Laura’s Story

I’m 25 year old Laura Hymas. I live in Kent with my fiancée, Ben, 31 and our young son Jacob, who is 2 years old.

When I first met Ben four years ago I knew instantly that I wanted to start a family with him; we practically lived together from day one! So it was the best thing in the world when in September 2009 our precious son Jacob arrived. I felt like the luckiest woman on earth! Ben and I began planning to marry and grow our family.

However…

My health slowly had declined over the year following giving birth to Jacob. I felt that I never fully recovered after the birth and over a 15 month period was mis-diagnosed with a range of things including exhaustion, IBS and postnatal depression. I never took the anti depressant pills; I was certain I wasn’t depressed. I was so happy but just exhausted all the time. I was convinced there was something wrong with me and it was so frustrating not knowing what. I was so tired that even with a good nights sleep I couldn’t get up in the morning to take care of Jacob when Ben went to work; I’d stay in pyjamas all day. Ben did all the night feeds. I was just at my wits end and it was causing a lot of stress at home. It wasn’t long before things got worse; later that year in November 2010 I began to lose the feeling and co-ordination in my right arm, and it would twitch whenever I yawned which prompted an urgent MRI scan at the hospital . . .

Diagnosis

The results arrived on Christmas Eve 2010 and shattered our family. I was diagnosed with a low grade brain tumour in my left frontal lobe (in the motor/pre-motor function area) which we later found out was a grade 2 oligodendroglioma. I was put on “watch and wait” protocol. Unfortunately epilepsy followed in February 2011 starting with a grand mal in my sleep and then focal seizures in my right side. It took so long to get these under control I was bed bound for weeks. Being unable to care for my son made me feel so depressed; I felt like my life was slipping away. No words can describe how much this news and period of time affected us as a family. As the seizures had got so much worse my MRI was brought forward a month to April and it was bad news – the tumour had become more aggressive and was enhancing in a small area. A biopsy was performed and revealed that it was now the most aggressive type of (grade 4) brain cancer, a Glioblastoma Multiforme (with oligodendroglioma component). Not only is my tumour inoperable because of its size and location but my oncologist made it fully clear that therapies available to me can only at best slow down the growth of my tumour.

Exploring brain tumour treatment options

However my fiancée Ben and I felt we couldn’t accept that there were no other options. From the moment I was diagnosed in Dec 2010 Ben spent many hours searching for another answer. He read book after book and made many phone calls to clinics all over the world. One call put him in touch with a clinic in Houston, Texas which has a treatment called “Antineoplaston” therapy which is still experimental and in FDA clinical trials (now at phase 3 for brain stem glioma) and unfortunately because of the economic situation (they are not a multi billion dollar pharmaceutical company) is self funding.

Contraverisal brain tumour treatment

The treatment looked very controversial, so Ben got in touch with the clinic and spoke to a number of past patients to hear their experience, some of whom were now cancer free after beating their tumours many years ago.

According to our own research we felt this had the potential to be very effective against my type of cancer without harming my body, therefore I decided this would be the path I wanted to take.

Starting in May 2011 I was prescribed 6 weeks radiotherapy with Temozolomide chemotherapy. I completed the radiotherapy course but had to stop chemo after just a few days because I had an allergic reaction – it made me so sick and gave me a really bad rash. I had an MRI scan after radiotherapy and I was told my radiotherapy had failed because the tumour had grown rapidly throughout the treatment. It was so aggressive that it had tripled in size in just a 13 week period. The doctors were very honest; I couldn’t continue TMZ cycles now because I was allergic to it. So I was told there was nothing else for me but palliative care and that I would be back on the “watch and wait” protocol of a scan every 3 months and given a prognosis of 6-18 months by my oncologist.

My original oncologist was against my decision to go to America for this treatment because it was controversial and not yet approved by NICE, or any medical body. Despite this I really felt that the Antineoplaston treatment was what I wanted for my body and because this treatment was my own personal choice I felt very confident too, almost empowered. I was therefore transferred to another oncologist who was willing to take me on.

As this experimental treatment is in a private setting it is not available via the NHS so we have had to pay for this ourselves at a cost of approximately £60-90,000 per year. Most patients will require anything from 2 to 4 years treatment.

Hope for Laura

Given my situation we felt we had nothing to lose, but we don’t have this kind of money so Ben and I started “The Hope For Laura Fund”. We began fundraising and have been astounded by the generosity and kindness of the general public. Since starting our campaign at least 5000 people have donated to help pay for my treatment and we have now raised £85,000!

I travelled to the Burzynski Clinic in Houston at the end of July 2011 to start Antineoplaston treatment and for Ben to be trained on administering the medicine by the doctors at the Clinic. The doctors were completely honest with me, they said they won’t know IF or how quickly I will respond until I’d been on treatment for at least 8 weeks. We spent three weeks there and then came home and have been continuing treatment (administered by Ben with very close direction from the clinic).

I have now been on antineoplaston therapy since the 8th August 2011. The side effects I have suffered are tiredness, a skin rash which subsided after a few days when I began treatment and a severe thirst! The medicine is rich in sodium and I have to infuse 2 litres of it daily (a dose which lasts 90 minutes every 4 hours 24/7) so I drink approx 5 litres of water daily. This is a very full on treatment; it isn’t making me feel ill but while the pump is running it does affect my day to day decisions like for example going shopping or Ben is driving us to see family far away I need water to drink and a toilet close by! I am carrying around an infusion pump all day connected to my Hickman line in my chest. It’s like having another baby!

To be honest though, for me it’s really worth it. I won’t be connected to the medicine pump forever! I have an MRI scan at a private hospital every 6 weeks. When we came home in August it took me until the middle of October to slowly increase my antineoplaston dose up to “maintenance dose” – this is the dose that Dr Burzynski deems is most effective for my body weight.

Then six weeks later on the 29th November 2011 scan my tumour started shrinking, by 36%. On the 10th January 2012 I had another scan – 56% tumour decrease!

I just had a scan on the 21st February and it was even better news – 77% tumour decrease! The tumour is enhancing so much less now, it seems to be diminishing so fast!

In the meantime my epilepsy has lessened, my right arm and hand is no longer paralysed (because the tumour is so much smaller) and I have much more energy I can bathe my son Jacob, play with him, and do all the things a normal mum does- things I never thought I’d ever be able to do. I even get up in the morning before Ben and Jacob now!

The rate my tumour was growing back in July last year, I shouldn’t be here right now let alone getting better. I exhausted all the standard options available to me, then stepped outside the box. This journey has given me hope that one day I will be tumour free.

So, If anyone was to ask me have I got any regrets or would I change anything? No. I think having this illness has re-defined who I am and made me a much stronger person. It’s been the gift that’s taken so much yet given me so much too. This has been the same for all my family and friends who have shared my journey through thick and thin.

We appreciate every minute of every day.

Who knows what tomorrow holds?

brainstrust’s policy on unapproved treatments, and supporting patients

brainstrust empowers people to take control of their situation. Sometimes people choose a treatment that has not gone through the appropriate, evidenced based, clinical trial which would ensure that this treatment is effective, and most importantly, safe. This is the patient’s right.

We are dependent on our leading, specialist clinicians to be able to deliver the service we do. We cannot afford to lose the goodwill of this key group of people by being seen to support an unapproved treatment which has not been passed by the appropriate bodies for use in the UK.

So this puts us in a very difficult position. We want to support everyone in their choice of treatment; it’s what we do. But equally, we need to be aware that the majority of our patients and carers prefer to follow a care pathway that has been fully tested, that they know is effective for them and one that is safe.

We will therefore support patients with their decisions about their care pathway, whatever these choices are, but we will not support treatments which have not been through the clinical trial pathway and are not approved.

We support the patient, not the treatment.

With brainstrust, you are never alone. Click here to get in touch with one of our trained volunteers who has been through the same experiences you are going through.

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