A primary brain tumour is a tumour that starts in the brain. The brain manages how we think, feel, learn and move. It also controls other important things in the body, such as breathing and heart rate.
There are many different types of brain tumour. They are often named after the cell they develop from or the part of the brain they start in. A brain tumour can be:
Low-grade – not cancer, sometimes called a benign tumour (usually called grade 1 or grade 2)
High-grade – cancer, also called a malignant tumour (usually called grade 3 or grade 4)
A low-grade tumour usually grows slowly and may not cause symptoms for a long time.
A high-grade tumour grows faster than a low-grade tumour.
A brain tumour can cause headaches but it is unusual for this to be the only symptom. Other common symptoms include seizures, weakness of the arms or legs (often on just one side), difficulties with short term memory, difficulty with talking and changes to personality. The symptoms experienced will depend on where the tumour is in the brain and how slowly or quickly it grows. They may develop suddenly or slowly over months or even years.
Other conditions may cause similar symptoms. But if you have any symptoms, it is important to get them checked by your GP.
If you have been told you have a brain tumour, or you want to find out more about brain tumours the links below take you to some of the charities who offer valuable information and support:
Brain Tumour Charities:
|Brain Tumour Charity||Telephone||Website|
|Brain Tumour Support||01454 firstname.lastname@example.org||www.braintumoursupport.co.uk|
|The Brain Tumour Charity||0808 800 email@example.com||www.thebraintumourcharity.org|
|Macmillan Cancer Support||0808 808 0000||https://www.macmillan.org.uk/about-us/contact-us/ask-macmillan-form.html||https://www.macmillan.org.uk/cancer-information-and-support|
If you are having issues with managing your day to day routines, there are teams and services across Hertfordshire that can help you.
Hertfordshire Support Organisations:
Please see below details of services in Hertfordshire that provide support with adult social care, benefits, equipment, travel and support for carers:
|Herts Help||0300 123 firstname.lastname@example.org||www.hertshelp.net||Help with finding care and support services|
|Hertfordshire County Council||0300 123 4042||www.hertfordshire.gov.uk/services/Adult-social-services/Adult-social-services.aspx||Adult Social Services and Social Care/Blue Badge Applications/Bus Passes|
|Hertfordshire Equipment Services||01707 email@example.com||www.hertfordshire.gov.uk||Equipment to support living well in the community|
|Millbrook Wheelchair Services Herts||0333 234 firstname.lastname@example.org||www.millbrook-healthcare.co.uk|
|Hertfordshire Wellbeing Service for Counselling||0800 6444 email@example.com||www.hpft.nhs.uk|
|Hertfordshire Macmillan Benefits Service||01438 firstname.lastname@example.org||www.hertfordshire.gov.uk/macmillanbenefits||Specialist benefits advice for people affected by cancer|
|Age UK Hertfordshire||0300 345 email@example.com||www.ageuk.org.uk/hertfordshire||Services to support older people in Herts|
|Carers in Herts||01992 58 firstname.lastname@example.org||www.carersinherts.org.uk/home/contact-us||Services and support for unpaid carers in Herts|
|Herts Fire & Rescue Service||0300 123 4046||https://www.hertfordshire.gov.uk/services/Fire-and-rescue/Request-a-visit-from-the-fire-service/Request-a-visit-to-your-home-or-school.aspx||Safe and well visit including fire safety|
You may experience specific difficulties as a result of the tumour.
Physical Wellbeing is very important while going through treatment and living with cancer.
If you have problems with mobility, a Physiotherapist referral can help with activity/exercise programmes and equipment i.e. walking sticks, outdoor walking frames, indoor zimmer frames, or a wheelchair.
An Occupational Therapist referral can assist with activities of daily living in the home and can provide equipment that includes: bed levers, toilet seat frames, stair rails, grab rails, stair lifts, perching stools, shower chairs, hoists, commode, continence pads, slide sheets, mattress and electric/hospital type bed. They can also help with managing fatigue and cognitive changes such as difficulty with memory, thinking and planning.
You can ask your GP or your consultant to refer you to your local physiotherapist or occupational therapist for assessment.
Macmillan provides practical information on physical activity and cancer:
Fatigue can be a common symptom following treatment and when living with a brain tumour. Please find links to useful leaflets below:
Speech, language and swallowing issues can occur when living with a brain tumour. A Speech and Language Therapist can assess your speech and provide you with advice, strategies and aids to help you communicate and join in conversations. They can also assess your eating, drinking and swallowing reflex.
If you are finding it difficult to eat and swallow then a dietitian can get involved in your care. A dietitian can look at your nutritional requirements and provide you with advice to optimise your diet and your health.
You can request a referral to a speech and language therapist or a dietitian through your GP.
Please find a link below to useful information booklet prepared by Macmillan:
Managing your mental health is a crucial part of living with cancer. Hospice Living Well, Day Services and Family Services are available to provide emotional and psychological support.
Please see useful links to resources for counselling, hypnotherapy and complimentary therapy services and living well with brain cancer below:
Cognition, Behaviour and Personality Change can become a problem when living with a brain tumour. Psychologists will assess the changes to your cognition and can work with you and your family together to find strategies to manage and ways of coping with these changes.
There are useful resources to help you understand and manage cognitive difficulties:
Financial Support and Benefits are important when you are living or caring for someone with a brain tumour. Benefits include: Employment and Support Allowance (ESA), Attendance Allowance (AA), Personal Independence Payment (PIP), Blue Badge and Bus Passes.
Brain Tumour charities are happy to provide advice and support with accessing benefits. Please find links below to services that provide information and guidance that may help:
Advanced Care Planning - planning ahead with your priorities and preferences for your future care is an important part of living with a brain tumour. Advance Care Planning includes writing your will, organising Lasting Power of Attorney (LPA), organ donation preferences, and considering decision making about Advance Decision to Refuse Treatment (ADRT) and Cardio Pulmonary Resuscitation (CPR).
Below please find useful documents to help you plan ahead:
Hospices in Hertfordshire:
Please see contact details below for hospices in Hertfordshire who provide Hospice at Home and Day Services for individuals with life limiting conditions:
|Garden House Hospice||01462 email@example.com||www.ghhospicecare.org.uk|
|Hospice of St Francis||01442 firstname.lastname@example.org||www.stfrancis.org.uk|
|Isabel Hospice||01707 email@example.com||www.isabelhospice.org.uk|
|Peace Hospice||01923 firstname.lastname@example.org||www.peacehospicecare.org.uk|
|Rennie Grove Hospice||01442 email@example.com||www.renniegrove.org|
For further help and referrals into the above services, please contact your GP or your local Community NHS Hub:
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