Second opinions

We are mindful that everyone reacts to a serious diagnosis in different ways. It is your right to seek further opinions, and this will empower some people. Some people would prefer not to exercise this right. Some people prefer to know as little as possible about their diagnosis; some people like to relinquish control of their situation to others. All of these are perfectly normal and acceptable ways of coping. And seeking second, even third opinions can cause confusion and stress. But they can inform, and help with decision-making. They can also be reassuring. Our belief is that you need to be informed to make decisions. And that might mean gathering information and then deciding not to make a decision. That’s a decision too! But our belief might not be your belief. Do what’s right for you.

The key to this is knowing what your options are. And if you need to make doubly sure that the options you have on the table are the right ones for you then think about a second opinion. The brain tumour pathway is increasingly very complex with combinations of treatments and with the better knowledge that we now have about the molecular make up of brain tumours, what is right for one person will not be right for the next. You should also know that you may hear that there are no other options and this can be distressing. What is key is that you are in charge and that the path that you choose is the right one for you. Do not worry about upsetting your clinicians – a good clinician will understand the need to seek other opinions in a diagnosis as serious as this.

There is lots to consider when thinking about seeking a second opinion. Read our Know How on how to get a second opinion here.

If you want to seek further opinions, you will need a copy set of scans. Ask your hospital for these. There are two ways of seeking a second opinion:

Visit your GP and ask for a second, even third opinions. If you want more information about where you might go and who might be appropriate to see, ask us at brainstrust, ask your consultant or your GP.  Get your GP on your side – they can unlock so much for you.

We can also help. Contact hello@brainstrust.org.uk. We can’t give you a second opinion, but we know someone who can – at one of the leading neurosurgical centres in the UK.

And then there is also Trustedoctor. Trustedoctor enables patients to access the right specialist anywhere in the world, regardless of geographical location. The comprehensive doctor profiles provide all of the information that a patient requires to decide for themselves who is the best fit for their specific condition. This resource enables you to:

  • Search a global database for the best doctor for your needs.
  • Upload your documents and a summary of your case.
  • Receive a private, real-time video consultation within the Trustedoctor platform. Each consultation is followed up with a comprehensive written report.
  • Share and discuss documents, scans and more during your consultation with your doctor using our live document viewer.

Trustedoctor specialists are hand-picked by a board of medical experts, based on a number of key factors:

  • Clinical experience
  • Academic impact
  • Endorsement by peers and patients
  • Their clinical network.

Finally, you will be frustrated but don’t expect answers from your healthcare team, unless you ask the question. That’s why it is so important to be informed. Once you accept this you will be able to handle the whole situation much more effectively. It took us a year to get to this point. Seek second, third, even fourth opinions and then try to stand back and draw out the key notes. Your position is not easy – you will be feeling like you are damned if you do and you’re damned if you don’t but at least you will be able to say that any decisions you have made have been informed decisions

Yesterday was the first time, for about a year, that we have been able to talk through my husband’s illness with someone in the medical profession who has been able to answer our questions with a full understanding of his illness.

Thank you so much for recommending that we go and see him.

Julie, carer, Sussex

brainstrust is here to help you get the most out of your team. Find out more about working with your team here.

Did this information make you feel more resourced, more confident or more in control?

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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php