What is an oligodendroglioma?
An oligodendroglioma is a type of brain tumour. It belongs to a group of tumours called gliomas.
Gliomas are made up of cells that look similar to glial cells. Glial cells are the supporting cells in the brain or spinal cord. There are different types of glial cells.
An oligodendroglioma is made up of cells that look like glial cells called oligodendrocytes. These cells wrap around nerve cells and act as a layer of insulation. This helps our nerves send messages when telling our body to do something.
This type of tumour usually starts in the brain. It may start in the spinal cord, although this is rare. It does not spread to other parts of the body. An oligodendroglioma can develop in people of any age, although it is often diagnosed in people in their 20s and 30s.
This information is about oligodendrogliomas in adults. The Children’s Cancer and Leukaemia Group has more information on caring for children with cancer, including brain tumours. The The Brain Tumour Charity also has information about brain tumours in children.
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Symptoms of an oligodendroglioma
Symptoms can depend on the size and position of the tumour. They also depend on how slowly or quickly it grows. Symptoms may develop suddenly, or slowly over months or even years.
Symptoms may happen if a tumour presses on or grows into nearby areas of the brain. This can stop that part of the brain from working normally. Symptoms can also happen because the tumour causes a build-up of pressure inside the skull. This is called raised intracranial pressure.
Possible symptoms include:
- seizures (fits)
- headaches
- feeling or being sick
- difficulty speaking or understanding words
- weakness in an arm or a leg
- problems with movement and balance
- problems with sight.
Seizures are often the first symptom. People with a slow-growing oligodendroglioma may have mild symptoms for several years before the tumour is found.
We have more information about possible symptoms of a brain tumour.
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Causes of oligodendroglioma
The causes of oligodendrogliomas are unknown, but research is being done to find out more.
We have more information about risk factors and causes of brain tumours.
Diagnosis of oligodendroglioma
Your doctors need to find out as much as possible about the type, position and size of the tumour so they can plan your treatment.
You will usually have brain scans to find out the exact position and size of the tumour.
You may first have a brain CT scan first. You also usually have an MRI brain scan.
Having an MRI scan is important as it can give more detailed information. If you are not able to have an MRI scan, your doctor will discuss this with you.
There are different types of MRI scans. You may need to have more than 1 to ensure that your doctors have all of the information they need to make a diagnosis and guide any treatment.
We have more information on the different types of MRI scans used to diagnose brain tumours.
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Biopsy
You may also have a biopsy, which involves an operation to take a sample of the tumour to test. Brain tumour biopsies are usually done at the same time as surgery to remove the tumour.
Your doctor may also:
- do a physical examination of parts of your nervous system, such as checking your reflexes and the power and feeling in your arms and legs
- shine a light at the back of your eye to check if there is swelling
- ask you questions to check your reasoning and memory
- arrange for you to have blood tests to check your general health and to see how well your kidneys and liver are working.
Grading and molecular marker tests for oligodendrogliomas
A neuro-pathologist (doctor who specialises in examining brain tissue samples) looks at the tumour sample under a microscope. This is to find out how fast the tumour is likely to grow. Tests called molecular marker tests are also done on the sample to look for genetic changes (mutations) in the tumour cells. Molecular markers may also be called biomarkers.
Your doctor will use information to understand how quickly a tumour might grow and to help them decide on treatment.
Grading of oligodendroglioma
The grade of a tumour describes how abnormal the cells look under a microscope, which gives an idea of how fast the tumour may grow.
Usually, gliomas are graded from 1 to 4, but there are only the following 2 grades for an oligodendroglioma:
- Grade 2 tumours are low-grade, slow growing tumours.
- Grade 3 tumours are high-grade tumours that grow more quickly.
Molecular marker (biomarker) tests
Molecular marker tests are often done on samples removed from the tumour during surgery. They are also called biomarker tests. Molecular markers describe markers, proteins, or changes in the genetic structure of a tumour.
The samples are tested for changes in the genes in the tumour cells. This change is called a gene mutation. Molecular markers tests also look for certain tumour markers or proteins in the tumour.
Molecular markers can give doctors information:
- to help confirm a diagnosis
- about the type of brain tumour
- about how the tumour may behave in the future
- about which treatment is likely to be the most effective.
Some of the most common genetic changes looked for in oligodendrogliomas are called:
- IDH mutation
- 1p/19q codeletion
- ATRX mutation.
If there is a change in the IDH gene, it is called a IDH mutation or IDH mutant. An oligodendroglioma will be IDH mutant. If there is no change, it is called IDH wildtype.
A change in the ATRX gene is a called a ATRX mutation.
Genes are organised into structures called chromosomes. When tests look at 1p/19q gene, they are looking to see if there is a part of chromosomes 1 and 19 missing in the tumour cells. If there is, this is called 1p/19q co-deletion. This is the molecular marker of an oligodendroglioma and confirms the diagnosis of an oligodendroglioma.
Depending on initial results, further molecular tests may be done on the same sample, to look for other gene changes. The tests may be done with a technology called Next Generation Sequencing (NGS) or Whole Genome Sequencing (WGS).
In some cases, different results in molecular markers may change the type of treatment you are offered. Or may mean you are able to join a clinical trial.
You may have to wait some time for the results of these tests. Your doctor can tell you whether molecular marker tests might be helpful in your situation.
Treatment for oligodendroglioma
The main treatments for oligodendrogliomas are surgery, radiotherapy and chemotherapy. You may have a combination of treatments.
Treatment depends on:
- the size and position of the tumour
- its grade
- the molecular marker results
- your symptoms.
A team of specialists will plan your treatment. Your specialist doctor and specialist nurse will explain the aims of your treatment and what it involves. They will talk to you about the benefits and risks of different treatment types. They will also explain the side effects.
You may be given a choice of treatment options. You will have time to talk about this with your family, friends and your hospital team before you make any treatment decisions.
You will need to give permission (consent) for the hospital staff to give you the treatment. Ask any questions about anything you do not understand or feel worried about. Tell your specialist if you need more information or more time to decide on a treatment.
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Surgery
If you need treatment, you usually have surgery to remove the tumour. The surgeon will remove as much of the tumour as safely as possible.
Depending on the size and position of the tumour, sometimes it may not be possible to remove all the tumour. Your surgeon will discuss this with you and whether you might need further treatment after surgery.
If surgery is not possible, your doctor will talk to you about other treatments.
Further treatment
After surgery, the MDT (multidisciplinary team) will discuss whether further treatment might be recommended. This may be radiotherapy or chemotherapy, or both. You may be referred to a doctor who specialises in cancer treatment called an oncologist. They will talk to you about the benefits and possible side effects of the treatment.
Further treatment will depend on:
- how much of the tumour it was possible to remove
- the grade of the tumour
- the molecular markers
- your symptoms
- your general health.
The aim of further treatment is to delay or reduce the risk of the oligodendroglioma coming back after surgery. It also aims to delay or reduce the risk of low-grade tumour developing into a higher-grade tumour (malignant or cancerous transformation).
Active monitoring (active surveillance)
If diagnostic brain scans suggest the tumour is low-grade and not causing you problems, your doctor may suggest active monitoring. This is also called active surveillance or watch and wait. Active monitoring means regularly checking the tumour with follow-up MRI brain scans to find out if it is growing or changing. Your doctor will also monitor your symptoms carefully.
Some people may have active monitoring before they have any treatment. This means you have active monitoring instead of having treatment straight away.
They may also suggest having a biopsy to confirm the diagnosis, if you have not had one already. A biopsy is an operation to remove a small piece of the tumour.
If you have surgery, active monitoring may also be suggested after surgery instead of having immediate further treatment. This means delaying treatment until it is needed.
Delaying treatment might be beneficial in some situations, because treatment can cause side effects. Some of these may be permanent. Instead of starting treatment straight away, you may meet your specialist doctor regularly to discuss the results of your scans. The scan results help your doctor know if and when to recommend treatment.
High-grade tumours grow more quickly, so will usually need to be treated straight away.
Active monitoring after surgery
You may be offered active monitoring after surgery. This will depend on:
- the grade of the tumour
- molecular markers
- how much was removed with surgery
- your age.
You have regular scans to check if the tumour is growing again and delay having further treatment until it is needed.
You may find it difficult to cope with the uncertainty of active monitoring and not having treatment. Your specialist nurse can give you support and advice on coping. You might find it helpful to talk about how you feel with family and friends. Or you may want to talk to people who are in a similar situation. You could try joining a support group or you could visit our brain cancer forum to talk with people who have been affected by brain tumours, share your experience, and ask an expert your questions.
Radiotherapy and chemotherapy
After surgery, the MDT will discuss whether further immediate treatment might be recommended. This may be radiotherapy, chemotherapy, or both. You may also have radiotherapy and chemotherapy if surgery is not possible, or if the tumour cannot be completely removed.
You may be referred to a doctor who specialises in cancer treatment called an oncologist. They will talk to you about the benefits and possible side effects of the treatment.
Radiotherapy uses high-energy x-rays to control or destroy the tumour cells.
Chemotherapy uses anti-cancer drugs to destroy the tumour cells. If you have chemotherapy, a combination of drugs may be used. The chemotherapy drugs most commonly used are:
- procarbazine
- lomustine (CCNU)
- vincristine.
This combination is called PCV.
Your doctor will talk to you about your treatment options.
Side effects of treatment for an oligodendroglioma
Your cancer doctor or specialist nurse will explain your treatment and possible side effects. Most side effects are short term and will improve gradually when the treatment is over. Some treatments can cause side effects that can continue and may not get better. These are called long-term effects. You may also get side effects that start months or years later. These are called late effects.
We have more information about coping:
- before and after surgery
- with side effects of radiotherapy
- with side effects of chemotherapy
Treatment for symptoms of an oligodendroglioma
You may need treatment for the symptoms of an oligodendroglioma before you have any treatment for the tumour. You may also need your symptoms managed during your main treatment after it has finished.
You may have the following treatments:
- Drugs to reduce the risk of having seizures called anti-convulsants or anti-epileptic drugs (AEDs).
- Steroids to reduce swelling around the tumour.
- Surgery to drain off excess fluid, to reduce pressure inside the skull.
Sometimes a brain tumour cannot be removed or may stop responding to treatment. If this happens, you can still have treatment for any symptoms. You will have supportive care (sometimes called palliative care) from a specialist doctor or nurse who is an expert at managing symptoms and providing emotional support.
We have more information about coping with advanced cancer.
Clinical trials
Clinical trials are a type of medical research involving people. They are important because they show which treatments are most effective and safe. This helps healthcare teams plan the best treatment for the people they care for.
Trials may test how effective a new treatment is compared to the current treatment used. Or they may get information about the safety and side effects of treatments.
They will give you information about the clinical trial so that you understand what it means to take part. If you decide not to take part in a trial, your specialist doctor and nurse will respect your decision. You do not have to give a reason for not taking part. Your decision will not change your care. Your doctor will give you the standard treatment for the type of tumour you have.
Clinical trials also research other areas. These include diagnosis and managing side effects or symptoms. As these tumours are rare, there may not always be a relevant clinical trial happening. If there is, your doctor or nurse may ask you to think about taking part.
We have more information about clinical trials.
After treatment for an oligodendroglioma
After your treatment has finished, you will have regular check-ups, tests and scans. How often you are seen and for how long may vary depending on the size and grade of the tumour, the biomarkers found and what treatment you have have had. Appointments are usually more frequent to begin with.
You may continue to have some side effects from treatment. These may include tiredness, or problems with processing thoughts and ideas.
Some side effects can start months or years after treatment has finished. You can use your follow-up appointments to talk about these side effects, or about any other worries or problems you have. Your doctor or nurse may refer you to a neurological rehabilitation (neuro-rehab) service. This service may be able to refer you to a physiotherapist, speech and language therapist or occupational therapist and offer emotional support.
If you have any symptoms or side effects you are worried about, you can also contact your doctor or nurse between appointments.
Many people find they get anxious before appointments. This is natural. It may help to get support from family, friends or a specialist nurse.
How diagnosis affects your right to drive
Following diagnosis and treatment for a brain tumour, most people will not be allowed to drive for a period of time. If you drive, it is important to discuss with your doctor how your diagnosis and treatment for a brain tumour affects your right to drive.
If you have a driving licence, you must tell the licencing agency (DVLA or DVA) that you have been diagnosed with a brain tumour. We have more information about how a brain tumour may affect your right to drive.
Getting support
Being diagnosed with a brain tumour may cause a range of different emotions. There is no right or wrong way to feel. It may help to get support from family, friends or a support organisation.
Macmillan is also here to support you. If you would like to talk, you can:
- Call the Macmillan Support Line for free on 0808 808 00 00.
- Chat to our specialists online.
- Visit our brain cancer forum to talk with people who have been affected by brain tumours, share your experience, and ask an expert your questions.
You may also want to get support from a brain tumour charity, such as:
About our information
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer.
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References
Below is a sample of the sources used in our information about oligodendrogliomas. If you would like more information about the sources we use, please contact us at informationproductionteam@macmillan.org.uk
European Association of Neuro-Oncology and European Society for Medical Oncology (EANO-ESMO) Clinical Practice Guidelines for prophylaxis, diagnosis, treatment and follow-up: Neurological and vascular complications of primary and secondary brain tumours. 2021. Available from: www.annalsofoncology.org/article/S0923-7534(20)43146-1/fulltext [accessed June 2024].
European Association of Neuro-Oncology (EANO) guidelines on the diagnosis and treatment of diffuse gliomas of adulthood. Michael Weller et al. Nature Reviews Clinical Oncology. Published: March 2022. Available from: www.nature.com/articles/s41571-022-00623-3 [accessed June 2024]
NICE Guideline NG99. Brain tumours (primary) and brain metastases in over 16s. 2018 (updated 2021). Available from: www.nice.org.uk/guidance/ng99 [accessed June 2024].
National Institute for Health and Care Excellence (NICE) Brain tumours (primary) and brain metastases in over 16s. Quality standard [QS203] Published: 07 December 2021. Neurological rehabilitation. Available from: www.nice.org.uk/guidance/qs203/chapter/quality-statement-5-neurological-rehabilitation#quality-statement-5-neurological-rehabilitation [accessed June 2024]
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