Life with an Acoustic Neuroma

Lin from Kent was diagnosed with an Acoustic Neuroma in September 2020. Nearly two years on, Lin shares her story and experiences of life with an Acoustic Neuroma following recent radiosurgery.

The start of my journey

My initial diagnosis in September 2020, age 53, showed a 12mm Acoustic Neuroma which was monitored under active surveillance for 18 months. In March 2022, I was told that the tumour had grown faster than expected to, around 22mm, which meant it was time to have treatment.

I had a meeting in April with the multi-disciplinary team at Kings College Hospital London where I was advised I could choose between surgery or radiosurgery. I was advised that with surgery, they tend not to be able to remove all of the tumour to preserve the facial nerve functions. Radiosurgery was presented as a less invasive option with the aim of preventing the tumour from growing further. The team advised me that radiosurgery had a 90-95% success rate, which seemed like pretty good odds to me!

 

Making a decision

When I was first diagnosed, my initial feelings were ‘get it out’! After a lot of reading and talking to others who experienced surgery and radiosurgery, I came to realise there was not a simple ‘cure’ and that I had to come to terms with living with my unwanted guest and the impact it had. I was told that if it was removed, it would not cure the symptoms I was having which include deafness, constant and extremely loud tinnitus, discomfort in the mastoid area and veering to the left!

I was aware that surgery and radiosurgery can bring their own challenges and was concerned that I may experience other symptoms but was reassured by my clinical team. I was worried about the swelling that can occur with radiosurgery, and I had been told originally that due to the location of the tumour I was unlikely to be a candidate for radiotherapy treatment. On speaking to my neuro-oncologist, they confirmed that their treatment preference for me was radiosurgery.

Following this conversation, I decided to go ahead with radiosurgery. This was when I panicked that I had made the wrong choice. With the help of some coaching from Molly at brainstrust, I began to feel happier about my choice. During this time, I was starting to worry about waiting too long for the treatment to start given how quickly my tumour had grown. I spoke to my clinical team, and I was given dates for May to start mask fitting and more scans, with the treatment taking place in June.

 

Starting radiosurgery

Due to the size and position of my tumour, I was advised that the radiosurgery would be delivered in three sessions at Guys Cancer Centre in London with 19.5 grays of radiation used. Prior to starting my treatment, I had to go for an MRI scan, a CT scan, and a mask fitting. Thankfully I was able to do this all in one day as we were having to travel to London from Whitstable in Kent. It was a very long day and I would advise anyone having to do the same to make sure you take plenty of snacks and water!

I was worried about travelling from my home to the hospital every day whilst I was having the treatment, so we decided to stay at a hotel near the hospital. This, I believe, made a huge difference to how I felt during the treatment. The treatment days were very hot, so I was very grateful for the hotel air conditioning!  I imagined I would be done in each day, but actually the treatment itself is so easy. The mask was a bit tight and uncomfortable, so I made sure I took paracetamol on the 2nd and 3rd day and drank lots of water afterwards to avoid headaches.

The team at the hospital were so kind, and my husband was allowed in whilst they were setting up the machines, which are amazing. I was in the room having treatment for about 40 minutes each time, which was longer than I thought, but I used relaxation techniques learnt from the hypnotherapy sessions organised by brainstrust. The procedure itself is totally painless and quite fascinating! I did cry a little each time they let my husband back in the treatment room; just out of relief that it hadn’t been that bad at all!   My husband and I ended up having the nicest three days in London, drinking Pimm’s by the river, eating out, seeing the amazing ‘Superbloom’ display at the Tower of London gardens…I felt a bit of a fraud!

I was prescribed 20mg of dexamethasone from the start of my treatment for 7 days, which helped avoid swelling but gave me a false sense of my own superhuman powers; I was swimming in the hotel pool at 6am!  From days 3-6 of being on the steroids, I really struggled to sleep, but they got me through the treatment, and I was able to really enjoy the time in London. The day after I finished my treatment, my husband caught COVID-19 which was a worry as steroids compromise your ability to fight illness. Thankfully I didn’t catch it as I was already banished to the spare room as I was up all night reading and watching movies! I experienced a bit of nausea, but it certainly didn’t stop me from eating!

 

Life after radiosurgery

Two weeks after I finished my treatment, I had a call with the hospital and at the time I was on the beach swimming. I wasn’t experiencing any adverse effects at all at that time and felt great! Fast forward 2 months on, I have had only minor side effects so far. I am certain that is because I have adjusted my life to let myself heal from what is in effect brain surgery but without the scar! I make sure I rest in the afternoon, have taken time out of working and looking after my little granddaughter and I make sure that I plan my days so that if I have a party or an event to go to, I will not have anything on the next day.

I have experienced some heavy pressure type headaches and flashing lights and floaters on the side that I had my treatment; but the extremely hot weather could have contributed to this. I found these symptoms and my balance were often worse if I didn’t have my afternoon nap. I have had some acupuncture sessions, and these have really helped my headaches and my overall wellbeing.

Focusing on really nurturing yourself during this time is crucial to overall healing and wellbeing as we cannot underestimate both the physical effects and psychological effects of knowing we have a brain tumour.

I am in absolute awe of the scientists and engineers who design and make the amazing machines as well as the genius radiographers and consultants who plan and deliver our treatment. I wish I had not worried so much beforehand, it really was okay.

Now it is a waiting game, there can be swelling at the 3-to-6-month mark, and I won’t be scanned again for 18 months  as it can look as if it has grown when it hasn’t. I have had to learn to live with the uncertainty and accept my life is different now, but I have made changes I wanted to make anyway and am grateful to be able to. If you are waiting for treatment or lucky enough to be given a choice of treatments my advice would be to find out all you can about the options, know there is support from brainstrust to help you feel okay about what is ahead, remember to breathe and that you are not alone. I shall be at a music festival in Spain next month, so still living my best life. (maybe with some emergency steroids to hand if needed! ).

Lin x

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