COPING
Coping with your diagnosis
It can be very difficult coping with a diagnosis of a brain tumour both practically and emotionally. At first you are likely to feel very upset, frightened and confused. Or that things are out of your control. It is very important to get the right information about the type of brain tumour you have and how it is best treated. People who are well informed about their illness and treatment are more able to make decisions and cope with what happens.
Don't be afraid to ask your doctor and nurses questions if you don't understand something. It isn’t always easy to remember what you want to ask. Or to remember what you have been told. It helps to write questions down - you can use the questions for your doctor pages for suggestions. You may want to print off pages of the website to take with you when you see the doctor. And don’t be worried about taking notes when you are given answers to your questions.
Brain tumours are also frightening because some people die from them. But there are lots of differenttypes of brain tumours and the likely outcome varies a great deal, depending on the type and grade of tumour that you have. Many are curable. Some are controllable for years. Others can be treated, but are aggressive and are very likely to come back.
Not everyone wants to know if their tumour is likely to cause their death or how long they are likely to live (their prognosis). If you do, (and you know what type of brain tumour you have) there is a page on the likely outcome of brain tumours in our treatment section that may help to give you an idea of what to expect. It can only ever be a guide. No statistics can tell you exactly what will happen to you. If you do want to know about your likely prognosis, the best person to discuss this with is your cancer specialist.[19]
How a brain tumour may affect you physically
A brain tumour and its treatment may cause physical changes in your body. These changes can be very difficult to cope with and may affect the way you feel about yourself. Such body changes can affect your self esteem and the way you relate to other people, especially close family and friends. Our page about getting better after treatment for brain tumours discusses possible changes and how to cope with them.
Another problem you may have to cope with is feeling very tired and lethargic a lot of the time, especially for a while after treatment or if the brain tumour is advanced. There is information aboutfatigue and cancer and treating cancer fatigue in the section about coping physically with cancer.
If you are having a sexual relationship, one or all of these changes may affect your sex life. There is information about how cancer can affect your sex life in the coping with cancer section.[26]
It can be very difficult coping with a diagnosis of a brain tumour both practically and emotionally. At first you are likely to feel very upset, frightened and confused. Or that things are out of your control. It is very important to get the right information about the type of brain tumour you have and how it is best treated. People who are well informed about their illness and treatment are more able to make decisions and cope with what happens.
Don't be afraid to ask your doctor and nurses questions if you don't understand something. It isn’t always easy to remember what you want to ask. Or to remember what you have been told. It helps to write questions down - you can use the questions for your doctor pages for suggestions. You may want to print off pages of the website to take with you when you see the doctor. And don’t be worried about taking notes when you are given answers to your questions.
Brain tumours are also frightening because some people die from them. But there are lots of differenttypes of brain tumours and the likely outcome varies a great deal, depending on the type and grade of tumour that you have. Many are curable. Some are controllable for years. Others can be treated, but are aggressive and are very likely to come back.
Not everyone wants to know if their tumour is likely to cause their death or how long they are likely to live (their prognosis). If you do, (and you know what type of brain tumour you have) there is a page on the likely outcome of brain tumours in our treatment section that may help to give you an idea of what to expect. It can only ever be a guide. No statistics can tell you exactly what will happen to you. If you do want to know about your likely prognosis, the best person to discuss this with is your cancer specialist.[19]
How a brain tumour may affect you physically
A brain tumour and its treatment may cause physical changes in your body. These changes can be very difficult to cope with and may affect the way you feel about yourself. Such body changes can affect your self esteem and the way you relate to other people, especially close family and friends. Our page about getting better after treatment for brain tumours discusses possible changes and how to cope with them.
Another problem you may have to cope with is feeling very tired and lethargic a lot of the time, especially for a while after treatment or if the brain tumour is advanced. There is information aboutfatigue and cancer and treating cancer fatigue in the section about coping physically with cancer.
If you are having a sexual relationship, one or all of these changes may affect your sex life. There is information about how cancer can affect your sex life in the coping with cancer section.[26]
Recovery for children with brain tumours
Research into children's treatment side effects
Brain tumours and their treatment can cause physical and mental changes. In some cases, these are long lasting or permanent. We can't really give an accurate idea of how many children are affected in these different ways. It will depend on the type, size and position of the tumour and how exactly it was treated. We don't have the full picture of the effects in adulthood of surviving a brain tumour because many of the therapies used have been introduced since the 1970's and so the oldest children treated will only be in their 20's or 30's.
Treatments are continuing to be improved through years of research. Researchers and specialists who work with children are very aware of the possibility of treatments causing long term side effects. They do everything they can to reduce this risk. Research has shown that very young children (under 3) who have radiotherapy to the brain are more likely to have changes to their brain function afterwards. This may cause changes in their level of intelligence or ability to learn. It is because their central nervous systems are not yet fully developed at this age. Many young children with brain tumours now have chemotherapy to keep their tumour under control until they are old enough to have radiotherapy safely. As this is a recent change, we don't know the full impact of this yet. We hope that the number of children permanently affected by their treatment will soon fall.
The Department of Health, Macmillan Cancer Support and NHS Improvement have set up the National Cancer Survivorship Initiative (NCSI) to look at issues people have when they finish treatment. They are looking at several different areas including the long term side effects of treatment and identifying people at risk.[20]
Any physical problems will depend on where the brain tumour was. The tumour and treatment can leave children or adults with a weakness of an arm or leg, or on one side of the body. A survey from the National Cancer Institute (NCI) of the USA estimates that more than half of the children treated for a brain tumour will have some sort of physical problem, for example limb weakness, poor balance or shakes (tremors). If your child has this type of problem, physiotherapy and other rehabilitation strategies can help. The brain can 'rewire' itself to some extent and your child's physical strength and ability may improve in time.
Other physical problems can come and go. According to the same NCI survey, about 1 in 4 children have fits (seizures) or blackouts occasionally after treatment for a brain tumour. And about 1 in 3 have headaches or migraines.
Other physical problems are rarer and will depend on the type and position of the tumour. A smaller number of children can lose the sight of one or both eyes, or have hearing difficulties.
To keep them as healthy as possible, the Scottish Intercollegiate Guidelines Network (SIGN)guidelines recommend that all childhood cancer survivors should have advice on healthy eating, exercise and the importance of not smoking.[20]
There are guidelines for the monitoring of all children who've had cancer. They should all have their height, weight and body mass checked regularly until they reach their adult height.
If your child had radiotherapy to the pituitary gland or nearby areas, the brain may not make enough growth hormone afterwards. If your child has a shortage of growth hormone, injections of man made growth hormone can correct the imbalance. The levels of other hormones may also change and your child may be monitored by a paediatric endocrinologist.
Radiotherapy to the spine can affect adult height. Unfortunately there is little that can be done about this. Talk to your child's specialists if you are concerned. They may be able to reassure you or give you an idea of what to expect.[20]
Early or late puberty and fertility problems
Radiotherapy and chemotherapy can affect both puberty and fertility. You may not know if your child has been affected until they reach the age at which you would expect puberty to begin. This will also be monitored at your child's check ups. Talk to your child's specialist if you are worried. They may be able to reassure you that the chances of problems are small in your child's case. If your child does develop problems, they may be offered hormone replacement to make up for any loss of sex hormone production caused by treatment.
Girls who have had radiotherapy to the head sometimes have early puberty and they will have monitoring for signs of this during their check ups.[20]
Some children have problems with learning after a brain tumour. Some of the changes will be due to the tumour and treatment. Some will be due to the stress of the whole experience and missing out on normal life - going to school and keeping up with friends. It is bound to be a bit difficult for both the child and parents when the time comes to try to get back to normal.
Sadly, many children are permanently affected by their treatment. They may have a drop in their IQ scores. They may not cope as well with schoolwork as they did before. They may have problems with
Some children have behavioural problems. This can be due to the stresses and strains of illness and treatment and will gradually improve in some children. For other children, it may be due to the part of the brain involved or related to changes in the brain after the tumour and treatment and can be more long lasting.
SIGN recommend that children who need radiotherapy to the head should have a mental and educational assessment before they start treatment and then yearly afterwards. The assessment is carried out by an educational psychologist. This can help you to find out how your child is likely to manage at school and to identify what extra educational needs there are (if any). If necessary, your child can have a statement of extra educational needs. This sets out what support your child needs with education and identifies the support that will be provided. The statement should be reviewed every so often to make sure that what is being provided is still what your child needs.[20]
Brain tumours and their treatment can cause physical and mental changes. In some cases, these are long lasting or permanent. We can't really give an accurate idea of how many children are affected in these different ways. It will depend on the type, size and position of the tumour and how exactly it was treated. We don't have the full picture of the effects in adulthood of surviving a brain tumour because many of the therapies used have been introduced since the 1970's and so the oldest children treated will only be in their 20's or 30's.
Treatments are continuing to be improved through years of research. Researchers and specialists who work with children are very aware of the possibility of treatments causing long term side effects. They do everything they can to reduce this risk. Research has shown that very young children (under 3) who have radiotherapy to the brain are more likely to have changes to their brain function afterwards. This may cause changes in their level of intelligence or ability to learn. It is because their central nervous systems are not yet fully developed at this age. Many young children with brain tumours now have chemotherapy to keep their tumour under control until they are old enough to have radiotherapy safely. As this is a recent change, we don't know the full impact of this yet. We hope that the number of children permanently affected by their treatment will soon fall.
The Department of Health, Macmillan Cancer Support and NHS Improvement have set up the National Cancer Survivorship Initiative (NCSI) to look at issues people have when they finish treatment. They are looking at several different areas including the long term side effects of treatment and identifying people at risk.[20]
- Physical problems
Any physical problems will depend on where the brain tumour was. The tumour and treatment can leave children or adults with a weakness of an arm or leg, or on one side of the body. A survey from the National Cancer Institute (NCI) of the USA estimates that more than half of the children treated for a brain tumour will have some sort of physical problem, for example limb weakness, poor balance or shakes (tremors). If your child has this type of problem, physiotherapy and other rehabilitation strategies can help. The brain can 'rewire' itself to some extent and your child's physical strength and ability may improve in time.
Other physical problems can come and go. According to the same NCI survey, about 1 in 4 children have fits (seizures) or blackouts occasionally after treatment for a brain tumour. And about 1 in 3 have headaches or migraines.
Other physical problems are rarer and will depend on the type and position of the tumour. A smaller number of children can lose the sight of one or both eyes, or have hearing difficulties.
To keep them as healthy as possible, the Scottish Intercollegiate Guidelines Network (SIGN)guidelines recommend that all childhood cancer survivors should have advice on healthy eating, exercise and the importance of not smoking.[20]
- Lack of growth
There are guidelines for the monitoring of all children who've had cancer. They should all have their height, weight and body mass checked regularly until they reach their adult height.
If your child had radiotherapy to the pituitary gland or nearby areas, the brain may not make enough growth hormone afterwards. If your child has a shortage of growth hormone, injections of man made growth hormone can correct the imbalance. The levels of other hormones may also change and your child may be monitored by a paediatric endocrinologist.
Radiotherapy to the spine can affect adult height. Unfortunately there is little that can be done about this. Talk to your child's specialists if you are concerned. They may be able to reassure you or give you an idea of what to expect.[20]
Early or late puberty and fertility problems
Radiotherapy and chemotherapy can affect both puberty and fertility. You may not know if your child has been affected until they reach the age at which you would expect puberty to begin. This will also be monitored at your child's check ups. Talk to your child's specialist if you are worried. They may be able to reassure you that the chances of problems are small in your child's case. If your child does develop problems, they may be offered hormone replacement to make up for any loss of sex hormone production caused by treatment.
Girls who have had radiotherapy to the head sometimes have early puberty and they will have monitoring for signs of this during their check ups.[20]
- Educational problems
Some children have problems with learning after a brain tumour. Some of the changes will be due to the tumour and treatment. Some will be due to the stress of the whole experience and missing out on normal life - going to school and keeping up with friends. It is bound to be a bit difficult for both the child and parents when the time comes to try to get back to normal.
Sadly, many children are permanently affected by their treatment. They may have a drop in their IQ scores. They may not cope as well with schoolwork as they did before. They may have problems with
- New learning - skills or ideas
- Poor short term memory
- Problem solving
Some children have behavioural problems. This can be due to the stresses and strains of illness and treatment and will gradually improve in some children. For other children, it may be due to the part of the brain involved or related to changes in the brain after the tumour and treatment and can be more long lasting.
SIGN recommend that children who need radiotherapy to the head should have a mental and educational assessment before they start treatment and then yearly afterwards. The assessment is carried out by an educational psychologist. This can help you to find out how your child is likely to manage at school and to identify what extra educational needs there are (if any). If necessary, your child can have a statement of extra educational needs. This sets out what support your child needs with education and identifies the support that will be provided. The statement should be reviewed every so often to make sure that what is being provided is still what your child needs.[20]