In Charity News

Brain cancer and COVID-19 – the mixed messages around the impact of COVID-19 on cancer. How can we protect ourselves?

Sensationalism in the media

‘Virus could mean extra 35,000 deaths from cancer’ The Times, July 2020

‘Friend died too soon when COVID-19 stopped her treatment – leaving son without his mum’ Daily Mail, July 2020

‘Hydroxychloroquine found to significantly reduce mortality in new COVID-19 study’ International Journal of Infectious Diseases, July 2020

‘WHO discontinues hydroxychloroquine and lopinavir/ritonavir treatment arms of Solidarity trial (a COVID-19 study)’ World Health Organisation (WHO), July 2020

Headlines are scary, contradictory and not always objective – they are meant to be this way; it’s called clickbait. Clickbait entices us to follow that link and read, view, or listen to the linked piece of online content, and is often deceptive, typically sensationalised or misleading.

Living with a brain tumour makes us feel alone, vulnerable and scared. Before the diagnosis, you might have dismissed such headlines as irrelevant and nothing to do with you. Now it’s all to easy to absorb and soak up news related to cancer. Where is the truth? What is fact? What is fiction?

Stopping the negative chatter

This is about self-preservation – how can you stop the negative chatter in your head that clickbait brings? Here are two important ways:

  1. Appraise and moderate your news intake (particularly where it connects cancer and COVID-19). 

We are, as humans, susceptible to doom and gloom in the news. It’s called negativity bias. We take on board the bad news at the expense of the good. This skews our view of the world. Thanks to Facebook, Google and Twitter, news is targeted to specific audiences and the stories that receive the most clicks (often because they are sensationalised) are presented to us constantly. News to the mind is sugar to the body – it’s not healthy. Research tells us that news is a mental health hazard[1].

  1. Understand where brain cancer fits in the bigger COVID-19 picture that the press reports. 

Yes – it is a catastrophe; in the very early days we could only stick a finger in the wind and guestimate how many more lives would be lost to cancer due to resource being diverted to COVID-19 in an already struggling NHS. Now the scientific data is able to forecast a little more accurately and is putting the figure at 35,000 excess cancer deaths. Even one would be too many.
What we do need to bear in mind is that this spotlight on the catastrophic potential number of avoidable deaths has been about the more common cancers (bowel, breast and lung, for example). How many of the stories in the media have been about these cancers?

Let’s put some perspective on this from the point of view of people with brain cancer. Our experience from daily interactions with the community is that actually, little changed in cases of medical urgency. Where an urgent scan was needed, it was given. If a biopsy was needed because it was thought that the tumour was a high-grade glioma, then this was done, if it was appropriate. This is a broad sweeping statement and we know that there are some of you in the community for whom treatment has been delayed, with consequences that may include heightened anxiety and uncertainty and delays in accessing treatment and care to manage non-life threatening symptoms. This is difficult to tolerate now, and unacceptable in normal times, but in recent weeks and months clinical judgement should have been used to offset this impact against the risk presented by COVID-19.

The problem with brain cancer though, is that it is not like other cancers. For start, there are no screening programmes for brain cancer. Secondly, brain cancer isn’t staged like other cancers. Thirdly, apart from a couple of weeks at the height of the pandemic in April, when surgery for people needing a biopsy slowed due to a lack of anaesthetists (they were on COVID-19 wards) the throughput of patients has been more or less steady. Certainly, the numbers of new people joining our community are pretty much back to pre COVID-19 levels.

Remember the good news

It’s too easy to focus on the negative news you’re hearing, but there is good too:

  • New, more effective models of delivering cancer care through cancer hubs have emerged and will be a lasting legacy.
  • A focus on increasing radiotherapy services to meet demand through simple, smart and cost-effective changes has delivered a six-point plan.
  • Workforce regeneration is being addressed, with the NHS now being an attractive opportunity with increased resourcing.
  • Investment in IT systems has enabled remote access for everyone to the healthcare they need. This is an opportunity that is being seen by everyone to transform cancer service delivery, bureaucracy is being swept away, and new models of care that have emerged are providing the footprint that is leading to a coordinated, integrated and adequately resourced NHS.

When in doubt, don’t assume the worst. Ask more questions about the data being presented. And avoid the news!

Our upcoming Thrive webinars will help you to manage the uncertainty, anxiety and stress that living with a brain tumour causes:

Thrive, with an introduction to hypnotherapy (Thursday, 9th July, 3-4.30pm)

Thrive, with the skills to cope with uncertainty (Thursday, 16th July, 3-4.30pm)

[1] Johnstone, WM and Davey GCL. “The psychological impact of negative TV news bulletins: the catastrophising of personal worries’, British Journal of Psychology (13 April 2011).

btpatientscharterofrights instagram scaled
The Brain Tumour Patients’ Charter of RightsCharity News, Press Releases
img 0248
Sarah’s progress with brainstrustPatient story

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