Glioblastoma: symptoms, causes, treatment and outlook

Cancer Research UK says the symptoms depend on the size of the tumour and where it is in the brain. The NHS adds that symptoms may not be present at the start, or may develop slowly over time.

• Headaches, including a headache that feels different from your usual headaches or is getting worse (NHS).

• Feeling or being sick, and drowsiness.

• Seizures (fits).

• Difficulty walking or balancing.

• Problems with eyesight, such as blurred vision.

• Feeling very tired.

• Changes in personality or behaviour, and memory problems.

• Difficulty speaking or finding the right words.

• Progressive weakness or paralysis on one side of the body (NHS).

The NHS says to see a GP if you have these types of symptoms, particularly a headache that feels different from the type you usually get or if headaches are getting worse. You may not have a brain tumour, but these symptoms should be checked.

If the GP cannot identify a more likely cause, the NHS says they may refer you to a neurologist for further assessment and tests such as a brain scan.

If someone has a first seizure, sudden severe weakness, or is very drowsy and hard to wake, call 999.

Cancer Research UK says glioblastomas develop from glial cells, the supporting cells of the brain and spinal cord, and belong to a group called gliomas. They used to be called glioblastoma multiforme (GBM) and are now called glioblastoma, IDH wildtype, meaning the tumour cells do not have a change in the IDH gene.

Brain tumours are graded by how abnormal the cells look. Glioblastomas are grade 4, meaning fast-growing, cancerous. The NHS says grade 3 and 4 tumours are high grade and more likely to grow back after treatment.

Cancer Research UK says around 32 out of every 100 primary brain tumours diagnosed in England between 1995 and 2017 were glioblastomas, using older classification systems. The NHS says more than 12,000 people are diagnosed with a primary brain tumour in the UK each year, about half of them cancerous.

The NHS says the cause of most brain tumours is unknown, but there are risk factors:

• Age: the risk of getting a brain tumour increases with age.

• Radiation: exposure accounts for a very small number of brain tumours.

• Family history and genetic conditions: some, including tuberous sclerosis, neurofibromatosis type 1 and 2 and Turner syndrome, are known to increase the risk.

Cancer Research UK says tests may include an MRI or CT scan, a test of your neurological system and a biopsy. Doctors check the size and location of the tumour, which helps plan treatment.

A pathologist does tests on the tumour cells. The MGMT methylation test looks at a protein that can repair DNA damage caused by chemotherapy. If the MGMT gene is turned off (methylated), chemotherapy is more likely to work better. Doctors may also test for changes in other genes such as TERT.

Cancer Research UK says the main treatments are surgery, radiotherapy and chemotherapy, on their own or in combination, plus supportive treatments. The plan depends on how much tumour the surgeon removed, how well you are (performance status) and biomarker tests such as MGMT.

Cancer Research UK says treatment can control glioblastoma for some time. When it starts to grow again you usually have more tests. Options may include more surgery, more radiotherapy, more or different chemotherapy (such as PCV or lomustine), a clinical trial, and supportive care.

After treatment you have regular appointments and may have MRI scans. Cancer Research UK says you might have an MRI scan every 3 to 6 months.

It also says a brain tumour can affect your ability to drive, and to ask your doctor or specialist nurse about your right to drive.

The NHS says survival rates are difficult to predict because brain tumours are uncommon and there are many types. They depend on age, type and position of tumour, how well treatment works and general health. Across all cancerous brain tumours it gives around 17 out of every 100 people surviving 5 years or more.

For glioblastoma specifically, Cancer Research UK gives figures for people in the UK diagnosed between 2010 and 2014: more than 5 out of 100 survive 5 years or more. It stresses these are general statistics from large groups, not a prediction for any one person, and that some people live much longer.

Ask your own team what the figures mean for you, at a pace you are comfortable with.

Cancer Research UK says that coping with a brain tumour diagnosis can be difficult practically and emotionally, especially with a fast-growing tumour, and that being well informed can make it easier. It suggests your doctor and specialist nurse can explain treatment and manage side effects.

Many people find it helps to bring someone to appointments, write down questions and ask for a named clinical nurse specialist. Practical issues such as driving, work and benefits can be raised with the team early.

On the NHS a suspected brain tumour is investigated through scans and referral to a specialist team, which agrees a treatment plan. Treatment is free at the point of use.

Some people seek a second opinion or private scans. Whichever route you use, keep your NHS team informed so that scans and records are shared.