Treatments

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

When dealing with people affected by a brain tumour, healthcare professionals are very open to patients asking for second opinions, recognising the sensitive nature of the diagnosis and subsequent treatment and its impact. You should always feel able to approach your healthcare team, either your GP or your specialist, to discuss a second opinion.

Make sure you are aware of the possible delays when asking for a second opinion and what they may mean to your care, diagnosis or treatment plan. Your medical team will be able to explain this for you.

You might consider asking for a second opinion on your treatment and care if:

  • You want to check other experts agree with the original treatment plan your multi-disciplinary team (MDT) has decided on. Your plan should fit in with national guidelines for treating your tumour type
  • Your treatment plan may have been changed and you’re unsure about it. For example, you may be offered a different, newer or wider choice of treatments, possibly as part of an ongoing clinical trial
  • You disagree with your treatment plan

The process is as follows:

  • Find the name of the specialist or surgeon you would like to see. You can do this by asking your current medical team for a recommendation, or by using an internet support group such as our own Facebook support page. Also read through the NHS Choices data about different GP surgeries, hospitals and their statistics, to help you make a decision about where to go for a second opinion
  • Think about what speciality you are looking for:
  • Do you have an unusual tumour and are looking for somebody with experience of that tumour type?
  • Is there an aspect of treatment you want to focus on?
  • If you have been told that your tumour is inoperable, do you want a second opinion on that fact (so you are looking for a neurosurgeon)?
  • Do you now want to focus on radio/chemo options (in which case you need a neuro-oncologist)?
  • If seizures are your main problem at the moment you may need to see a neurologist who focuses more on anti-convulsant medication.
  • Ask your GP for a referral; it is essential that you have a GP referral letter to get your free second opinion (in fact you can have more than one second opinion on the NHS). Once the new consultant has the GP referral letter you should then get confirmation from the new centre of your appointment time/date; although usually it is worth you phoning them directly a week after having seen your GP to ensure that the letter has been received and that you are in the system.
  • GET YOUR SCANS ON DISC FROM YOUR CURRENT MEDICAL TEAM. This is very worthwhile as the NHS may not always be able to transfer this information between treatment centres, though most do have an efficient system in place. The scan discs should cost around £25 and it is helpful if you have the last two most recent scans if possible, in case the tumour has changed in that time. YOU WILL NEED TO TAKE THESE SCANS IN YOUR HAND WITH YOU TO YOUR APPOINTMENT, don’t forget as whoever you see will be unable to comment if they can’t see what is happening, so if there has been a hitch in the transfer of information between treatment centres this could mean a wasted trip. Your GP should have provided a brief outline of your case; and if your current consultant has been involved then he/she may also have supplied some information to whoever is giving your second opinion.

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.

 

 

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.

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

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.
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