Need help now?Navigating your pathway
I am a great believer in the bigger picture, then you know what your options are! And of course, you can always alter course. Having a route mapped out doesn’t mean that you have to stick with it. Once your brain tumour has been diagnosed your case should be discussed at a multidisciplinary team meeting (MDT meeting). This is a key recommendation of the 'Improving Outcomes Guidance' is that:The care of all patients with brain and other central nervous system (CNS) tumours should be coordinated through a specific model of multidisciplinary assessment and care:
- a designated lead in every acute trust
- a neuroscience brain and other CNS tumours MDT
- a cancer network brain and other CNS tumours MDT
- a key worker
As a number of options will be available for your treatment these meetings are very important and should be the minimum which can expect. The MDT will discuss your care from different angles, weighing up the best pathway for you.
Treatments will depend on the type and grade of brain tumour. The most common forms of treatment are:
- Watch and wait
- Surgery
- Drug therapy (chemotherapy, immunotherapy, gene therapy)
- Radiotherapy
Neo-adjuvant therapy is treatment prior to surgery which will ‘downstage’ the tumour
Adjuvant therapy is treatment after surgery in order to lower the risk of tumour recurrence.
Your treatment plan will either be radical (curative) or palliative:
Radical (curative): the intent is to cure the patient by whatever means are available.
Palliative: the intent here is to relieve the symptoms when a cure is not possible. Remember, some patients can live for many years with all kinds of conditions. Sometimes it is better to look after the symptoms because to deal with the cause may be too damaging.
However, it would be nice to think that you might be included in these decisions too! So these are the things that you should consider, to make sure that your care pathway belongs to you and not the MDT.
- Your wishes regarding your treatment
- The type of tumour
- Where it is located
- The size of tumour
- The risks and potential benefits of available treatment options
- Your overall health
- Your age
- The type of healthcare services available and your ability to travel
- What other options are available outside your locality, even country
A typical plan might look something like this:
Healthcare professionals should have face-to-face communication with patients, their relatives and carers at critical points in the care pathway to discuss diagnosis, prognosis, treatment options (including no treatment), recurrence and end-of-life care (NICE Service Guidance June 2006).
No doctor will ever be able to give you the definitive answer and don’t believe the doctor that promises you the earth. ‘Find the one who views your glass as being half full – and believes that with the best treatment you will do well’. Dr Peter Black: Living With a Brain Tumour.
Second opinions
or even third, fourth fifth opinionsPatients and their families tend to respond to their healthcare practitioners in one of two ways. They either trust them implicitly and are very happy and confident that the advice they are receiving is the right advice, or they may be uncertain about the way forward, not feel overly confident in what they have been told and come away from consultations with more questions than they went in with. And these attitudes can change over time. The one thing I do know is that if we hadn’t sought second, third and even fourth opinions, our daughter would not be with us now.
Initially we were happy. But after about 9 months I felt that we weren’t getting anywhere. The consultations became increasingly adversarial and argumentative and I was labeled the ‘Scary Mum’. Not good. I could put up with being argued with, but when the consultant began to deny the symptoms my daughter was describing to him, we felt ‘enough’. She was sleeping 16 to 20 hours a day because this was ‘normal’, the strange men in her room at university were just that – ‘strange men in her room’, and the fact that she could smell her flesh burning was just that - she was on fire. Nothing to do with her seizures caused by her brain tumour. It was at this point that I stopped believing that the doctors knew the answers – they didn’t and don’t – and from this time forward everything suddenly became easier. I stopped expecting them to deliver when they couldn’t (but no blame involved); I just understood that medicine is not a science and that I was the one who was out of step in expecting that it would be. And this relaxation opened more doors.
You need to seek as many opinions as you feel are necessary. Then you step back, look at the information you have and try to identify any headlines. Are two out of the three consultants you have seen recommending a way forward that differs from the third? If so, follow this lead. Maybe seek yet another opinion to confirm or deny your current line of thinking. It may be that the first opinion was right after all, but how much better will you feel knowing that you did your research and that whatever decisions you make, were made with full knowledge – it was an informed decision and even if the outcome is not what was expected, you would not have changed your mind at that point.
So – how do you go about seeking more opinions? If you don't feel comfortable asking your consultant, ask your GP. But there are other ways in. If you are happy to go privately, then you don’t need a GP referral, but you will need to know that the referral that you are seeking is a good one (brainstrust will pay for you to have a second opinion at one of the neurosurgical centres which supports our work, such as the National Hospital for Neurology and Neurosurgery, or at the Wessex Neurosurgery Centre). Ask your current consultant and don’t be afraid of upsetting them – they wouldn’t be doing their job if they couldn’t advise. Use the internet, talk to other people involved in the brain tumour community, talk to brainstrust and talk to your GP. You need to know that you have the best information so that the decisions you make (and that could be a decision not to make a decision!) are informed and right for you.
Some key points to remember:
- Don't be worried about offending your doctor by asking for a second opinion. No competent doctor should be angry at this and if they are, then maybe they aren't the right doctor for you.
- At worst, obtaining a second opinion will be a waste of time - but the upside potential is huge. A concurring opinion can provide reassurance, comfort and certainty.
- You may have to travel some distance to get the right second opinion, so consider your ability to travel.
- The patient decides what to do. Risk and uncertainty can help the decision. There are no wrong and right opinions and decisions must be made on what is being heard at the time. If, in the future, the decision taken wasn't the right one - it was right, at the time it was made.
- Factors that could influence the decision could be potential outcome, quality of life and how risk averse the patient is. Whatever the decision, the patient will need support once it has been made.
Good luck!
The Neuroscience Multidisciplinary Team (MDT)
The neuroscience MDT should review the case history and images and suggest a management plan which should be communicated back to the appropriate consultant. This plan might suggest referral of the patient for neurosurgical or oncological management or continuing care locally.The neuroscience MDT should meet at weekly intervals to review all new patients and advise on the initial management of their disease in accordance with national cancer waiting times standards (NICE Service Guidance June 2006)
Staff working in multidisciplinary teams are likely to develop higher levels of knowledge, skills, expertise and experience because they share their thinking. This means that higher quality outcomes are assured. There will be a range of healthcare professionals at a MDT meeting, and at the moment the set up may be different in different geographical areas, depending on the resource available. There are still a significant number of patients in the UK who are being denied first line access to proven treatment but the outlook is changing with the opportunity for patients to receive appropriate treatment. I wish we didn’t have to say this, but it is the case and our experience shows that the quality of care pathway can vary hugely.
The best practice should look like this, so that you don’t become ‘lost’ in the system:
Brain and other central nervous system (CNS) tumours patient pathway
Core members of the neuroscience MDT include:
| MDT member | Description |
| Neurosurgeon(s) | A specialist neurosurgeon who spends at least 50% of clinical programmed activities in neuro-oncological surgery and is regularly involved in dedicated speciality clinics caring for these patients. |
| Neuroradiologist | A consultant radiologist with at least 50% of clinical programmed activities spent in the practice of neuroradiology. |
| Neuropathologist | Registered as a Neuropathologist or histopathologist and has specialist expertise in neuro-oncology.. |
| Neurologist | A consultant neurologist with expertise in neuro-oncology, epilepsy or neuro-rehabilitation. |
| Oncologist | A clinical oncologist with a special interest in tumours of the CNS |
| Clinical nurse specialist | A nurse with specialist knowledge of CNS tumours and skills in communication |
| Palliative care | A healthcare professional (normally a member of the palliative care team) with experience and expertise in the provision of palliative care services for patients with CNS tumours |
| Neuropsychologist | A clinical neuropsychologist with a special interest in tumours of the CNS |
| Specialist allied health professionals (AHP) | Representative of AHPs, including occupational therapy, physiotherapy, speech and language therapy, dietetics and others as appropriate, who have knowledge and experience of dealing with the patient group, with responsibility for education and liaison with other local AHPs |
| Coordinators | An administrative post responsible for coordinating patient registration with the neuroscience MDT and data collection |
| Others as required | E.g. representatives from ward nursing, community palliative nursing, psychology/psychiatry and epilepsy nurse specialists |
For more information about some of these professionals have a look at our "Have you lost your way booklet".
Date published: 17-05-2009 Last edited: 17-05-2009 Due for review 31-01-2012
