Newly Diagnosed
Initial Diagnosis
Being told you have a brain tumour is life-changing. The first days and weeks often feel overwhelming, filled with unfamiliar words, new faces and decisions that arrive before there has been time to process what is happening.
Every person’s situation looks different, shaped by health, family, culture and community. It is common to feel shocked, uncertain or frightened at this stage. You do not need to understand everything straight away. Support and clear information can help you make sense of what is happening, one step at a time.
The First Few Weeks After Diagnosis
The period immediately after diagnosis is often busy and intense. Appointments, tests and conversations about treatment can follow quickly, leaving little space to absorb information.
You will usually meet several specialists early on, each with a different role in your care:
Neurosurgeon
Performs surgery or biopsy if needed
Medical Oncologist
Plans chemotherapy or other drug treatments
Radiation Oncologist
Plans and delivers radiotherapy
Care Coordinator
Organises appointments and connects you with support services
Bringing someone you trust to appointments can make a real difference.
They can take notes, help remember what was said and act as an extra set of ears when information feels hard to take in. This can be especially important if your tumour or treatment affects memory, speech, vision or hearing.
If you use a wheelchair or mobility aid, or need support with vision, hearing or communication, let your care team know early so appointments and information can be made accessible. If English is not your first language, you can ask for a professional interpreter at any time.
Treatment does not always start immediately. Surgery may be scheduled quickly, but radiotherapy and chemotherapy often require careful planning. If you feel rushed, it is appropriate to ask for more time or to seek a second opinion. Your doctors expect questions and want you to feel confident about decisions being made.
If treatment affects your ability to work, you may wish to speak with your employer about sick leave or flexible arrangements. Information about workplace rights is available through the Fair Work Ombudsman.
The Survivorship Diary is a free resource designed to help people with a primary brain tumour.
It can be used to track appointments, test results, symptoms, questions and decisions in one place, reducing mental load during a demanding time.
This resource can be ordered free, as part of a Brain Cancer Patient Pack, from Mark Hughes Foundation.
Understanding your Diagnosis
After diagnosis, your medical team gathers detailed information to understand what type of tumour you have, how it behaves and how it may affect you. This information guides treatment planning.
You may hear unfamiliar medical terms during appointments. If something is unclear, you can ask for an explanation in plain language or request written information to review later.
There are many different types of brain tumours. Some are benign, meaning they are non-cancerous and often grow more slowly. Others are malignant and may grow more quickly or require urgent treatment.
Your doctor will explain the specific tumour type you have, usually based on imaging and, where possible, biopsy results. Knowing the type helps guide treatment decisions.
Tumours are also described by grade, which reflects how the cells look under a microscope and how the tumour is expected to behave.
- Low-grade tumours (Grade I or II) tend to grow more slowly
- High-grade tumours (Grade III or IV) tend to grow more quickly and can be more challenging to treat
Grade gives information about behaviour, not certainty about outcome.
The tumour’s location in the brain affects symptoms and treatment options. Tumours near areas that control movement, speech, vision or memory can cause changes in those functions. This is why two people with the same tumour type can have very different experiences.
Looking for more information?
Learn more about different types of brain tumour, including side effects, treatment options and more to help you gain a clearer understanding of your diagnosis.
Trigger Warning: Discussion of Life-Limiting Illness
A Question Many People Think About
After a brain tumour diagnosis, many people quietly wonder:
“Am I going to die?”
Thinking this does not mean you are giving up or expecting the worst. It is a common and understandable question.
Brain tumours behave very differently from one another. Some are curable. Some can be managed for many years. Some are life-limiting. Many people do not fit neatly into a single category.
Doctors usually describe prognosis using broad patterns rather than certainties:
- Some tumours are curable, particularly certain benign or low-grade tumours
- Some tumours become a long-term condition, managed over time with monitoring or treatment in stages
- Some tumours shorten life, particularly higher-grade tumours, though timelines vary widely
Some people want clear information about prognosis early. Others prefer not to focus on timelines or statistics. Both approaches are valid, and your preference can change over time.
If you want to discuss prognosis, questions that can help include:
- What does this diagnosis usually mean?
- Are there factors that make my situation different from average?
- What is the goal of treatment right now?
Understanding Prognosis, Timeframes and Statistics
Your prognosis describes how your medical team expects your condition may change over time. It is based on what doctors know from studying large groups of people with similar diagnoses, using the best available evidence.
A timeframe is one way prognosis may be discussed, but it is only one part of the overall picture.
Prognosis helps guide treatment planning and decision-making, but it is not a prediction of what will happen to you as an individual. It cannot fully account for personal factors such as your overall health, your treatment plan, or how your body responds to treatment.
Doctors may talk about prognosis using timeframes or survival information, such as how long people with a similar diagnosis lived on average. These figures may be described using terms such as average survival or median survival. They are drawn from past data and describe patterns seen across groups of people.
Timeframes are used as general reference points. They are not deadlines, guarantees or fixed timelines, and they cannot determine what will happen in any individual case.
You may also hear doctors use statistics or phrases such as “more likely” or “increased risk.” This language is used to compare groups of people and describe how often something happens, not to predict an individual outcome.
Without context, these statements can sound more definite than they are meant to be. Understanding what is being compared, and how common something is to begin with, can help make sense of this information. It can help to ask what the starting chance was before it increased.
You might remember a doctor saying something like, “The average survival is around X number of months.”
This means that, when looking at large groups of people with the same diagnosis, the middle point of survival falls around that time. Some people lived for less time than this and some lived for longer. This type of timeframe is used as a general guide based on past data. It does not predict what will happen in any individual case.
You might also hear that something is “X times more likely” to happen.
This kind of statement compares two groups of people. It means the outcome happens more often in one group than in another. On its own, it does not tell you how common the outcome actually is. If the starting chance was very low, even a large increase can still mean the outcome is uncommon.
Prognosis information supports planning and informed decision-making. If something you were told feels unclear or absolute when you think back on it later, it is reasonable to ask your care team what that information was based on and what it does and does not mean. You can also say if you do not want to focus on this right now.
Emotional Responses
Receiving a brain tumour diagnosis can stir up many emotions. Shock, fear, sadness, anger or even numbness are all common. Your feelings may change day by day as you begin to process the news. Different cultures, families and personal histories shape how people express and cope with these emotions, and there is no single right way to respond.
For the person diagnosed:
Worries about the future, treatment or daily life are natural. Some people feel pressure to stay positive, but it’s okay to feel vulnerable or uncertain. Taking one step at a time can make the road ahead feel more manageable.
For family and carers:
Loved ones often want to stay strong, but may also feel anxious or powerless. It’s important for carers to look after their own wellbeing too – your health matters.
Support options include talking with your medical team, counselling or psychology, peer support groups and practical self-care strategies like gentle exercise or journaling.
Questions to Ask Your Doctor
Clear communication with your healthcare team can make a big difference. Preparing a list of questions before each appointment helps you feel more in control.
Remember, no question is too small. Your care team is there to support you and asking questions helps you take an active role in your care.
- What type of tumour is it, and where is it located?
- What tests or scans are still needed?
- How certain are you about the diagnosis?
- How might this tumour affect my memory, movement or other abilities?
- Would it be helpful to get a second opinion, and can you guide me on how or where to ask for one?
- What symptoms should I call you about immediately (24/7 contact)?
- What treatment do you recommend, and why?
- What is the goal of this treatment – to cure, control or manage symptoms?
- How urgent is it to start treatment?
- What happens if I decide to wait or not have treatment?
- What are the possible side effects of this treatment?
- How will treatment affect my daily life (e.g. work, driving, caring responsibilities)?
- Are there clinical trials available that I should consider?
- How will we know if the treatment is working?
- What support is available to help manage side effects?
- Will this treatment affect my ability to have children in the future? (If relevant to your age/situation).
- Are there other specialists I should see (e.g. neuropsychologist, physiotherapist)?
- What support services are available for me and my family?
- Who can I contact if I have more questions later?
- Is there someone I can talk to who has been through a similar diagnosis?
- Where can I find support groups for people with my type of cancer?
- Who can I talk to about the financial aspects of my treatment plan?
Next Steps and Support
After a diagnosis, it’s normal to feel like you’ve been thrown into unfamiliar territory. What happens next can look different depending on where you live, your health, your family and the support around you, but you do not have to navigate it alone. Over the coming days and weeks, you may:
- Have follow-up scans or tests.
- Meet with specialists to discuss treatment options.
- Begin preparing for surgery, radiation or chemotherapy.
- Be introduced to support services such as nurse navigators or social workers.
Support is available at every stage, from medical professionals to peer groups and counselling services. Reaching out is not a sign of weakness; it is a way to give yourself and your loved ones the best chance to cope and adjust.