Coming to terms with my benign tumour diagnosis

Tina is a mum of 2, foster carer and animal lover who enjoys travelling, film and all things nature. In April 2022 Tina was diagnosed with a non-malignant brain tumour. Tina talks to us about her brain tumour journey so far.

Tina PapworthIt was 4th April 3.15pm. I remember because I looked at the clock in my room whilst my surgeon was telling me the news. It was meant to be a 4pm appointment, so when the call came from ‘no caller ID’ at 3pm it took me by surprise. I wasn’t prepared as I had planned to be.

At 3:15pm the surgeon said “well you have a rather large tumour on your brain, its benign.” I asked if that was the good or bad one, he said “It’s non-cancerous.” He continued, “Its deep and tricky but we will operate, unless you don’t want surgery for some reason?”

At this point my mind went blank and I felt numb. It felt like I was in a nightmare. I then just tried not to cry and to concentrate and remember all that he was saying, I had no pen or paper to write anything down.

 

I felt overwhelmed, lost, petrified and alone all at once during the phone call. When he spoke of the side effects the first one is loss of life. I know they have to say it, but it frights the bejezzeus out of you! Then followed: stroke, double vision, loss of use of left facial muscles or side of my body, swelling of eyes, brain, leakage through the nose etc.

All-in-all I felt scared, petrified – I didn’t know the first thing about brain tumours except what I’d seen on TV!

I started to come to terms with my diagnosis when I was able to get information about my specific tumour. Google is not your friend! I tried not to compare myself to anyone else’s tumour, they are all so different.

I cried. But I also stayed positive.

Tina and her familyMy family and friends were an immense help, but I also took to social media to document and share my journey.  Through this I found lots of people who had brain tumours and they reached out to me! This was such a relief, actually talking or writing to people who are alive and doing well after surgery.

This was how I found the brainstrust too! It was a week after my diagnosis when I found brainstrust, I joined the brainstrust Facebook groups. A lovely lady called Molly started to email me and made me feel much better about my situation. She is like my guardian angel, and I no longer felt alone.  Although you have your friends and family around you, I found it easier to talk with strangers and the information Molly gave me was so relevant and made me feel more supported than I had before

This was how I found the brainstrust too! A lovely lady called Molly started to email me and made me feel much better about my situation. She is like my guardian angel, and I no longer felt alone.

When I joined the brainstrust Facebook I ordered a brain box. This has a plethora of information that you can tailor to your specific tumour and also a list of questions that you can ask your clinical team.  I found all of this really helpful.  I carry my ‘Brain Box’ folder to every appointment, its so handy to keep a record of everything.

It took me a few weeks, but I am now feeling even more positive about it. I think it’s important to remain positive no matter what the prognosis.  I went to a very dark place for a couple of days, and I’d much rather never be there again!  Its ok and even important to feel scared, anxious but don’t pack a bag and stay there! Let yourself feel, then move on and enjoy your day!

My advice for others going through a similar situation to me…

Tina Papworth It’s ok, your tumour is specific to you, don’t compare your tumour with anyone else’s. Be happy! Life can go on as normal, but it will never be the same.

Be brave but allow yourself to be scared too.  Feel all the emotions then become a Brain Tumour Warrior and fight!!

Get as much information as you can. Try to stay positive, its hard but you can do it.

It’s not just your tumour, it belongs to all your loved ones, family, and friends. They will all being going through this with you, you are not alone.

 

 

Please remember brainstrust is always here for you, whenever you need us. You can call us 24/7 on  01983 292 405 or email us on  hello@brainstrust.org.uk. You can join the brainstrust community Facebook group by clicking here. If you’d like to order a brain box like Tina, please click here.

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