Colloid Cyst community hub

The brainstrust colloid cyst page has been my only source of support as I feel it’s been lacking from my Neurosurgeon. It’s a safe place to ask questions and get real answers from people who have or are going through this emotional rollercoaster. I want to thank brainstrust, I feel like they are the only ones who actually care.

– Colloid cyst patient and colloid cyst group attendee

When you’re diagnosed with a Colloid Cyst, it can be a struggle to find the information that you need. We also know that the word ‘cyst’ comes with its challenges; family and friends might not understand the significance of your diagnosis and you may find that you’re unsure whether you can reach out for support or know when to.

We’ve been speaking to our community to find out what resources and support they have found the most useful. On this page you will find links to information that will help you to feel less isolated, more in control and better resourced.

Colloid Cyst information sheet

This information sheet covers what a Colloid Cyst is, common symptoms, diagnosis, treatment options and support.

Click here to download the information sheet.

Information and advice from the community

The information on this page has been put together by our community for people living with a Colloid Cyst. It has been designed to signpost you to support and services that other members of our community have found helpful.

Click here for information and advice from the community.

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Support and events

A brain tumour diagnosis can leave you feeling overwhelmed, out of control and scared.

In this section you will find information, resources and links to events to help you feel more resourced, less alone and less afraid after a Colloid Cyst diagnosis.

Click here to find out more about our support and events.


Community stories

If you or someone close to you has been diagnosed with a Colloid Cyst, it may help to know you are not alone, and you may also learn from others’ experiences.

In this section you will find stories from other Colloid Cyst patients and carers who have written about their experiences.

Click here to read stories from other people living with a Colloid Cyst.

Coaching with brainstrust

Coaching begins with questions; we ask you what you need and what you want to achieve. It’s about collaborating with you, listening to you actively, and helping you build up a toolkit of skills to achieve your goals. With coaching, you focus on specific, definable issues with the intention of creating practical solutions that work for you.

Use our Thrive platform to get in-depth, on-going coaching support from our specialist support team. We can help you gain control of your situation to live the best life you can.

Click the button below to visit our ‘Thrive’ page and begin your coaching journey. Alternatively you can call 01983 292 405 to talk to a support specialist about how coaching could help you.

Coaching testimonial

Help fund our mission

Our work leads to a 20% decrease in loneliness for people we support.

Just £5 a month could help us host our monthly Acoustic Neuroma meetup helping us connect more people with others who understand.

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

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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:


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


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.


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


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

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