Appointment
Brain scan
Resection/biopsy
Mutational testing
Diagnosis
You may already have a good understanding of what glioma is, but if you want to learn more about the disease, or help your family or friends understand, the information in this section aims to provide a broad overview of the disease and the treatment journey.
What is adult‑type diffuse glioma?
Adult‑type diffuse glioma is a type of brain cancer that starts in the cells that support and protect the brain. Cancer develops when some cells stop behaving normally because of changes in their DNA.
There are a few main types of glioma, including:
- Astrocytoma
- Oligodendroglioma
- Glioblastoma
Each type behaves differently, but all can interfere with normal brain function and cause various symptoms.
What are the common symptoms of glioma?
Symptoms of glioma can vary from patient to patient and can be affected by tumour type and location.
Both before and after a glioma diagnosis, patients may experience:
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Changes in mental function
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Seizures
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Speech difficulties
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New weakness or numbness in one or more body parts
(e.g. fingers, an entire leg, one side of the face)
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Headache
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Nausea/Vomiting
Glioma diagnosis and management
As the first step in planning your care, your doctor will organise a brain scan. This scan, often an MRI or CT, gives clear images of your brain so your team can see exactly where the tumour is and how much of it can be safely removed.
Both the size and location of your tumour(s) will have an impact on whether the tumour can be removed by your neurosurgeon, and how much of it can be removed. While there is still a chance that the tumour will grow again after a surgery, reducing the size of the tumour is often the first treatment approach.
Surgery to remove a brain tumour is called a resection.
- If your surgeon is able to remove the entire tumour, this is called a total (or complete) resection.
- If only part of the tumour can be removed — usually because taking more would risk harming healthy, important areas of the brain — this is called a sub‑total (or incomplete) resection.
Any tumour left behind after surgery is called residual disease.
Sometimes a tumour cannot be safely removed. In these cases, your surgeon may take a small sample of the tumour, called a biopsy. This sample is sent to a pathology lab, where specialists examine it to determine the exact type of tumour. This information helps you and your doctor choose the most appropriate next steps. If a biopsy cannot be done, your doctor will rely on your brain scans and other clinical information to guide your treatment plan.
Following a resection, biopsy, or brain scan, you and your doctors will be able to decide what the best approach to treatment will be moving forward.
Your glioma was found to have an IDH mutation, which makes you eligible for treatment with VORANIGO® (vorasidenib).
- Your tumour might also have other mutations, knowing these can give you and your doctor clues about how aggressive the cancer might be.
- Knowing about the other mutations found by the pathologist might give you options for other treatments in the future, through clinical trials or new treatments that emerge.
Understanding how gliomas are classified
Understanding the updated World Health Organisation (WHO) glioma classification system
Before 2016, gliomas were classified according to what the cells looked like under a microscope, which could be interpreted differently from one healthcare provider to another.
With advancements in our understanding of mutations, the WHO updated the classification system in 2021, which created a more accurate way to categorise brain tumours.
Today, the standard practice for classifying gliomas is to obtain a genetic profile. This has created a database of information about the types of gliomas and their associated mutations.
The two main categories used are mutations in the IDH gene and 1p/19q-codeleted chromosomes.
WHO classification: The three categories of adult‑type diffuse gliomas
| Type of glioma | Associated mutations | Grade |
|---|---|---|
| Astrocytoma | IDH-mutant | 2, 3, 4 |
| Oligodendroglioma | IDH-mutant, and 1p/19q-codeleted chromosomes | 2, 3 |
| Glioblastoma | IDH–wild-type (non-mutated IDH) | 4 |
The grading of a tumour provides information about how far advanced it is and how quickly it is likely to grow. A tumour grade of 0 is the least advanced, and a tumour grade of 4 is the most advanced. Gliomas that are grade 2 or less are considered to be low grade gliomas. Grade 3 or 4 gliomas are considered to be high grade gliomas.
The power of knowledge
By seeking information about glioma, you are arming yourself and your loved ones with the power to advocate for your own health. Understanding glioma, how it can be treated, and knowing what mutations your glioma may have will help you navigate this diagnosis.
How do mutations impact glioma
Different genetic mutations affect glioma in various ways. Identifying mutations can help you and your doctor understand your symptoms, how your tumour is likely to behave over time, and make decisions about treatment for your glioma.
Testing for an IDH mutation in all patients with glioma is essential based on the most current guidelines. After a brain scan, your tumour(s) may have been partially or completely removed, or a biopsy may have been performed. In either scenario, the tumour tissue will be sent to a lab for analysis. The lab will test the tissue for mutations like IDH1 and IDH2. Your glioma will also be tested for other mutations, such as 1p/19q-codeletion, ATRX, and CDKN2A/B.
~400 people are diagnosed with an IDH-mutant glioma in Australia and New Zealand every year. (AIHW)
How mutations in glioma may affect my prognosis
Your prognosis is your doctor’s best estimate of how your tumour is likely to behave over time. It helps guide conversations about treatment options and what to expect moving forward.
One important part of understanding your prognosis is knowing whether your glioma has an IDH mutation. In general, gliomas with an IDH mutation tend to have a more favourable outlook than those without this mutation. This information is just one piece of the puzzle, and your doctor will consider many factors when discussing your individual situation.
Make sure you talk with your care team about what your tumour’s mutational status means for you, and how it fits into your overall treatment plan.
You are your most powerful ally
Being an active participant in your care can help you and your doctor work toward your treatment goals. The knowledge you’ve gained about glioma can help you ask questions, understand your options, and have meaningful conversations with your care team.
Working with your healthcare team
Communication about expectations is encouraged from both sides
You and your healthcare team will work together to create a treatment plan tailored to your needs and preferences. The treatment plan will include if and when treatment should start, which treatments are right for you, and how often your follow-up appointments will be. Be sure to communicate your treatment goals with your healthcare team so they can build them into your plan.
Follow-up appointments, including brain scans, are a vital part of your treatment plan. Work with your healthcare team to follow their recommended appointment schedule as closely as possible.
What happens after your diagnosis?
A glioma diagnosis can be overwhelming and may require you to make some adjustments in your life.
While some people living with glioma are able to continue going to work, caring for their children, exercising, or attending school after their diagnosis, everyone’s situation is different, and what you can continue doing will depend on your symptoms, treatment plan, and energy levels. It’s important to recognise that these activities may require extra planning, and you may notice new limitations along the way.
You may have to go to a treatment center for some therapies, such as chemotherapy infusions and radiation. Recovery therapies that may be performed outside the home include occupational therapy and speech therapy. Depending on how you’re feeling, you may need someone to drive you to and from these sessions. It can be helpful to start thinking ahead about how you’ll get to your appointments and who might be able to support you with transport when needed.
What can I expect from my glioma treatment?
You and your doctor will develop a treatment plan that is personalised to you. Here are some of the options that are available. Note that some may be used in combination with each other.
| Treatment options | What is it | Treatment goal |
|---|---|---|
| Surgery (resection) | If your tumour(s) can be removed and you are healthy enough to have surgery, your doctor may recommend a total or partial resection. If your tumour grows back, your may be suitable for a repeat resection | Reduce pressure in the brain, stop progression, and relieve symptoms |
| Observation period (“watch and wait”) | In some cases, delaying treatment gives you and your doctor more time to evaluate your disease | Reduce the amount of time you may experience possible side effects from treatment |
| Radiation therapy | A type of cancer treatment that uses rays to destroy cancer cells | Destroy the remaining cancer cells after a resection |
| Chemotherapy | Chemotherapy for gliomas can be given as infusions and as pills taken by mouth | Destroy the remaining cancer cells after a resection |
| Clinical trials | Clinical trials study new ways of preventing, diagnosing or treating conditions and diseases. | Gain access to cutting-edge treatments that are not yet available to the general public |
What to expect after your surgery
After your surgery you and your healthcare team will work together to create a treatment plan tailored to your needs and preferences. As highlighted in the table above there are several options for continuing your treatment after you have completed your first surgical resection. Sharing your treatment goals is important, as it helps your team make sure your plan reflects what matters most to you.
Staying on track with follow-up care
Follow-up appointments, including imaging, are important for anyone managing glioma
These appointments help you and your doctor keep track of your treatment and how well it’s working. Making time to attend your appointments is important, as they allow your doctor to check in with you, understand how you’re feeling, and adjust your treatment plan when needed.
Your doctor may also assess your blood cells and your organ function and ask about possible side effects of your treatment. Sometimes changes in bodily function may require a smaller dose of medication or stopping treatment altogether for your safety. Your doctor may ask about new symptoms, your mental health, and how you’re doing day-to-day, so they can support you and tailor your care as needed.
Brain scans can be stressful. It is not uncommon to feel nervous in the lead up to a scheduled scan and during the time that you are waiting to hear the result. Ask your care team how long it is likely to be before you can get the results and who you can contact to ask questions.
Follow-up appointments are usually more frequent in the beginning of your treatment and may become less so as time goes on. Follow-up appointments may differ from person to person, and depends on your treatment plan.
Advocating for yourself will help your doctor meet your treatment goals
You know your body better than anyone, so speak to your health care provider if you feel that something isn’t right.
The impact of glioma treatment on daily life
Depending on your treatment, whether it’s surgery, radiation therapy, or chemotherapy, you may experience side effects that impact your daily activities. It can be helpful to keep track of any symptoms you notice, including changes in how you feel physically or mentally. Sharing these with your care team is important, especially if any symptoms become difficult to manage, so they can support you and adjust your treatment if needed.
