Campaigners Launch Manifesto For Rare & Less Common Cancers

Cancer52, an alliance of charities representing rare and less common cancers, has launched a manifesto to raise awareness and improve outcomes for people affected by these conditions. The initiative is supported by the charity Brain Tumour Research (BTR), who campaign for better funding for research into brain tumour treatments.  

The manifesto, titled The Other Half: A manifesto to transform outcomes for people with rare and less common cancers, was launched at a reception in the House of Commons, Westminster on 16 April. The reception was attended by member, patient representatives, and MPs, and hosted by former Health Minister Will Quince, BTR reports. 

Mr Quince said the focus needed to be on public awareness, knowing the symptoms, early diagnosis and treatment pathways. He added: “The life sciences are a real passion of mine, and we need to make sure this sector flourishes – which means patients here in the UK are getting the latest treatments and therapies.”

Almost half (47 per cent) of cancers diagnosed are rare or less common, and they account for 55 per cent of all cancer deaths in the UK. According to Cancer52 CEO Jane Lyons, it was “the passion of the Cancer52 community that brings the charities together, under so many circumstances, to be heard with one voice”.

The manifesto sets out three main priorities. The first is to reduce the number of deaths from rare and less common cancers by 15 per cent by 2040; the second is to increase the early diagnosis of rare and less common cancers; and the third is to call for a new national mission for rare and less common cancers, which puts patient involvement at the centre.

There are over 200 different types of cancer, and according to Cancer Research UK, rare cancers are classed as those that affect a smaller number of people, starts in an unusual place in the body, or is of an unusual type and needs special treatment. However, there is no cut and dried definition of what a rare cancer is. 

Examples of rare and less common cancers include brain tumours, kidney cancer, non-Hodgkin lymphoma, pancreatic cancer, and melanoma skin cancer. It can take longer to diagnose these types of cancers because the symptoms might be more unfamiliar to doctors and less recognisable. 

These cancers may also require more tests to confirm the diagnosis, or the test might need to be sent to a specialist laboratory for analysis, and then further specialist tests might be required. All this can lead to a delay of several weeks before the diagnosis is confirmed, leading to possibly crucial lost treatment time for the patient.  

Furthermore, the doctor may need to consult about the cancer with other specialists nationally or internationally, if they lack expertise in a particular area. It may also take longer to work out an appropriate treatment plan and assemble an experienced medical team. 

In a statement on their manifesto, Cancer52 say: “We call on the next Government to take action to reduce deaths and address the needs of the growing numbers of people with rare and less common cancers. Core to this ambition is a need to minimise the impact of inequalities on people with rare and less common cancers.”

It continues: “There are currently more deaths from rare and less common cancers than there are new cases in the UK. Cancer52 is aligned with Cancer Research UK’s call to reduce deaths from all cancers by 15% by 2040.”

“This goal is even more challenging for rare and less common cancers as incidence is increasing and survival improvements are slower than the four most common cancers.”

“Over the past decade, mortality rates for the four most common cancers have fallen around twice as fast as rare and less common cancers combined. By reducing the mortality for rare and less common cancers by 15% by 2040, around 80,400 deaths could be avoided compared with current projections.”

BTR’s  Policy and Public Affairs Manager Thomas Brayford said: “We welcome Cancer52’s latest manifesto, which helps to shine a light on rare and less common cancers. The other half now needs to be listened to.”

It is hoped that the manifesto will lend further support to the ongoing work of the All-Party Parliamentary Group on Brain Tumours. 

If you would like some information about brain tumour treatment, please contact Mr George Samandouras of Amethyst Radiotherapy.

How Can You Manage The Symptoms Of An Acoustic Neuroma?

Acoustic Neuroma (AN) is a subtype of vestibular schwannoma, a form of slow-growing brain tumour that develops in the area between the ear and the brain. It is non-cancerous, but it can cause life-changing symptoms. The biggest challenges faced by people with AN are often hearing and balance disturbances. 

According to the Brain Tumour Charity, ANs account for about 8 per cent of all primary brain tumours. They can be diagnosed at any age, although they most often affect people between the ages of 40 and 60. The majority of ANs occur in people with no family history of these types of tumours, and it is not fully understood what causes them.

The most common symptoms of ANs are hearing loss, often on one side; tinnitus (ringing or noises in the ear); numbness or weakness in the facial muscles; dizziness or vertigo; difficulties with balance; persistent headaches; vision disturbances; a hoarse voice or difficulty swallowing; and poor limb coordination on one side of the body. 

The symptoms are caused by the tumour pressing on the balance, hearing and facial nerves. If the tumour remains untreated, it may become large enough to press on the brain, which can cause more serious problems.

How are ANs diagnosed?

If you are concerned about any of the above symptoms, you should visit your GP. If your doctor thinks that your symptoms might be caused by an AN, they will arrange some tests and refer you to a specialist. The medical tests may include a magnetic resonance imaging (MRI) scan, a computerised tomography (CT) scan, and a hearing test.

How are ANs treated?

The treatment for AN may depend on the type, location  and size of the tumour, the severity of the symptoms, and the general health of the patient. They are often very slow growing, and therefore require regular monitoring rather than active treatment. Larger tumours may be completely or partially removed by surgery.

Smaller tumours or any parts of the tumour remaining after surgery may be treated with stereotactic surgery. This is not traditional surgery that involves incision, but is a method of delivering precisely focussed radiation beams from an external machine to destroy the tumour cells. 

Research into new brain tumour treatments is ongoing, but it is a sector that has been historically underfunded, particularly in the field of non-cancerous tumours. 

Managing the symptoms of AN

One of the biggest issues faced by people living with AN is difficulty with balance. The British Acoustic Neuroma Association (BANA) explains that regular exercise can help to manage the problem. During April, the charity is running a campaign to raise awareness of AN and asking participants to complete 5,000 steps a day for 10 days.

In a statement on their website, the charity comments: “Living with conditions that affect balance function can be challenging, but incorporating regular movement into your daily routine is crucial for maintaining and even improving balance.”

“Movement helps to strengthen muscles, improve coordination, and enhance proprioception, which is your body’s ability to sense its position in space. By engaging in activities such as walking, stretching or yoga, you can build strength in the muscles that support balance and improve overall stability.”

“Movement can also help to boost confidence and reduce the risk of falls, ultimately leading to a better quality of life.”

Sometimes, an AN may grow very slowly over a number of years, and they may be diagnosed after a person has been noticing difficulties with their hearing. The Royal National Institute for the Deaf (RNID) runs a free online hearing test that takes just three minutes, and the charity offers further support and advice for people living with hearing loss.

Deaf Awareness Week is coming up on May 6-12 this year, with the aim to raise the visibility of the challenges faced by people with hearing impairments. Unfortunately, deafness can still carry a stigma, and lead to discrimination at work, and difficulties with communication and personal relationships.

Hearing impairment is estimated to affect about 12 million adults in the UK, and it can cause loneliness and social isolation, as well as making everyday life and employment difficult. There are technology assistive devices that can help people with hearing loss, and some people may learn sign language or lip reading. 

If you would like some more information about acoustic neuroma treatment, please contact Mr Patrick Grover of Amethyst Radiotherapy.

Study Finds Obesity Medications May Reduce The Risk Of MS

A new study based on real-world data has found that obesity medications that are approved for medical use in the UK may also reduce the risk of developing multiple sclerosis (MS). Healthline News reports that the drugs, which are currently used to treat type 2 diabetes and aid weight loss, may be repurposed as a potential MS therapy. 

MS is a chronic autoimmune condition that affects the central nervous system. In people with MS, the immune system erroneously attacks the protective covering of the nerve fibres (known as myelin) which is located in the brain and spinal cord. This disrupts the flow of electrical signals between the brain and the rest of the body. 

The disruption to the central nervous system can lead to a range of symptoms, which may get progressively worse over time, or relapse and recur in cycles. Common symptoms include poor coordination and difficulty walking; tremor; fatigue; dizziness; vision disturbances; and cognitive changes such as problems with memory and concentration.

There is currently no cure for MS, although research is ongoing to understand the condition better and develop potential treatments and cures. Currently, the treatment of MS mostly involves managing the symptoms, and may vary according to the severity and progression of the disease and factors such as general health, age, and preferences of the patient. 

The new study was carried out by US-based researchers, and is published in Therapeutic Advances in Neurological Disorders. The researchers used real-world data from the U.S. Food and Drug Administration’s Adverse Event Reporting System database.

The researchers found that medicines that included semaglutide, and similar ingredients from the GLP-1 receptor agonists group, reduced the risk of developing MS by as much as 76 per cent. The medicines are designed to lower blood sugar levels. However, no link was found with other types of weight loss drug included in the study. 

The researchers said: ‘Drug repurposing, defined as researching new indications for already approved drugs, is gaining attention as a rapid and cost-efficient strategy for developing new treatments.’

The authors added: “Overall, this study hints at the possibility of considering anti-diabetic drugs with weight loss-inducing effects, especially GLP-1 receptor agonists, for potential repurposing opportunities in MS. These findings should be validated through complementary methodologies and prospective studies.”

The connection between obesity and MS has been previously studied, although researchers have been unable to pinpoint an exact link. It is thought that the increased inflammation levels in the bodies of obese people may make them more susceptible to MS. 

Meanwhile, another study has found that people who were obese in childhood are twice as likely to be diagnosed with MS. The Independent reports that the study was carried out by  academics from the Karolinska Institutet in Stockholm, and referred to data from the Swedish Childhood Obesity Treatment Register, which is known as Boris.

The researchers applied statistical analysis methods to data on 21,000 children diagnosed with obesity between 1995 and 2020, with an age range of two to 19. They compared the data with 100,000 with no obesity, and tracked each child for an average of six years. The results showed that the obese children were twice as likely to be diagnosed with MS. 

The average age for the diagnosis was 23 years old, described as early-onset MS. 

Study authors, associate professor Emilia Hagman and professor Claude Marcus, told the PA news agency: “One of the effects of obesity in childhood is that it causes a low-grade, but chronic, inflammation, and most probably this inflammation increases the risk to develop several diseases such as MS.

“It is also believed that chronic low-grade inflammation increases the risk for other such diseases are asthma, arthritis, type 1 diabetes, and some forms of cancers. However, we know that weight loss reduces the inflammation and most likely the risk to develop such diseases.”

Commenting on the study, Dr Clare Walton, head of research at the MS Society, said: “We don’t know for sure what causes MS, but research suggests it’s likely triggered by a mix of genetic and environmental factors, such as some viral infections and lower levels of vitamin D.”

However, it’s important to note that the exact causes of MS are not fully understood, and in many cases it may not be connected to weight or other lifestyle factors. 

If you are interested in finding out more about multiple sclerosis treatment or Gamma Knife surgery in the UK, please contact Mr Jonathan Hyam of Amethyst Radiotherapy.

MS Awareness Week: How To Talk About ‘Embarrassing’ Symptoms

Multiple Sclerosis (MS) Awareness Week is on 22-28 April this year, and charities and other health organisations are coming together to help improve the lives of people affected by this distressing condition. This year, the focus will be on the symptoms of MS that can be difficult to talk about.  

MS is a neurological condition that causes damage to the central nervous system. The MS Trust explains that the term ‘sclerosis’ means scarring, which in the case of MS means damage caused to the nerves in the brain and the spinal cord. The term ‘multiple’ refers to the fact that the damage can occur in more than one place.

The damage occurs when the immune system mistakenly attacks the covering that protects the nerves, which is called myelin. The body can repair the damage up to a point, but eventually the myelin wears thinner or may be eroded completely. This makes it more difficult for messages to travel between the body and the brain.

Sometimes, the messages are able to reroute themselves, but over time the condition can get progressively worse and the messages are not able to travel quickly or at all, resulting in a range of symptoms. These are wide ranging, because MS affects everyone differently. The symptoms can also vary in intensity from day to day.

Some of the most common symptoms include tiredness and fatigue, skin sensations such as numbness or tingling, memory and cognition problems, eyesight problems, and walking difficulties such as weakness or heaviness in the legs, and frequent stumbling or tripping. 

MS can also cause problems with the bladder and bowel, and sexual difficulties. These are obviously very personal issues that many people are reluctant to discuss with a health professional. This year MS charities and other related parties are working together to help break down the stigma and make it easier for people to discuss their problems.

MS can cause people to need to urinate more frequently and urgently, and have more difficulty in emptying their bladder, or episodes of incontinence. This can obviously restrict the quality and enjoyment of life for the person with MS, leading them to avoid everyday activities such as exercising and socialising. 

It’s important to be aware that these symptoms can be caused by other factors, such as an enlarged prostate in men; pregnancy, childbirth, or fibroids in women; urinary tract infections;  abdominal surgery; and excessive consumption of caffeine or alcohol. However, they should always be discussed with a health professional.

Sometimes, the problems can be eased or resolved by a few lifestyle changes. These include monitoring fluid intake and trips to the bathroom to understand how this might affect the bladder; staying properly hydrated; and avoiding substances that irritate the bladder such as caffeine, alcohol, spicy foods, and fizzy drinks. 

Strengthening the pelvic floor with some exercises can also be beneficial, and it also helps to maintain a healthy weight and avoid smoking. Bladder problems may also be treated with medication, botox injections, or a catheter. 

MS can also cause bowel problems such as constipation, incontinence or diarrhoea. All of these symptoms may occur in one person, and the problems may fluctuate over time. If you also notice blood in your stools, you should see a GP immediately, as this may be a sign of bowel cancer. 

It may be difficult or feel embarrassing to bring up this topic with a health professional, but they will be used to dealing with these symptoms and will be able to suggest a range of treatments. These might include changing your diet to include more fibre and fluids; taking regular exercise, and adopting the correct posture while on the toilet.

Bowel problems can also be treated with medications, enemas, pelvic floor exercises, or surgery. 

Sexual difficulties are commonly experienced by a range of people, and it is estimated that they affect about 50-90 per cent of all men with MS, and about half of all women. These figures may not be accurate because many people find that the topic is awkward or difficult to discuss with a healthcare professional.

MS may cause difficulties either directly, through erectile dysfunction in men or lack of arousal in women; or indirectly through a lack of stamina, incontinence, or emotional problems such as lower self esteem or feeling less attractive. 

There is support available, which may include talking therapies or medication to treat related conditions such as incontinence. 

If you would like some more information about the treatment of multiple sclerosis and nerves damage, please contact Mr Jonathan Hyam of Amethyst Radiotherapy. Further information is available about Gamma Knife surgery.

How To Maintain Your Dignity During Radiotherapy Courses

Undertaking radiotherapy is a major step in treating cancer, whether it is aimed at potentially curing you completely or at least enabling you to live an extended life span.

By the time you start treatment, you will be familiar with the process that will take place, as your oncologist and other specialists at the radiotherapy centre will have explained to you not just what the use of radiation to attack cancerous cells and tumours aims to do – by preventing them from growing and reproducing – but also how the procedure works.

This will include aspects like how long it takes, what it is like being inside a chamber, how you will prepare and what to expect afterwards.

Why There Is More To Radiotherapy Than Radiation

In a wider context, the actual treatment, while of central importance, is brief and therefore only makes up a small part of the experience of going through radiotherapy.

That is partly because your treatment may combine radiotherapy with chemotherapy or surgery, with the latter often involving radiation being used to shrink a tumour before it is excised by a surgeon.

What the process also involves is a range of ways in which the process can be very gruelling. Firstly, there is the physical element, with a wide range of side-effects being experienced by those having radiotherapy, both in the short and long term.

These can include tiredness and fatigue, nausea, upset stomach and loose bowel movements, hair loss, skin soreness, loss of libido and sometimes (especially with pelvic radiotherapy) sex problems in the short term.

Longer-term effects, of particular concern for those with good prospects for survival, can include reduced fertility, which may have wider implications if you survive but want to have children thereafter. This may leave you with major decisions such as whether to freeze eggs or sperm, stay childless or consider adoption.

How To Fight Your Mental Battle

This last aspect highlights another key issue all cancer patients face; while you face the prospect of battling a potentially deadly disease, you will have to deal with all sorts of wider concerns, quite apart from being confronted with your own sense of mortality – something that happens even if the prospect of a full recovery is very strong.

Emotional and mental strains are a part of the battle, ranging from longer-term implications for survivors to the psychological impact on your family and, perhaps, on your own mental health, especially if this has already not been in a good state before your diagnosis.

There are various ways you can get help, from cancer charities and support groups, as well as getting to know fellow patients who may be undergoing similar treatment to yours.

Consider How Much You Want Others To Know

At the same time, while these may be useful people to open up to and share knowledge and experiences with, there will be other instances where the reverse is true.

Firstly, not everyone needs to know you have cancer or are undergoing radiotherapy unless you want them to. If you are facing the prospect of treatment starting soon, you may want to think carefully about what you share and with whom, be it in person, by phone, or on social media where a wider audience may see what is happening.

It is worth bearing in mind that some people can be quite intrusive, whether innocently or otherwise, in wanting constant updates when you may not be able to provide these. At times you may feel very ill from side effects when getting treatment and not want to be doing this.

A couple of somewhat exceptional cases of the conflict between interest and privacy arose recently in the UK when first King Charles III and then the Princess of Wales underwent surgery before each later revealed they had cancer.

The King announced this swiftly, having already been open about his treatment on a non-cancerous prostate issue, but the princess maintained her privacy over an abdominal operation for an undisclosed issue until responding to some wild speculation – further fuelled by revelations of family photos being photoshopped – by announcing she had cancer.

Even so, neither royal has disclosed exactly what kind of cancers they are being treated for.

In the case of famous individuals, whose every move gains media attention, keeping everything quiet proved impossible. Indeed, the fact-checkers have now been tackling reports repeated across several media outlets that King Charles has pancreatic cancer and has been given two years to live – all based on ‘sources’ that are impossible to verify.

For most people, this kind of attention will not be forthcoming, but there could still be rather more of it than you are comfortable with, which is why you should stick to your guns and maintain your privacy over the nature of your diagnosis and treatment, unless you are keen for people to know.

Avoid The Wrong Advice

Your dignity and privacy have another element to it as well. In addition to the fact you may need people to give you lots of time and space while you concentrate on your treatment, you don’t want to find yourself listening to too much advice from well-meaning people whose medical knowledge may be somewhat limited.

For example, there may be people who wrongly advise you to use aloe vera if you get sore skin after radiation treatment. But this is not only ineffective but, some studies suggest, may actually make things worse.

There are also foods you should avoid while being treated with radiotherapy, such as shellfish or salty foods, as these can harbour viruses and increase your blood pressure at a time when you need this least and your immune system is weaker. You must be cautious about other people offering to treat you.

What all this shows is that there are plenty of steps you can take to help yourself deal with the physical and emotional impact of having regular radiotherapy sessions.

The Priority Is You

Ultimately, what must happen is that your needs come first. You are the patient and even if you are used to making sacrifices and compromises for those around you, this is when things change. It is time for others to support you in your time of need.

The good news is that however family, friends and employers may act, you can count on the professionalism of some of the best people when you come to the radiotherapy centre for treatment.

Hormone Injection Linked To Increased Brain Tumour Risk

A new study published in the British Medical Journal (BMJ) has identified a link between an injectable hormone and a heightened risk of brain tumours. The research was carried out in France, and included a team from the French National Agency for Medicines and Health Products Safety.

The study found that women who were using certain progesterone medications as contraception, or to manage gynaecological conditions such as endometriosis and polycystic ovary syndrome, were at increased risk of developing meningioma, a type of brain tumour. 

According to ITV News, there are around 10,000 NHS prescriptions for the medication, known as medroxyprogesterone acetate, every month in England. The new research has identified a further eight forms of progesterone that are used by millions of women worldwide as being a potential brain tumour risk. However, the risk is described as ‘very small.’

Previous research has shown that a high dosage of progesterone has been linked to a greater risk of meningioma. Reassuringly, the authors of the study said the association did not apply to the most commonly used progesterones in the UK. It may be applicable to some injectable forms, also known as Depo-Provera, which is used as contraception.

Paul Pharoah, professor of cancer epidemiology at Cedars-Sinai Medical Centre in the US, said: “The authors note that causality cannot be determined in an observational study such as this but, given what we know about the risk factors for meningioma, it seems quite likely that the association reported for medroxyprogesterone acetate is causal.”

He added: “It is important to note that progestogens are an important component of many types of birth control pill (oral contraceptives) and hormone replacement therapy but there are many different types of progestogens and no association with meningioma was found for the types of progestogens commonly used in the United Kingdom.”

“This means that women taking the commonly used birth control pills or hormone replacement therapy are not at increased risk of meningioma. It is important that women do not stop using their birth control pills without consulting their doctor.”

Meningiomas are a type of brain tumour that develop in the membranes that cover the brain, and are usually slow-growing and benign (non-cancerous). According to The Brain Tumour Charity, about 27 per cent of all brain tumours diagnosed are meningiomas, and they are more common in women than in men.

Although meningiomas are non-cancerous, they can compress the brain tissue, which causes a range of troublesome symptoms. These might include headaches; changes in vision; memory loss or difficulty in planning ahead or processing new information; loss of smell; seizures; and weakness in the limbs.

Research is ongoing into the risk factors for meningiomas, but the link with female hormones has previously been noted. Occasionally, they can grow faster during pregnancy. There is also an increased risk for women who are overweight or obese, which is thought to be because fatty tissue stimulates the production of female hormones. 

 The treatment of meningiomas will depend on the grade, which is on a scale of one to four. The majority of meningiomas are grades one and two, and there are no cancerous grade four meningioma tumours. The treatment will also depend on the size and location of the tumour, and the age and general health of the patient.

Grade one tumours may be actively monitored, while grade two and three tumours may be treated with a combination of surgery and radiotherapy. 

Dr Karen Noble, director of research, policy and innovation at Brain Tumour Research, said: “Any increased understanding of the risk factors of brain tumours is beneficial to the brain tumour community; it may open doors to research on preventative measures, as well as increase our understanding of why these tumours arise in the first place.”

“However, the public needs to be cautious when digesting the results from a study such as this before taking action. Although this study has linked certain progestogen treatments to an increased risk of meningioma, it has also demonstrated the safety of other progestogen treatments which were shown to not increase risk.”

Dr Noble emphasised that women should always speak to their doctor before stopping any medication.

For more information about the treatment of meningioma, please contact Mr Patrick Grover of Amethyst Radiotherapy.

Manifesto To Improve Health Outcomes For People With MS

The MS Society has launched a manifesto in parliament to address the challenges faced by people living with multiple sclerosis (MS). Campaigners are calling on the next UK government to take action to improve the standard of care for people with MS, and to give them better support for the financial and medical challenges that they face.

The manifesto draws attention to the fact that there are currently almost a quarter of a million people on the neurology waiting list. This is compounded by shortages of appropriately trained and qualified medical staff. 

The manifesto calls for a UK-wide neurological taskforce backed up by adequate investment and support so that people with MS can access the right treatments at the right time, helping to improve their quality of life. It also calls for better mental health support for those living with MS to help them cope with the distress and uncertainty they are facing.

Previous calls to reform the benefit system are also reinforced, as presently it can be complex to navigate and some people with MS may be denied fair access. It can also be difficult for people with MS to transition into employment, even if they are fit to do so, because of benefit rules and discrimination by employers.

This can leave people facing stressful financial difficulties at a time when they may have to find extra money for prescriptions and non-NHS services, such as physiotherapy or adaptations to their home or vehicle. 

Furthermore, the adult social care system that many people rely on for support with the activities of daily living is severely affected by staff shortages and underfunding. This can leave people living with MS in their own homes without the basic care that they need to survive. Campaigners are calling for decisive action and reforms to the system.

MS is an autoimmune disease that occurs when the body’s immune system mistakenly attacks the protective coating of the nerve fibres in the spinal cord, interfering with communication between the brain and the rest of the body. Over time, this can cause permanent damage to the nerves.

There are several types of MS. The most common types are relapsing remitting MS (RRMS), and primary progressive MS (PPMS). RRMS is characterised by flare ups of symptoms followed by a period of recovery, and PPMS is a steadily worsening progression of the condition.

Symptoms vary over time and between individuals. The most common symptoms include difficulty mobilising, fatigue, dizziness, tremor, and numbness or weakness of the limbs.  There is cross-party support for the new manifesto, and MPs from several parties attended the launch in the House of Lords. 

Chair of the APPG for MS, Charlotte Nichols MP, said: “The MS Society’s manifesto is full of ideas to address the many challenges facing people living with MS. I was delighted to welcome the MS Society to speak about these issues at the AGM of the APPG for MS this week.”

She added: “Hearing Phoebe share her experience of living with MS was a powerful testimony of why it’s so important to deliver change for people affected bv MS. The MS Society’s manifesto offers insight to MPs and prospective candidates about the policies we can advocate for in parliament to transform the lives of people living with MS.”

“It is a real privilege to work on an issue close to my heart and bring other parliamentarians together to do the same. I was delighted to be re-elected as Chair of the APPG for MS and I look forward to continue championing the issue in parliament.”

Head of Campaigns and Public Affairs, Charlotte Gill, said: MPs now, and in any future parliament, have the opportunity to play a crucial role in transforming the way people with MS are supported to live full lives.”

“We urgently need effective diagnosis and treatment pathways, timely access to life-changing therapies, and well-resourced health and social care to stay well.”

“We also need the financial security that comes with being supported to stay in work that fits our skills and experience for as long as we can. As well as a welfare system that recognises the unique challenges people with MS face and that is set up to support them.”

The manifesto is launched ahead of the anticipated General Election, and also MS Awareness Week from 22-28 April. 

For further information about multiple sclerosis and nerves damage treatment or Gamma Knife surgery, please contact Mr Jonathan Hyam of Amethyst Radiotherapy.

How Can Brain Tumours Affect Personality And Behaviour?

Unfortunately, personality and behaviour changes are a common symptom of brain tumours. This is caused by the tumour pressing on the surrounding brain cells, and the exact nature of the changes can depend on the size and location of the tumour.

According to the Brain Tumour Charity, personality changes are most likely to occur when the tumour is located in the frontal lobe of the brain, because this contains the areas that regulate our emotions and behaviour. Pituitary gland tumours can cause changes in hormone levels that may also affect behaviour.

The shock and stress of being diagnosed with a brain tumour can also understandably lead to behavioural changes that are out of character for the person, such as depression, lack of motivation, irritability, and anxiety. Sometimes, changes may occur as a result of the treatment for a brain tumour, such as medication or radiotherapy. 

Common symptoms experienced by brain tumour patients include confusion and brain fog, loss of inhibitions or behaving in socially unacceptable ways, low mood and apathy, mood swings, difficulty in planning and organising, and difficulty in recognising emotions in oneself and others. Sometimes, a person may become aggressive or even violent. 

Brainstrust reports that there has been some new research into the correlation between radiation exposure and social cognition in brain tumour patients. The study was carried out by a group of researchers at the University of Rochester Medical Center, New York. 

They noted that difficulty in social cognition occurs in up to 83 per cent of patients with brain tumours, but this is an area that has so far not been well studied. Social cognition refers to the process of navigating social interactions, such as interpreting emotions and social cues. 

The research demonstrated that the radiation dose to the amygdala (the part of the brain that processes emotion and memory) was associated with a worse performance on an emotion recognition task. 

The higher the radiation dose, the longer the response time to tasks such as recognising the emotional states on faces expressing six basic emotions including anger, disgust, fear, happiness, sadness, and surprise. The study involved 51 patients with low-grade and benign brain tumours who were receiving radiotherapy. 

The researchers note that up to 91 per cent of people with brain tumours experience some form of cognitive impairment, and even mild cognitive dysfunction can lead to a worse quality of life. They also note that cancer-directed therapies, including radiotherapies, can cause further cognitive disruption. 

There has been extensive research into understanding and preventing radiation-related cognitive decline, but so far social cognition, which is important for the maintenance of social relationships, has not been widely studied. 

The researchers concluded that using radiation techniques that minimise exposure the amygdala could be helpful in reducing adverse impacts on their social cognition. 

There are various forms of radiotherapy. One of the most advanced techniques is Gamma Knife stereotactic radiosurgery. This involves directing gamma radiation beams through the skull to focus precisely on the tumour, and leave the surrounding healthy brain tissue intact.

The direction of the beams can be computer-controlled for the most accurate focus, and several beams are directed at once from multiple angles. 

Each individual beam is very weak, minimising any damage to the brian, but the cumulative effect of the multiple beams on the target results in an effective radiation dosage. Usually, the procedure does not need to be repeated, unlike some other forms of radiotherapy, and risks of long-term side effects are considered to be very low.

Addressing personality and behaviour changes caused by brain tumours depends on what is causing them. Everyone responds differently to triggers and treatments, so there is no one-size-fits-all solution. Some people find that counselling or talking over the situation with trusted friends or family members can be helpful. 

Some people may require medication such as antidepressants or tranquilisers, but this option should always be discussed with the medical team first. Some patients may be referred for a neuropsychological assessment to find out what might be causing the distressing changes.

Self-help techniques, such as taking gentle exercise, eating a healthy and well balanced diet, and making time to rest can make a difference. 

If you would like some further information about brain cancer treatment and Gamma Knife surgery, please contact Mr Neil Kitchen of Amethyst Radiotherapy.

How Is Brain Tumour Awareness Month Being Marked In The UK?

March is Brain Tumour Awareness Month, and 2024 is the 15th anniversary of this annual event. The charity Brain Tumour Research (BTR) is running a programme of activities that are designed to raise awareness and funding for this devastating health condition. Here’s a roundup of events and how you can get involved. 

Wear a Hat Day, 28 March 2024

Thursday 28 March is the official Wear a Hat Day, although you can take part in the event at any time in March. The idea is to bring together friends, family and colleagues for a fundraising event with a hat theme, or to take part in a hattastic challenge, such as running a 5k or even a marathon while wearing your favourite hat. 

However, there is no need to complete a gruelling athletic feat to take part in Wear a Hat Day. You can simply put on your favourite headgear and make a donation to a brain tumour research centre. 

Since the idea was introduced back in 2010 by BTR, Wear a Hat Day events have raised over £2 million. This has been used to fund vital research into brain tumours, which kill more people under 40 than any other cancer. Despite this, just over one per cent of the national cancer research funding is currently spent on brain cancer.

Fundraising events around the UK

If you are interested in running to raise money for brain tumour research, there are dozens of opportunities to take part in marathons, half marathons, 10ks, 5ks, tough mudders, triathlons, and much more, with full listings available on the BTR website. 

There’s even a chance to take part in the 37th annual World Bog Snorkelling Championships! If you think you have what it takes to suit up in a mask and pair of flippers and swim the Waen Rhydd peatbog in Llanwrtyd Wells in Powys, mid Wales, then why not give it a go. 

If you are of a less adventurous disposition, there’s still plenty of ways you can get involved, by simply making a donation or a regular gift, or even leaving a legacy to the cause. You can also get involved with BTR’s campaign to raise the profile of brain tumours and influence the government to invest more in research. 

According to BTR, The prevalence of diagnoses and deaths from brain tumours continues to rise, and just 12 per cent of brain tumour patients survive beyond five years of diagnosis. Around 16,000 people are diagnosed with a brain tumour each year in the UK.

Brain tumour patients face considerable disruption to their daily lives, and for many it means giving up careers, hobbies, and surrendering their driving licence. The treatment and follow-up monitoring will usually require multiple lengthy hospital visits, often to specialist centres that are some distance from the patient’s home.

This can have a huge emotional and financial impact on patients, who are estimated to lose income worth £11,000 per year, and incur additional costs of almost £4,000. This is compared to an average of £6,840 per year for other cancer patients. 

What are the symptoms of brain tumours?

The symptoms of brain tumours vary depending on the size, type, and location of the tumour. Some of the most common symptoms include frequent or severe headaches that may be worse first thing in the morning; nausea or vomiting; new onset seizures; weakness or numbness; confusion; memory loss and speech difficulties. 

How are brain tumours treated?

The treatment of a brain tumour will depend on the type, whether it is high-grade (cancerous) or low-grade (non-cancerous). It may also depend on the location of the tumour in the brain, and the age and general health of the patient. 

The most common treatments include surgery, radiosurgery, and chemotherapy. There is a more specialised type of radiosurgery that is known as stereotactic radiotherapy, or sometimes also Gamma Knife Surgery. 

It is not surgery in the traditional sense, but involves delivering highly focused and concentrated gamma rays to the tumour from an external machine. This type of treatment usually requires fewer sessions, and the precise targeting helps the surrounding healthy tissue to remain intact. 

For more information about brain tumour treatment, please contact Mr Andrew McAvoy of Amethyst Radiotherapy.

Government Launches Children & Young People Cancer Taskforce

The Department of Health and Social Care has launched a new taskforce to bring together experts to develop new ways to detect, diagnose and treat cancers in children and young people. The initiative aims to save lives and mitigate the long-term effects of a cancer diagnosis for young people.

The announcement follows a two-year campaign by the Children’s Cancer and Leukaemia   Group and Young Lives vs Cancer, who have been calling for a dedicated plan to improve outcomes for young people with cancer. The two charities will be involved in the taskforce, along with Cancer Research UK and the Teenage Cancer Trust.

The taskforce will request better access to DNA testing and treatment, and more investment in research. It will also seek to explore how artificial intelligence can make the process of cancer diagnosis and treatment for young people more efficient and effective, and expand data sharing arrangements to help clinicians make better informed decisions.

The taskforce will be chaired by Dame Caroline Dineage MP. Health and Social Care Secretary, Victoria Atkins, said: “Discovering your child has cancer is among the worst news a parent can receive. Thanks to the remarkable progress in treatment and research, survival rates are higher than ever. However, even then, life-changing consequences can remain.”

She added: “This taskforce will help bring together world-leading experts and those who have dedicated their lives to fighting cancer to discuss how we can go further faster and to drive progress in cancer care for children and young people.”

“I am pleased we have such a respected figure as Dame Caroline leading the discussions and we look forward to working with all those on the taskforce to make child cancer care faster, simpler and fairer for all.”

Cancer is the leading cause of death in children up to 14 years old, and a major cause of death in young people in the UK. According to the Brain Tumour Charity, brain cancer is the biggest cancer killer of children and adults under 40 in the UK. However, less that 3% of the total annual cancer research funding is spent on brain tumours.

Brain tumours reduce life expectancy by an average of 27 years, and only 12% of adults survive for five years after a diagnosis. There are on average 500 young people under the age of 19 diagnosed with a brain tumour in the UK every year. Around half of these cases are gliomas, meaning that they originate from the glial cells.

Gliomas have various subgroups. Astrocytoma is the subgroup that makes up about 43% of all brain and spinal cord tumours in children. Other types of brain tumour that most commonly affect children are ependymomas, embryonal tumours, and craniopharyngioma. It is not yet understood what causes these childhood tumours.

Commenting on the launch of the cancer taskforce, Chief Executive at Young Lives vs Cancer, Rachel Kirby-Rider, said: “It’s a positive step that children and young people with cancer’s unique needs are getting the focus they deserve with the setup of a dedicated Children and Young People Cancer Taskforce.”

She added: “Alongside their health, cancer can completely disrupt a young person’s life both during and beyond treatment, from education, to mental health and finances. It’s reassuring that as well as improving treatment and research, the Children and Young People Cancer Taskforce aims to transform care and reduce the long-term impacts of cancer.”

Childhood brain tumours are usually treated with surgery, radiotherapy, or chemotherapy. The medical team will decide on the most appropriate course of treatment depending on the size, type, and location of the tumour and the age and general health of the child.

The long-term effects of a brain tumour on the child’s life will vary depending on the factors mentioned above and how it is treated. However, the consequences can be profound, including learning difficulties, vision problems, and impairments on normal growth, puberty, or physical abilities such as poor balance or weakness in a limb.

The child may also be left with emotional difficulties, either because of physical changes in the brain, or because of the trauma and social isolation they may experience due to the diagnosis and treatment of a brain tumour.

 

If you would like some more information about glioblastoma brain tumour treatment, please contact Mr George Samandouras of Amethyst Radiotherapy.