no longer be useful can help families to come up with new and innovative ways of dealing with change.
It is difficult to summarize a single approach to coping, because every patient, family, and disease is different. But it’s important to recognize how stress is affecting you. If your response to stress feels extreme or persists over time, consider consulting your doctor or a counsellor.
Contact your local Cancer Council for support and information