Portrait Of Young Smiling Woman Talking To Psychologist At Thera

Tips For Talking To Someone About A Brain Tumour Diagnosis

Talking to someone about their brain tumour diagnosis can be challenging, no matter how well you know them. It is naturally a distressing time, but well-meaning words can sometimes strike the wrong note. Here are some tips on how to speak to someone about a brain tumour.

 

Listen to them first

It might be tempting to offer some glib reassurances that everything will be alright, but this can sound dismissive and unrealistic: no one can predict exactly what lies ahead. It is better to simply listen to a person’s fears so that they feel acknowledged and offer your support and empathy.

However, don’t avoid the subject if someone wants to talk about their diagnosis. They are likely to feel a range of deep and difficult emotions, such as fear, confusion, anger, or sadness. They may simply be in shock and just need a supportive companion. If you don’t know what to say, just admit this rather than avoid the subject.

 

Don’t dismiss invisible symptoms

If a person’s appearance seems to be unaltered by an illness, it can be tempting to tell them that they look well. This might be kindly meant as reassurance or a morale booster, but it can be dismissive of hidden symptoms.

Common brain tumour symptoms that may not be immediately obvious include fatigue, nausea, headaches, memory problems, and loss of taste and smell. Ask someone how they feel and be ready to help if you can. For example, if someone is struggling with tiredness, you may be able to help them out with chores such as shopping or meal preparation.

 

Don’t tell them about someone else’s experience

A common reaction to difficult news is to tell the person about someone else you knew in a similar situation, to try and show that you understand. This can be an attempt at empathy, but everyone’s case is unique, and they will probably have a different journey through their diagnosis and treatment and how they respond to it.

It is best to just let the person know that you are ready to listen if they want to talk about it and leave the specifics about their treatment plan and how they might react to it up to their medical team.

Work on active listening skills to make sure that you are giving the person time to speak, and that you are pausing to reflect on your responses rather than replying with glib phrases such as ‘you are so brave.’

If the person complains about a symptom such as vision disturbances, don’t launch into an anecdote about your own eyesight issues or those of someone you know. Just acknowledge how the person is feeling and offer any practical suggestions and support that you can.

Keep in mind that the impact of a brain tumour can last beyond the treatment.

Just because someone has finished their treatment for a brain tumour, it doesn’t mean that the normality has returned. They might be experiencing side effects, so it is important to keep up with your support.

 

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

Female Doctors Hand Pointing At X-ray Or Mri Medical Imaging Wit

Welsh Actor Craig Russell Speaks About Brain Tumour Surgery

The Welsh actor Craig Russell has recently spoken about his experience of being diagnosed with a brain tumour and his recovery process. Craig, aged 45, is the star of the hit Netflix drama Queen Cleopatra, and has acted in, written, and produced countless other films and TV shows.

He was at the peak of physical fitness when he received the devastating news in February 2023, after weeks of experiencing unexplained headaches, confusion, vision disturbances, and memory loss. He eventually went to see his GP, who sent him for an immediate MRI scan after noticing that he was going blind in his left eye.

The scan revealed a large and slow growing brain tumour that was putting pressure on his skull and was in danger of causing him to have seizures and strokes. Craig was booked in for urgent surgery, where most of the tumour was removed during a complex six-hour operation.

Craig told Wales Online: “With the tumour, it was my wife who first started noticing I think. Kate has just been the best, she’s the best anyway, but she’s been the most incredible support. That’s why all of this has been so easy compared to what it could have been because she’s just been wonderful, and she knew there was something not quite right.”

He added: “I was different, and I started to notice it. I think it was November, I went into the spare room to put something away, and I couldn’t remember how to get out of the spare room.”

“And then, a couple of weeks after that, I was driving one of the kids back from a children’s party and on one of the last roundabouts before our house, that I’ve been going around now for eight years, and I took the wrong turn. My son had to direct us home.”

And then I started getting these headaches at the back of my head every morning waking up with a very specific headache.”

After his surgery, doctors advised Craig to move around as much as possible to aid the recovery process. They were slightly concerned about the swelling on his brain that hadn’t gone down. However, fitness fan Craig took up a gentle exercise regime, and fortunately for the time being his condition will just need monitoring rather than further surgery.

In some cases, parts of a brain tumour that cannot be removed by traditional open surgery may be treated with stereotactic radiotherapy, sometimes also referred to as Gamma Knife surgery. This is a process that uses highly focused radiation beams to deliberately damage the tumour cells, while causing minimal harm to the surrounding healthy tissue.

This type of therapy is less invasive than other surgeries and has fewer harmful side effects than chemotherapy. It is available at several treatment centres throughout the UK.

 

If you are looking for Gamma Knife surgery in London, please get in touch today.

Scientist In Laboratory, Researcher Doing Investigations With Te

Brain Tumour Researchers Welcome Faster Diagnostic Tests

The Brain Tumour Charity (BTC) has welcomed the NHS initiative to work to a 10 day turnaround to deliver the results of urgent cancer diagnostic tests to patients. This will ensure that those who need treatment will be able to access it sooner, and those who don’t will have their anxious waiting time reduced.

However, the BTC points out that a recent survey has shown that 15% of respondents said that their diagnosis took over six months from their first contact with a medical professional about symptoms. More concerningly, for 10% of respondents, their diagnosis took over a year.

To improve this unacceptable situation, the BTC calls for a Best Practice Timed Pathway for patients presenting with possible symptoms of brain tumours. Currently, there is no consistent approach as symptoms can be varied.

The outcome of initial medical appointments also varies between regions and if the patient presented at A&E, a GP surgery, or elsewhere. The BTC calls for the Non-Specific Symptoms pathway to be expanded to include the vaguer symptoms associated with brain tumours.

Furthermore, the BTC points out that many suspected brain tumour patients are sent to secondary care by GPs rather than for CT scans, ultrasounds, or brain MRIs. They call for universal direct access via GPs, and for extra investment in the workforce so that the resources are in place to offer more direct diagnostic services.

According to a recent NHS press release, record numbers of patients are now being checked for cancer, with 9 in 10 people with a positive diagnosis commencing treatment within one month.

Dame Cally Palmer, NHS National Director for Cancer, said: “It is a testament to the hard work of NHS staff that we are seeing and treating record numbers of patients for cancer, and have made significant progress bringing down the backlog and achieving the target for diagnosing three quarters of people within 28 days – all despite huge demand and pressures on the system.”

“Lives are saved when cancers are caught early and while we’re already diagnosing a higher proportion of cancers at an earlier stage than ever before – we want to ensure we’re making the absolute most of the diagnostic capacity in our community centres and hospitals.”

Minister Helen Whately said: “Catching cancer early saves lives which is why we’re prioritising early diagnosis and supporting the latest NHS drive to speed up the return of test results.”

“We have also opened 100 community diagnostic centres and these one-stop-shops have delivered over 3.6 million additional tests, checks and scans. We remain focused on fighting cancer through prevention, diagnosis and treatment backed up by vital funding and research.”

“We know there is more to do, and our ambition is to diagnose 75% of cancers at an early stage by 2028 which will help save tens of thousands of lives for longer.”

In adults, some of the main symptoms of a brain tumour include headaches, changes in vision, seizures, fatigue, nausea and dizziness, and loss of taste and smell.

 

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

London, UK - October 3, 2021: Lots of people running in London Marathon. People cheering the sportsmen

London Marathon Runners Raise Awareness Of Brain Rumours

Running the London Marathon is a huge personal achievement, but for some it was also an opportunity to raise money for brain tumour research. The Brain Tumour Charity recently reported on the stories of brave competitors who completed the race for very special and compelling reasons.

Among these runners is Stefan Gilford, 31, from Weymouth, who is a part time firefighter and gym instructor. Stefan was diagnosed with an acoustic neuroma brain tumour in December 2021. He initially struggled to get a diagnosis after reporting hearing loss in his right ear, as he was told it was caused by a perforated eardrum.

Acoustic neuromas are also known as vestibular schwannomas, and are benign (non-cancerous) brain tumours. They grow on the nerve connected to hearing and balance. Hearing loss, usually in one ear, is one of the main symptoms. Patients may also experience tinnitus and a spinning sensation known as vertigo.

Acoustic neuroma treatment depends on the size and position of the tumour. They usually grow slowly but can be problematic if they grow to a large size, and should be treated before this stage where possible. If the tumour is small it may just be monitored with MRI scans. Larger tumours may be removed with surgery.

Another option for treating smaller tumours is stereotactic radiosurgery, also known as Gamma Knife surgery. This is not the same as traditional surgery that involves an incision directly into the skull. It is a method of targeting the tumour with precise beams of radiation that reduce the tumour cells and leave the surrounding healthy cells intact.

Fortunately, although Stefan’s tumour was quite large, doctors were able to remove 95% of it through surgery. The remaining tumour is being monitored by doctors, who will treat it with radiosurgery if it begins to grow.

Stefan said: “The diagnosis was the toughest challenge I have ever had to go through, and put incredible amounts of stress on me and those around me. I would never have imagined that I would receive such news, especially at 30-years old.”

He added: “Until I was directly impacted, I had no idea how common brain tumours were and the high percentage of lives they take every year, especially those who are aged under 40.”

Stefan was not a regular runner before his surgery in March 2022. However he was determined to take on the marathon challenge, both to prove his own fitness and to raise funds and awareness for brain tumour research.

He said: “I’ve been very fortunate to have bounced back quite quickly after my surgery. I was warned that recovery could take a long time, but luckily that hasn’t been the case with me. After taking things easy at first, I built up my fitness again gradually and was able to return to work after two months.”

Despite the fact that brain tumours are the biggest killer of children and adults under 40 of all types of cancer, comparatively little funding is allocated to research and clinical trials in this area.

Piggy Bank With Stethoscope. Money Health Check Concept. Health

Petition Launched To Ring Fence Brain Tumour Funding

The Charity Brain Tumour Research has launched a petition to call on the government to ring-fence £110m of current and future funding for brain tumour research. The national investment represents just 1% of all cancer research funding in the UK, despite the fact that brain tumours kill more adults under 40 than any other type of cancer.

The charity calls for a strategic plan that prioritises brain tumour research and ensures that it is adequately resourced and funded, culminating in over £35m of investment by 2028. This would bring brain cancer into parity with other types of cancers such as lung, breast, and bowel cancer.

Just before Brain Tumour Awareness Month in March this year, it emerged that just £15m of a promised £40m of government funding for brain tumour research has been spent. This led to a highly critical All Parliamentary Group Report (APPG) being published and debated in the House of Lords.

The issue was also widely reported in the national press, including The Guardian. Meanwhile, a petition containing 800,000 signatures was delivered to parliament in March by a coalition of cancer charities and campaigners under the banner One Cancer One Voice.

Despite the challenging conditions that the NHS has faced in recent years, there has been some positive progress, as the government reports that cancer survival rates for the first year of diagnosis over the past 15 years between 2005 and 2020 have improved by almost 10%.

Health Minister Helen Whately said: “These figures are highly encouraging and support those released earlier this year which show improved survival rates across almost all types of cancer. They are evidence of the great strides being made by the NHS, scientists and our incredible cancer charities.”

She added: “We are laser focused on fighting cancer on all fronts – prevention, diagnosis, treatment, research and funding – and have opened over 94 ‘one stop shops’ so people can have quicker access to tests, scans and checks.”

“We are also taking a vaccine taskforce style approach to cancer research to develop new immune-based cancer therapies, including cancer vaccines, as well as producing a major conditions strategy.

“We know there is more to do and early diagnosis is crucial to improving survival rates even further. Our ambition is to diagnose 75% of cancer at an early stage by 2028 which will help save tens of thousands of lives for longer.”

The NHS has outlined details of its early diagnosis strategy to raise awareness of cancer symptoms and to encourage people to come forward as early as possible. The Faster Diagnosis Framework is part of the Long Term Plan (LTP) for NHS England. It will aim to deliver a faster and earlier diagnosis for patients.

The NHS aims to achieve this through an improved patient experience with more streamlined care and support across primary, secondary, and community settings. It will also work to increase capacity in the system. Since July 2021, 94 new diagnostic centres have carried out over 3.3m tests, checks, and scans.

 

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

3D render of a man with strong pain in head - Grayscale Image

Can Diet And Lifestyle Help To Manage Brain Tumour Symptoms?

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.

If you are looking for information about acoustic neuroma treatment, please get in touch today.

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Case Study – Ms Nishat

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.

footballer

Footballer Speaks Out About Rare Brain Tumour Diagnosis

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.

Young nurse consoling little girl patient lying on bed in hospital ward

Parliamentary Group Publishes Report on Brain Tumour Funding

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.

Older Sister Playing Caregiver Role

Practical Tips To Feel Better Supported In A Caregiving Role

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.