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What does a brain tumour diagnosis actually mean?

Hearing the words “you have a brain tumour” is naturally very upsetting. You may have questions about what your diagnosis means, either straight away or once you have had time to process the news.

The key thing to remember is that a brain tumour diagnosis is different for everyone. Tumours can vary widely based on type, size, location, and how they behave or develop. Some tumours are slow-developing and non-cancerous, while others are malignant and require intensive treatment.

Whether you are undergoing tests or have recently been diagnosed, this guide explains brain tumour symptoms, diagnosis and what may happen next.

If you are facing a brain cancer diagnosis and are researching radiation therapy options, the team at Proton International London would be happy to help. We use proton beam therapy to treat a variety of brain cancers at our private clinic.

What are the symptoms of a brain tumour?

The symptoms of a brain tumour vary from person to person. They depend on where the tumour is in the brain, how large it is and how quickly it is growing. Some slow-growing tumours may cause few or no symptoms and are found during a scan for another reason.

Symptoms can be caused by the tumour pressing on the brain, or by the tumour affecting how a particular part of the brain works.

Common symptoms include:

  • Headaches: headaches that are new, persistent or getting worse. They may be worse in the morning, or when you cough, sneeze or bend down.
  • Seizures (fits): these may involve the whole body, or affect just one part, such as twitching in an arm or leg.
  • Feeling or being sick: particularly if this is persistent and happens alongside headaches.
  • Changes in vision: such as blurred or double vision, or loss of part of your field of vision.
  • Changes in memory, thinking or behaviour: such as confusion, difficulty concentrating or changes in personality.
  • Weakness or numbness: often affecting one side of the body.
  • Problems with speech, balance or coordination: such as difficulty finding words, unsteadiness or clumsiness.
  • Drowsiness: feeling unusually tired or sleepy.

More often than not, these symptoms are caused by more common conditions. However, if you have symptoms that are persistent, getting worse or unusual for you, it’s important to speak to your GP. They can examine you and, if needed, refer you for further diagnostic tests and scans.

If you or someone you are with has a seizure for the first time, a sudden and severe headache, or sudden weakness, numbness or difficulty speaking, call 999 or go to A&E.

Are all brain tumours cancerous?

Not all brain tumours are cancerous. A diagnosis is the starting point for a treatment plan, not a fixed outcome. Many brain tumours, particularly certain benign or slow-growing types, can be managed effectively with the right approach.

Brain tumours are broadly described as either benign (non-cancerous) or malignant (cancerous):

  • Benign brain tumours usually grow slowly, have clear cut borders (edges) and do not spread to other parts of the body. However, because the skull is a confined space, a benign tumour can still press on surrounding brain tissue and cause symptoms. This means it may still need treatment or regular monitoring.
  • Malignant brain tumours tend to grow more quickly and can spread into nearby healthy brain tissue, although they usually do not spread to different parts of the body. They usually need treatment, which may include surgery, radiotherapy and chemotherapy.

Doctors also grade cancerous brain tumours from 1 to 4, based on how quickly they are likely to grow.

Grades 1 and 2 are described as low grade, and grades 3 and 4 as high grade. The type and grade of your tumour help your medical team recommend the most appropriate treatment for you.

The difference between primary and secondary brain tumours

The main difference is where the tumour starts.

There are three key differences to understand:

  • Origin: A primary brain tumour starts in the brain or its surrounding tissues. A secondary brain tumour (also known as brain metastases) starts as a cancer elsewhere in the body, such as the lung, breast, kidney, bowel or skin, and spreads to the brain, usually through the blood vessels.
  • Spread: Primary brain tumours rarely spread to other parts of the body, although they can grow into nearby areas of the brain. A secondary brain tumour is a cancer that has already spread from its original site.
  • Nature: A primary brain tumour can be benign or malignant. A secondary brain tumour is always malignant, because it is made up of cancer cells that have travelled from the original tumour.

What is a primary brain tumour?

A primary brain tumour starts in the brain itself or in the tissues around it, such as the membranes that cover the brain (the meninges), the cranial nerves, or the pituitary gland.

There are over 100 types of primary brain tumours, but the most common types include:

  • Meningioma: the most common type of primary brain tumour in adults. It grows in the meninges, the protective layers surrounding the brain and spinal cord. Most meningiomas are benign and slow-growing.
  • Glioma: a tumour that develops from glial cells, which support and protect the nerve cells in the brain. Gliomas range from low-grade, slower-growing tumours to high-grade tumours such as glioblastoma, which grow more quickly.
  • Pituitary adenoma: a tumour that forms in the pituitary gland at the base of the skull. These are usually benign, but they can affect hormone levels or press on the nerves involved in vision.

What is a secondary brain tumour?

A secondary brain tumour, also known as a brain metastasis, happens when cancer cells from another part of the body travel to the brain and form a new tumour. The cancers most likely to spread to the brain include lung, breast, kidney and bowel cancer, and melanoma, a type of skin cancer.

Secondary brain tumours are more common than primary brain tumours. Some people have a single tumour in the brain, while others have several. Occasionally, symptoms in the brain and nervous system are the first sign of a primary cancer that has not yet been diagnosed.

How doctors diagnose brain tumours

Doctors usually diagnose a brain tumour step by step, starting with a physical examination and moving on to detailed scans and laboratory tests. Your GP may refer you to a specialist, such as a neurologist, or you may be seen in hospital if your symptoms come on suddenly.

Physical and nerve tests

A neurological examination checks how well your brain and nerves are working. Your doctor may test your vision, hearing, balance, coordination, strength and reflexes.

Changes in any of these can suggest which area of the brain may be affected. You may also have an eye test looking at the back of your eye (the retina), which can show signs of raised pressure inside the skull.

Imaging scans

Imaging tests and scans help your doctors see whether there is a tumour, where it is and how large it is.

You may be required to undergo scans such as:

  • MRI (magnetic resonance imaging) uses a strong magnetic field and radio waves to produce detailed images of the brain. It is the main scan used to find a brain tumour and show its exact size and position.
  • CT scan (computed tomography) uses X-rays to create images of the brain. A CT scan is quicker than MRI, so it is often used when symptoms come on suddenly, or if MRI is not suitable for you, for example, if you have certain metallic implants in the body.
  • A PET Scan (positron emission tomography) uses a small amount of a radioactive substance injected into a vein to show how active the cells are. A PET scan can help doctors understand how brain tumour cells are behaving and plan treatment.

Laboratory tests

To confirm a tumour’s type and grade, doctors usually need a tissue sample. This may be taken during a brain biopsy, a small operation to remove a tiny piece of the tumour, or during surgery to remove the tumour.

A specialist doctor called a pathologist examines the cells under a microscope and may carry out molecular or genetic tests. These results help your team understand how the tumour is likely to behave and which treatments may be most appropriate.

In some cases, where a needle biopsy would carry too high a risk, a diagnosis may be made from scans alone. You may also have blood tests to check your general health, or your hormone levels if a pituitary tumour is suspected.

What happens after you’re diagnosed with a brain tumour?

Treatment plan

Brain tumours often require a treatment plan put together by a multidisciplinary team (MDT) which may include neurosurgeons, clinical oncologists, neuro-oncologists, radiologists, pathologists and specialist nurses.

Together, they consider the type, grade, size and location of your tumour, as well as your general health and your wishes, and recommend a treatment plan. Your consultant will then talk this through with you.

You will usually be given a key worker, often a clinical nurse specialist, who can be your main point of contact and help you understand each stage of your care.

Brain tumour treatment

Depending on your diagnosis, your treatment plan may include one or more of the following:

  • Active monitoring: Some small, slow-growing tumours that are not causing symptoms may not need treatment straight away. Instead, you will have regular MRI scans to check for any changes. This is sometimes called “watch and wait”.
  • Surgery: Where it is safe to do so, surgeons may remove as much of the tumour as possible. Surgery can also relieve pressure on the brain and provide tissue for diagnosis.
  • Radiotherapy: High-energy radiation treatments can be used to destroy tumour cells or slow their growth. Radiotherapy may be given after surgery to treat any remaining abnormal cells, or as the main treatment where surgery is not possible. For some brain tumours, particularly those close to sensitive structures such as the optic nerves or brainstem, proton beam therapy may be considered because it can tightly target tumours and minimise damage to surrounding tissue.
  • Medication: This may include chemotherapy or targeted drug treatments, or medicines to reduce swelling in the brain and prevent seizures.

Recovery and support

Recovery looks different for everyone and depends on your diagnosis, your treatment and how you feel along the way. Alongside your medical care, a range of support is available to help you regain strength and independence, adjust to changes, and look after your wellbeing.

This may include:

  • Rehabilitation: Physiotherapy, occupational therapy and speech and language therapy can help you regain strength, skills and independence during and after treatment.
  • Practical and emotional support: A brain tumour diagnosis can affect you and your loved ones in many ways. Counselling, support groups and charities can help you and your family manage the emotional and practical changes. The Brain Tumour Charity offers free support and resources for people living with brain tumours.
  • Follow-up care: Regular check-ups and MRI scans allow your team to monitor your recovery and check for any changes.
  • Driving: If you hold a UK driving licence, you are legally required to tell the DVLA about a brain tumour diagnosis. Your medical team can advise you on whether, and when, you may be able to drive again.

Looking ahead after a brain tumour diagnosis

Although receiving a brain tumour diagnosis can feel overwhelming, understanding your condition is the first step towards making informed decisions about your care. Asking questions is an important part of this, and you can seek a second opinion toexplore your diagnosis or treatment options further.

Modern imaging, specialist surgery and advanced treatments such as proton beam therapy continue to improve the options available for many patients. Your healthcare team will explain every stage of the process, answer your questions and support you in choosing the most appropriate treatment plan for your individual needs.

Brain and neurological cancer treatment at Proton International London

Proton International London is the UK’s only private proton beam therapy centre, located within the Proton Beam Therapy Department at University College Hospital London.

Our consultant oncologists treat a range of primary brain and skull base tumours and can advise whether proton beam therapy may be a suitable option for you. Proton beam therapy is not used to treat secondary brain tumours (brain metastases), which are usually treated with surgery, stereotactic or whole brain radiotherapy, or drug treatments.

To find out more, or to request a consultation or second opinion, get in touch with our team.

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