Make the right choices for you
Our Step by Step interactive guide outlines what happens following a diagnosis, to answer your questions and help you to understand what to expect.
To ensure that you receive the best possible care, it is now a national recommendation that all patients are discussed and treated by a team of dedicated specialists. This multi-disciplinary team (MDT) works together to create your personalised treatment plan.
Although not technically part of the MDT, your GP (or family doctor) may be the first person you seek medical advice from when you experience symptoms of any kind.
Your GP will also be involved in your day-to-day care during and after treatment.
A neurologist specialises in medical, non-surgical problems relating to the brain, spinal cord and nerves in the body. You may be referred to a neurologist for your initial diagnosis.
The neurologist will check your general health and your nervous system (called a neurological examination). This involves looking at your vision, hearing, alertness, muscle strength, co-ordination, and reflexes. They will also look at the back of your eyes to see if there is any swelling of the optic disc - a sign of raised pressure inside the skull, which could be a sign of a brain tumour. They may also send you for a scan.
Following a scan, if a tumour is suspected and your tumour can be operated on, you will be referred to a neurosurgeon. The neurosurgeon may carry out a biopsy (removal of a small piece of the tumour) so that the tumour can be analysed and diagnosed.
They may be able to fully or partially remove the tumour (debulking) and a biopsy will also be taken at this time. You can expect to see your neurosurgeon before and after surgery and for follow-ups in outpatient clinics.
A neuropathologist diagnoses diseases of the central nervous system (brain and spinal cord) by looking at a sample of brain tissue (‘biopsy’) under a microscope. From carrying out this examination, the neuropathologist is able to give a diagnosis of the type and grade of the brain tumour. This will affect the type of treatment that may be offered following surgery.
A clinical nurse specialist (sometimes called a neuro-oncology nurse) acts as a point of contact between you, your family and the rest of the MDT. For this reason, they are often called key workers.
Your CNS will be able to help with any questions or concerns you may have about your treatment as they can liaise with all members of the MDT on your behalf.
Your CNS can offer specialist advice, information and support to you and your family from diagnosis onwards and refer you to other services if you need them e.g. fatigue management, seizure management, psychological issues, benefits.
In the UK, an oncologist is a healthcare professional who specialises in the non-surgical management of patients who have tumours. They undergo training in the management of all types of tumour, but increasingly concentrate on treating two or three types. Non-surgical management of tumours involves radiotherapy, chemotherapy or both.
There are different types of oncologists who you may hear of, or meet, as part of your treatment. They work closely with other members of the MDT to plan and co-ordinate your treatment. Clinical oncologists are the most common non-surgical speciality involved in treating brain tumours. They specialise in both radiotherapy and chemotherapy. (They are sometimes referred to as ‘radiotherapists’).
Medical oncologists specialise in chemotherapy only.
Neuro-oncologists are oncologists who specialise in the non-surgical treatment of tumours of the brain and spinal cord. In the UK, most neurooncologists are also clinical oncologists.
A doctor who specialises in the use of imaging , such as X-rays and scans, to diagnose tumours of the brain and spine.
Radiographers are not doctors, but they are highly trained health professionals. There are two types of radiographer - diagnostic radiographer and therapeutic radiographer.
The diagnostic radiographer uses a range of imaging technology to produce the images of the brain that are used to aid diagnosis by the neuroradiologist.
The therapeutic radiographer is the person who actually administers the radiation treatment. Radiographers work with other professionals, including clinical oncologists and medical physicists, to help plan your treatment. Whilst you are receiving your radiotherapy you will see these radiographers daily.
You are unlikely to meet the medical physicist, but they help to plan the doses of radiation you need for radiotherapy treatment. They also work out how the treatment should be staged to give normal cells time to recover before the next dose.
Occupational therapists can help you by giving cognitive assessments and rehabilitation (testing and, if needed, helping you with your memory, language skills, problem-solving and attention), upper limb rehabilitation, fatigue management and anxiety management (including relaxation therapy) and help with work-related difficulties.
They can also help you to manage daily activities, including dressing, cooking, eating and showering. They may suggest certain aids or equipment around the home to make jobs easier for you, such as a hand rail to help you in and out of the bath.
A physiotherapist helps with the recovery of your physical functioning through physical manipulation of the body and exercises. Patients with brain tumours are often referred to a physiotherapist because of difficulties with balance or muscle weakness caused by the tumour or its treatment. The physiotherapist may put together a programme for you that that includes exercises at home, the gym or in a hydrotherapy pool.
You may be referred to a speech and language therapist if your tumour affects an area of the brain that is involved with language. Speech and language therapists can also help with difficulties relating to eating and swallowing, which can be an effect caused by the brain tumour.
A dietitian specialises in food and nutrition and can help create dietary plans to suit your individual nutritional needs, taking into consideration your medical records.
If you’re affected by a brain tumour and are experiencing problems with your diet or weight, a registered dietitian is the professional who’s best qualified to help you.
They are the only professionals in the field of nutrition whose practice and ethical standards are governed by law. This makes sure that their work is carried out at to the highest possible standard and protects patient safety.
Dietitians can work within the NHS or privately. If you feel you need to see a dietitian, ask your doctor to refer you to one working within the NHS.
Nutritionists work in a variety of settings from the NHS to food industries. Nutritional therapists often have private practices where they give advice to people about what they should eat to lose or gain weight, or manage symptoms of different ailments.
Nutritionists and nutritional therapists within the UK are not regulated to the same degree as dietitians. There’s no guarantee they’ll give you advice or supplements based on scientific evidence instead of their own personal opinion.
Neuropsychologists are concerned with the assessment and rehabilitation of people with traumatic brain injury, such as caused by brain tumours and their treatment. They use various tests such as language assessments, personality tests, problem solving evaluations and other mental and behavioural examinations to help you deal with cognitive and behavioural changes caused by the physical damage to the brain.
A clinical psychologist is concerned with reducing psychological and emotional distress and promoting psychological well-being. They help with difficulties such as anxiety, depression and relationship issues. They use a range of assessments and tests and can suggest counselling, therapy or advice to help you.
A clinical psychiatrist is a medically qualified doctor who has chosen to specialise in psychiatry. They help with mental disorders and are able to prescribe medication and other treatments.
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
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