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Treatments for Low Grade Gliomas

One of the most difficult things to come to terms with when you are diagnosed with a low-grade brain tumour is the fact that you may be given different views by different consultants regarding when and how to treat your brain tumour.

Whilst most consultants will recommend surgery as the preferred treatment option for low-grade gliomas at point of diagnosis, it may be that the position of your tumour makes this either difficult or impossible. Other treatment options are likely to be radiotherapy and/or chemotherapy; but not always straight away if your tumour appears stable and is not affecting your quality of life to an unacceptable degree.

This difficult decision regarding when and how to treat your brain tumour depends on a number of factors including:

If it is recommended that you "watch and wait" before undergoing treatment, it may be difficult to accept doing nothing, and many people seek a second opinion before taking this advice (see below).

Being told you have a potentially cancerous tumour, but must go home and wait for it to grow more quickly before treatment can begin, can feel like a devastating blow. However, this time that you are given can be turned to good use. It gives you the chance to discover all the options available before you have to make any decisions about how you want your treatment to proceed, and gives you the breathing space to discover how you can enjoy your life to the full. Some people prefer to think of this as a "watch and live" policy, rather than "watch and wait"!

Our closed Facebook support page offers a wealth of information about treatments, as well as support for patients and carers at any point of their brain tumour journey.  

Advice on obtaining a second opinion in the UK

The process is as follows:

Re. your medical records, in the UK you have a legal right to access your notes and also have a written or taped record of your consultations (this was NICE guidance which went live in Dec 2008). Again ask your current medical team about this as the more information you can give at a second opinion consultation, the better.

Having your scans on disc also means that you can arrange to email them abroad if you would like to do so, although there will obviously be a charge for this kind of private telephone/email consultation.

Ketogenic Diet

Astro Brain Tumour Fund is supporting research into the Ketogenic Diet as a potential adjunct treatment for brain tumours that can be used alongside standard treatments currently available in the UK.  For further details on this exciting venture, See the News section.

Headsmart Campaign - Be Brain Tumour Aware

Each week in the UK, around ten children or teenagers are diagnosed with a brain tumour.  From the appearance of their first symptoms, half of these children will be diagnosed within 12-13 weeks (median).  For the other half diagnosis takes longer, sometimes up to a year or two.  In comparison, similar figures in other countries show that half the cases are diagnosed in as little as 5 weeks. 

The aim of the HeadSmart campaign is to reduce the time it takes to diagnose children and young people with brain tumours in the UK by educating healthcare professionals and the public about the symptoms of brain tumours in this age group.  Reducing the time to diagnosis should reduce the long term disability that many children and young people diagnosed with a brain tumour currently experience.

Go to www.headsmart.org.uk for further information or download a copy of the HeadSmart awareness card.

Top Tips for Surgery from Patients and Carers

Top Tips for Radiotherapy from Patients and Carers

For specific information about treatments for Ependymomas, you may like to visit the website of the American based CERN Foundation (Collaborative Ependymoma Research Network).

For a number of articles about brain tumours and their treatment, you could also visit Docs by Docs Brain Tumor Board website.

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Trustedoctor

Trustedoctor developed PatientLink to help cancer patients create a secure profile of their health condition. Simply, upload all your medical data and securely reach out to any doctor of your preference.

Besides being your digital medical record, PatientLink is also a link to the world's leading doctor specialists. Upon request they will share with you a list of doctors from their research for your condition. You can send the link to any doctors of your interest. Any doctors receiving the shared link would be able to review the case with a click of the mouse in any browser.
trustedoctor.com