Being diagnosed with a brain tumour is a very challenging event, and it can be draining both mentally and physically. The symptoms and the treatment process can take a heavy toll on the mind and body. However, it is helpful to take some steps to manage your mental and physical health during this difficult time.

The Brain Tumour Charity advises that while any special diets that claim to cure or treat the symptoms of brain tumours should be treated with scepticism, eating well will boost your energy levels and help your body handle the rigours of the treatment process. There is no need to buy lots of expensive food supplements, but what you eat is important. 

Some of the main issues around food for brain tumour patients include sickness, loss of appetite, or increased appetite. A medical professional should be able to advise you further about these issues, and if necessary, prescribe medication such as anti-emetic tablets.

In some cases, a brain tumour diagnosis may lead to weight gain. This can be due to  exhaustion that makes usual levels of physical activity seem impossible, anxiety or depression triggering comfort eating, or because of the side effects of medication. 

It is best to avoid the temptation to snack on sugary foods, or foods that are high in saturated fat such as cakes, biscuits, and fatty cuts of meat. These types of food tend to be highly processed, and are full of additives that are designed to prolong the shelf life of the food. Studies have shown that this can have a detrimental effect on healthy gut bacteria.

The best approach is to include lots of high fibre foods that help you to feel full for longer, and are therefore helpful for maintaining a healthy weight. Examples of high fibre foods include whole grain bread, rice, and pasta, lentils, fruit, and root vegetables. It is also important to eat lots of high protein foods, such as eggs and lean meats. 

The stress of the diagnosis or treatment may also have the opposite effect, causing a loss of appetite that leads to weight loss. This can deprive the body of essential nutrients and vitamins, which is not advisable for anyone with a serious illness. The first line of approach would be to discuss the issue with your medical team.

It may help to switch the time of day you eat your biggest meal for when you feel the hungriest, such as breakfast or lunch, rather than your usual evening meal time. Eating smaller meals at more frequent intervals may also help, or even several nutritious snacks to replace meals. 

If part of the issue is that you feel too tired to prepare a cooked meal, you can still have a blanched diet by cooking some frozen vegetables in the microwave for a few minutes, and adding them to a ready meal such as lasagne or cottage pie.

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Ms Khanum Nishat Marzia was first diagnosed with a meningioma in her home country of Pakistan, back in 2012. A prominent educationist in Pakistan, Ms Nishat Marzia has dedicated her whole life to serving others by pioneering high quality education for children and young adults.

Following the detection of her 19mm meningioma, Ms Nishat Marzia’s family were determined that their mother receive the best possible care available. After meeting with all the neurosurgeons at the hospital in Karachi, Ms Nishat Marzia’s son, Alamgir Khan Feroze, decided that the non-invasive option of Gamma Knife treatment was the best course to follow for his then almost 70-year-old mother.

Alamgir initially identified a Gamma Knife neurosurgery unit in Singapore, but he also wanted a world leading surgeon to operate on his mother, which led him to Sheffield’s Thornbury Radiosurgery Centre. ‘Firstly, this hospital had the latest version of Gamma Knife machine on site. Secondly and most importantly, Dr András Kemeney, was pioneering the use of Gamma Knife for this condition,’ explains Alamgir.

Despite the large size and difficult placement of the tumour, Ms Nishat Marzia’s treatment was successful and between 2012 and 2021, she led a full, active, and happy life. However, in 2022 following a routine scan, a new meningioma was detected on the right side of her brain.

Ten years on, Alamgir got back in touch with the Thornbury Radiosurgery Centre to discover that the Gamma Knife machine had been updated to the brand-new Icon and that Dr Kemeney’s own internationally renowned protegee, Mr Rowe, had taken over his position.

After studying the MRI scans and following an extensive video consultation with the family, Mr Rowe recommended that the meningioma be treated immediately. Alamgir was reassured by Mr Rowe’s expertise and decisive action, allowing him to make a confident and informed decision.

‘The reason I asked so many questions is because I needed something to hang on, that bit of information that triggers me to make a decision,’ Alamgir explained. He said, ‘My mother worked extremely hard her whole life, we owe her a lot, everything we have is because of her. We wanted her to get the best possible treatment.’

Ms Nishat Marzia received her second dose of Gamma knife treatment in November 2022, accompanied by her devoted son and family. The intervention went well, and Ms Marzia was discharged two hours later, to return home and continue her important and pioneering work in education.

A 23 year old football player from County Down in Northern Ireland has spoken about his experience of being diagnosed with a rare brain tumour to the BBC. Ross Larkin, who plays for Linfield F.C. and has played for Northern Ireland under-21 team, was admitted to hospital with  grade-three oligodendroglioma tumour in 2021.

At the time, Larkin was 22 and besides his successful football career, he had just graduated from Queen’s University Belfast with a business management degree. He noticed his first symptoms on graduation day.

Larkin told BBC News NI in a recent interview: “I felt a pressure at the side of my eye – I lost peripheral vision. It’s such a rare disease and for it to happen to me was just hard to take. But I got through it and am stronger for it now.I feel so thankful to everyone for being so good to me.”

Larkin had surgery on the tumour and also received radiotherapy and chemotherapy. He said: “Thank God I had that surgery and it was successful. I’d had no symptoms whatsoever and next thing I’m admitted to hospital for a brain tumour.I just couldn’t believe it. My family couldn’t believe it. It was hard to take.” 

According to The Brain Tumour Charity, oligodendrogliomas are rare, accounting for 2-5% of all primary brain tumours. They are also more common in people aged between 40 to 60 years old, and are slightly more common in men than women. Grade three oligodendrogliomas are fast growing and likely to spread.

Oligodengliomas most commonly grow in the frontal lobes of the brain, but they can also grow in the temporal lobe. The type of symptoms are often linked to the site of the tumour.

Common symptoms of frontal lobe oligodendrogliomas include muscular weakness or numbness in one side of the body, changes in personality and mood swings. Temporal lobe tumours are associated with loss of coordination and issues with speech and memory. Other symptoms include an altered sense of smell and vision disturbances. 

Grade one and two oligodendrogliomas are usually slow growing, and in most cases doctors will actively monitor the tumour rather than treat it straight away. Grade three oligodendrogliomas are malignant and require immediate treatment. This is usually a combination of surgery, radiotherapy, and chemotherapy.

One of the most advanced forms of brain cancer treatment is Gamma Knife surgery, also known as stereotactic surgery. This is not surgery in the sense of making an incision into the brain, but is a method of targeting low dose radiation beams at the tumour site from an external source. 

On the subject of whether he will play football again, Larkin said: “I’m not sure. I’ve talked to the doctors and the brain surgeons. They’re not recommending it fully. But I’m personally not giving up on it. I’ll see how I am, maybe in a year’s time and reassess.”

He added: “I’m doing the Belfast marathon and I want to focus on this at the moment and after the marathon I’ll sit down and I’ll see where I am.”

Larkin is also raising money for the Brainwaves NI charity when he runs the marathon on 30 April.

A new All-Party Parliamentary Group (APPG) have published their report on how the government can support brain tumour research in the UK. The two-year inquiry followed the announcement in 2018 that the government would invest £45m in brain tumour research. 

The report highlighted some serious shortcomings in the funding process, which is hindering research and limiting access to potentially lifesaving clinical trials. Despite the promises, only £15m has been spent on research in the past five years. The report acknowledges the failings, stating: 

“No new treatments and the five-year survival for patients is still just 12%. Brain tumours remain the biggest cancer killer of children and adults under the age of 40. Of the £40 million Government commitment, on 25th January 2023 just £15 million had been awarded since June 2018, with £6 million of this not easily identifiable as relevant to brain tumours”.

Furthermore, The Guardian reports that £6m of the awarded £15m funds were not directly relevant to brain tumours and no new treatments have been developed and trialled. Funding for research on brain tumours amounts to just 1% of all cancer research spending in the UK. 

The Chair of the APPG, Derek Thomas, said that there were fundamental problems in the way the funding was administered, with too much red tape and unclear paths of communication. 

He commented: “[…] our investigations have revealed a concerning lack of deployment of these funds, with just £15m reaching the hands of researchers in the five years since it was promised.”

“We are hearing that the current system is too complicated, it doesn’t connect laboratory work with what is happening in clinics, that there is no up-to-date and robust database for people to understand if they could be eligible for clinical trials, and that far too little of the money previously promised has reached the hands of the researchers who can make a difference.”

He added: “The sad fact is that brain tumour patients do not have the luxury of time. The government must act now in order to recognise brain tumour research as a critical priority, appoint a champion, and ringfence sufficient funds to make a difference.”

The Chief Scientific Officer of the Brain Tumour Research Charity, David Jenkinson, was on the enquiry panel. Sue Farrington Smith, the chief executive of the charity, said: “It really is time the government stopped talking and recognised brain tumour research as a critical priority that needs their leadership and real action.” 

 

How are brain tumours treated?

Currently, the treatment for adult brain tumours include neurosurgery, radiotherapy, chemotherapy, and stereotactic surgery. A combination of two or more of these treatments may be used. 

Stereotactic surgery, sometimes called Gamma Knife radiosurgery, is one of the most advanced techniques. 3D images of the brain are produced, and these are used to precisely target low doses of radiation at the tumour site. The beams are directed to overlap at the tumour site while leaving the healthy tissue undamaged.

Caring for someone with a brain tumour diagnosis can be mentally, emotionally and physically challenging. It is important to access the right support, for your own wellbeing so that you are in the best possible position to care for your loved one. Here are some steps that you can take.

 

Arrange a carer’s assessment

A carer’s assessment is designed to identify the extra help and support you could be entitled to as a carer. It’s free for anyone caring for someone over the age of 18, and can be arranged through your local council’s social services department. If you are caring for a child, contact the children’s department.

The assessment is usually carried out in person, and will take up to an hour. Beforehand, it’s useful to think about all the duties you carry out as a carer, and the impact it has on your life. This can include your employment, your social life, your mental and physical health, and how suitable your housing situation is.

The assessment may make some recommendations or give guidance about how you can access respite care, any benefits that you may be entitled to, and looking after yourself with exercise classes or other activities. They may be able to arrange extra help in the home if necessary, such as a cleaner or gardener to take some of the burden off you.

 

Managing caring and employment

If you are working in a full or part time job role as well as providing care for a loved one, this can be particularly demanding. It is best to speak to your employer about your caring duties so that they are fully aware of your situation. You are entitled to statutory time off work to carry out caring duties.

The amount of time that you can take off and whether this would be paid or unpaid is at the discretion of your employer. There is currently a Carer’s Leave Bill progressing through parliament which will entitle all unpaid carers in the UK to five days of unpaid leave a year.

Some employers may also be willing to offer you a flexible working arrangement, and if you have worked for them for over 26 weeks, they have a statutory duty to consider your request. If you have worked for them for less than 26 weeks, you are still able to request flexible working, but it is not a statutory right.

Discussing your situation openly with your employer from the outset can help you to maintain a balance between your job and caring, and avoid you becoming burned out and potentially having to leave the workforce altogether. In some cases, you may decide that working part time or taking a career break is the best option for you.

If you have to travel with your loved one to hospital appointments, you may be entitled to help with the costs. The NHS has a means assessed scheme and will refund reasonable travel costs for those who meet the criteria.

 

If you are looking for information about Gamma Knife radiosurgery, please get in touch today.

Gamma Knife® is a system of highly accurate, focused delivery of radiotherapy, performed during a day visit, for a number of benign and malignant brain tumours, among other indications. Despite its name, there is no actual “knife” involved and therefore there is no open surgery. In contrast to radiotherapy, Gamma Knife® is delivered usually through a single fraction and there is no need for repeated treatments over weeks.

The process involves four steps:

  • First, application of a frame resembling a helmet.
  • Second, a high resolution, detailed MRI brain scan with the frame on.
  • Third, visualisation, planning and targeting of the lesion(s) using an advanced planning software.
  • Fourth, the delivery of treatment using one of the latest Gamma Knife® models that resemble a scanner. Some more practical details for these steps are below.

Image 1 – The latest Leksell Vantage TM Frame is a major improvement in Gamma Knife® treatments flow as it is light, made from non-metallic glass fibre reinforced epoxy. It is patient-friendly, unobstructive to the face but also allows faster MR image acquisition, up to 50%, with less distortion or artefacts. (Image courtesy of Elekta)


The frame is secured onto the skull with four small pins after local anaesthetic numbs the skull. The patient feels some pressure but not sharp pain. At Queen Square Radiosurgery Centre, we now have the option to use the latest frame model called Vantage TM (Image 1). It is light, does not obstruct the face, and allows faster scanning with fewer artefacts. After planning, the patient lies flat on the Gamma Knife® machine (Image 2). The process is painless, similar to having an x-ray. The duration of the treatment varies, based on the size of the lesion(s) and the number of the lesions, but is typically between 1-2 hours, and is generally tolerated very well.


Image 2 – The Gamma Knife® Perfexion TM. The patient lies comfortably on the table while the treatment is delivered painlessly to the lesions. (Image courtesy of Elekta)


What are the benefits of using Gamma Knife® for brain metastases treatment?

Surgery is typically reserved for larger, single lesions. Gamma Knife®® however, can be used for patients that have more than one lesions, often apart in the brain or in both sides of the brain. Also lesions deep in the brain or close to very sensitive structures can be targeted effectively with Gamma Knife®. Compared to open surgery there is no need for hospital admission or general anaesthesia. Following Gamma Knife® treatment, the frame is removed, and patients can go home within an hour of completing their treatment.


How effective is Gamma Knife® in treating brain metastasis compared to other treatments?

There is vast worldwide experience in treating brain metastases with Gamma Knife®, possibly more than any other type of lesions or tumours. For metrics like overall survival and progression free survival the results are comparable to open surgery. In addition, following open surgery for large, single metastases we now use Gamma Knife® to boost the surgical cavity, thereby delaying recurrences.

Compared to whole brain radiotherapy, Gamma Knife® offers better outcomes. Also avoids brain toxicity and side effects such as cognitive decline observed in groups of patients undergoing whole brain radiotherapy.

Chemotherapy options are generally less effective for brain metastases as the brain has a unique protection system called blood-brain barrier that does not allow chemotherapy to reach tumours within the brain.


What are the risks and side effects of Gamma Knife® treatment for brain metastasis?

Side effects are rare and include infection or bruising of the scalp from the pin sites, local brain swelling that can be mitigated with a short course of oral steroids. More rare risks include haematoma, stroke or seizures. In fact, patients are not allowed to drive for a month following Gamma Knife®.

A well described complication following Gamma Knife® is radiation-induced necrosis. As the photons targeting and kill the metastases, there might be a reaction where the tumour cells die, but continue to upset the brain producing swelling. This complication occurs in approximately 3% of patients. However, as patients survive longer this risk may reach 5% or 10% in patients surviving 3 years or longer.


Is Gamma Knife® treatment suitable for all patients with brain metastasis?

Not all patients with brain metastases are suitable for Gamma Knife®. This depends on the number of brain lesions, the size and location of each lesion, the primary cancer, the severity and spread of the primary cancer, and how well the patient feels and performs in daily activities.

Each case needs to be discussed with an experienced surgeon who has both surgical and Gamma Knife® expertise. In addition, all cases are discussed at a large multidisciplinary team meeting, and the suitability of each patient is examined by a group of specialists including surgeons, Gamma Knife® practitioners, neuroradiologists, and physicists.

The Gamma Knife® radiosurgery centre at Queen Square employs state of the art technology, including the latest Vantage TM frame and operates a large, weekly multidisciplinary meeting where all potential cases are discussed comprehensively.


Mr Samandouras

Consultant Neurosurgeon, Queen Square

Available to discuss treatment options with patients harbouring brain metastases and can be reached here.

March is Brain Tumour Awareness month, to help remember those affected by this challenging condition and to help more people recognise their symptoms early and come forward for treatment. The charity Brain Tumour Research is marking the start of March by asking supporters to light a candle and share their photos on social media.

The charity will also observe a minute’s silence at 11am on Wednesday 1st March at each of its Centres of Excellence and lay a commemorative wreath. Many other charities and healthcare organisations around the UK will be holding fundraising events and awareness raising days throughout the month of March to help support those affected by brain tumours.

It is estimated that 16,000 people are diagnosed with a brain tumour each year, which amounts to 45 people per day. This can have a devastating effect on the life of the patient, and also their family and friends.

The finale of the Brain Tumour Research’s month-long campaign is Wear A Hat Day on 31 March. This is now an established tradition, with top millinery designers pitching in to lend their skills and creativity to the occasion. Anyone who wants to participate and help raise funds can register their school, workplace, or community for a sponsored Wear a Hat Day.

This year’s event has a special royal theme, to acknowledge the coronation of King Charles III and the Queen Consort. There will also be a prestigious contribution from the acclaimed milliner Misa Harada.

Misa said: “I am honoured to be chosen to support such an important charity, and to help raise awareness through the joyous, positive and liberating activities organised, such as Wear a Hat Day and the launch of the brooch which I hope will make people smile.”

All the funds raised will go towards the tireless efforts to combat this devastating disease.

 

If you would like some information about Gamma Knife surgery UK, please get in touch today.

Radiotherapy is a cancer treatment that uses high doses of radiation to treat cancer cells and reduce tumours. The type of radiotherapy will depend on the type and size of the cancer, and other individual circumstances.

There are other kinds of treatment available for cancer and radiotherapy will be recommended only if specialists think it’s the best option for you. Whether or not you decide to go through with the treatment is at your discretion and no decision will be made without your consent to receive treatment.

Radiotherapy requires some preparation, including scans and tests to accurately assess the size and location of the cancer. This will determine the highest possible dose that can be delivered, while avoiding damage to healthy cells as much as possible.

The treatment is usually done daily over the course of several weeks and patients can expect from one to around five doses of treatment in a week. This may vary and will depend on the individual plan based on type, size or location of the cancer. You may receive multiple doses a day up to seven days a week.

This will all be determined prior to you starting treatment and a care plan will be created to ensure you know how much time will be spent at the hospital or radiotherapy centre receiving treatments.

Radiotherapy can be given in several ways from external radiotherapy, internal radiotherapy such as taking a liquid or having an implant, or intrabeam radiotherapy which is usually done during surgery.

External radiotherapy uses a beam of radiation which is directed at your cancer. This requires you to lie as still as possible while receiving the treatment to ensure that it stays in the directed area, however, it usually takes a few minutes up to a few hours and is painless. The measures are taken in place to ensure the treatment is delivered in a safe manner.

Liquid radiation can be given internally via a drink, an injection or swallowing a capsule. This is only used for certain types of cancer such as thyroid cancer. This form of radiotherapy usually requires you to remain in the hospital for a few days as you may be radioactive and you must be monitored as a precaution to avoid putting others at risk of radiation exposure.

Radiotherapy implants can be used to treat cancer by inserting an implant close to where the cancer is either with or without surgery. The time the implant remains in your body depends on your individual circumstances and sometimes the empty implant may stay permanently. Again, you may be required to stay in the hospital or centre for several days during this treatment.

Intrabeam radiotherapy works by a beam of radiation being directed directly at the exposed tumour during surgery and is usually used to treat breast cancer. This is a more invasive form of treatment due to the need for surgery and may require a longer hospital stay while you recover.

There are several side-effects associated with radiotherapy so you must research these before deciding to undergo treatment. Discussing these with your doctor before making your decision can give you a better insight into what to expect both during and after treatment.

The pharmaceutical company Novartis has joined the charity Cancer Research UK’s DETERMINE trial to see if current cancer treatments could be applied to patients with rarer forms of cancer. 

The Pharma Times reported that the DETERMINE trial, which was only launched in November, has received a boost from the major pharmaceutical company joining the study. The University of Manchester and Roche are already part of the trail to focus on multi-drug precision treatments for any form of rare cancer. 

This will open access to a broader range of treatments for adults, teenagers, and children. Who currently have a more limited choice of treatments than other cancer patients when it comes to rarer forms of cancer such as brain tumours.

Brain cancers are among the least common types of cancer in the UK. The NHS reports that about 11,000 people are diagnosed with brain tumours each year in the UK, and about half of these are cancerous.  

The Brain Tumour Charity reports that the most common symptoms of a brain tumour include headaches, changes in vision, seizures, nausea and dizziness, tiredness, and loss of taste and smell. Anyone experiencing persistent symptoms is advised to contact their GP for a check-up. 

If your GP suspects a brain tumour, you will be referred to a specialist for a neurological examination. If the diagnosis is a brain tumour, you will be informed about the various types of treatment. 

The most severe cancerous tumours are usually treated with either neurosurgery, radiotherapy, chemotherapy, or a combination of some or all of these. 

One of the most advanced and least invasive types of brain tumour treatment is a type of stereotactic radiotherapy, also sometimes known as Gamma Knife surgery. The technique directs targeted beams of low-dose radiation at the tumour from various angles. 

Whatever the treatment, whether it be multi-drug precision treatments as in the DETERMINE trial. Or advanced treatments like the Gamma Knife. Institutions, organisations and global corporations are working together to treat cancer.

 

The story of Kate Baker, the woman who went from being a brain tumour patient to a new career as a neuro nurse, is an inspiring read for anyone affected by this distressing health condition. The Brain Tumour Charity recently highlighted Kate’s admirable approach to life.

Kate was first diagnosed with a brain tumour in 2016, after experiencing a range of symptoms including dizziness, nausea, and headaches for the previous 15 months. As she was only 35 at the time, her doctors were not immediately suspicious of a brain tumour, and instead sent her away with antibiotics.

Despite being previously healthy, Kate eventually collapsed one evening and was rushed to A&E. This eventually led to the long overdue CT scan, and resulted in an emergency neurosurgery operation at Queens Hospital. Fortunately, the procedure went well and most of the tumour at the back of her head was removed.

Kate recovered enough to undertake a charity trek to the Sahara in 2019, completing a gruelling 100 miles in challenging conditions.

She said: “All I wanted to do is just say thank you to the wonderful team on Sahara B, and just tell them that this is how amazing that they actually are, that I am prepared to go and walk 100 miles around the Sahara just to say thank you so much, and actually because of you guys I can do this.”

This was not the end of Kate’s incredible story. She began volunteering and training at the hospital where she was treated, eventually being employed as a healthcare assistant. This led to Kate becoming a fully qualified neuro nurse.

She said: “I wasn’t meant to be blue lighted to Queens to nearly die. I was delivered here safely to be a nurse. I can’t remember the defining moment, but I knew it was everything I ever wanted to do. I just kind of wish I’d seen the signs earlier that nursing was what I should be doing and what I love doing.”

Last year, Kate learned that a low grade brain tumour had returned. She opted for Gamma Knife Surgery, which is not physical surgery but a type of stereotactic radiosurgery that focuses radiation beams into the tumour to deliberately damage the tissues. It is highly accurate, meaning that the surrounding healthy tissue is unharmed.

Kate is still undergoing the treatment but hopes to resume her career as a neuro nurse once she is given the all-clear.

“She said: I would always say to myself looking back, the neuro nurse that I now am to the 35 year old girl who’s struggling with her health, ‘Go and demand answers and look them in the eye and say if this was you or a member of your family would you still send me away with antibiotics for somethings that clearly not a sinus infection.’”

Although brain tumours are relatively rare, many people do not recognise the symptoms in the early stages, and it is hoped that inspiring stories such as Kate’s can help to raise awareness of the condition.