{"id":28349,"date":"2022-09-22T15:17:21","date_gmt":"2022-09-22T15:17:21","guid":{"rendered":"https:\/\/news.cancerresearchuk.org\/?p=24676"},"modified":"2024-11-03T15:13:15","modified_gmt":"2024-11-03T15:13:15","slug":"life-beyond-cancer-improving-the-long-term-side-effects-for-children-and-young-people-with-brain-cancer","status":"publish","type":"post","link":"https:\/\/ogkologos.com\/en\/life-beyond-cancer-improving-the-long-term-side-effects-for-children-and-young-people-with-brain-cancer\/","title":{"rendered":"Life beyond cancer: Improving the long term side effects for children and young people with brain cancer"},"content":{"rendered":"
\"A<\/div>\n

Today, more than 8 in 10 children and young people in the UK, aged 0 to 24, survive their cancer for 10 years or more. <\/span> <\/span><\/p>\n

Survival of children and young people has hugely increased over the last 50 years. In fact, progress we\u2019ve made in treating and diagnosing these cancers means that we have avoided almost 30,000 deaths from children\u2019s and young people\u2019s cancers since the 1970s<\/a>. <\/span><\/p>\n

While there have been enormous strides in survival, new challenges have emerged in treating children\u2019s cancers. <\/span> <\/span><\/p>\n

\u201cIt\u2019s really only recently, I suppose that you could say, that we\u2019ve had the luxury of worrying about this,\u201d explains Dr Debbie Hicks, a Newcastle University Research Fellow.<\/span> <\/span><\/p>\n

\u201cWe now have about 75-80% of all childhood cancer patients surviving their cancers. That\u2019s wonderful, of course. But we now have this large population of patients that we didn\u2019t before, and they <\/span> <\/span>have significant unmet needs.\u201d<\/span> <\/span><\/p>\n

Hicks is referring to what we call \u2018survivorship\u2019. The term encompasses what it means to live beyond cancer. For many, this involves living with the long-term side effects of cancer treatment. <\/span> <\/span><\/p>\n

We spoke to Hicks about her work in the field, and what is being done to understand and minimise the impact of long-term side effects. We also spoke to Charlie, who had a brain tumour as a child, about what improving survivorship means to him.<\/span><\/p>\n

What does survivorship mean?<\/span> <\/span><\/h2>\n

\u201cSurvivorship is a really broad topic, and encompasses lots of different things,\u201d explains Hicks. <\/span> <\/span><\/p>\n

\u201cThere are variations in the definition, and it survivorship encompasses living with, through, and beyond a cancer diagnosis. Many survivors are burdened by negative health consequences as a result of their cancer itself and the treatment they\u2019ve been given. But it\u2019s more than that. It\u2019s the overall quality of life, the emotional impact and the overall burden of having cancer as a child.\u201d<\/span> <\/span><\/p>\n

Hicks\u2019 research focuses specifically on medulloblastoma<\/a>, the most common malignant brain tumour in children and one that affects approximately 55 children each year in the UK. <\/span><\/p>\n

The side effects of medulloblastoma treatment that present later into a child\u2019s life, otherwise known as the \u2018late effect profile\u2019, can be hard to predict. <\/span> <\/span><\/p>\n

\u201cBut predominantly,\u201d explains Hicks, \u201cthe combination of brain surgery, <\/span> <\/span>cerebral spinal radiation (whole brain and spinal cord radiotherapy) and chemotherapy often given to medulloblastoma patients, often results in frequent problems that affects the quality of survival after medulloblastoma diagnosis.\u201d. <\/span> <\/span><\/p>\n

Cognitive effects, such as <\/span>problems with memory, thinking, attention, and learning difficulties<\/span> are common in<\/span> children who have been treated for medulloblastoma, but a whole host of other problems are seen too, including hormone dysfunction, <\/span> <\/span>heart problems and sensory impairments such as hearing loss. Medulloblastoma survivors are also at higher risk of second cancers. <\/span> <\/span><\/p>\n

Hicks is researching the link between medulloblastoma, its treatment and late-effect profile to understand its complexity and underpinnings, and to develop strategies for improved quality of life for survivors going forward. Her goal is to make sure that young people with medulloblastoma can grow up with minimal late effects.<\/span><\/p>\n

Charlie\u2019s story<\/span> <\/span><\/h2>\n

Charlie Williams, from Suffolk, was diagnosed with medulloblastoma when he was 5 years old. <\/span> <\/span><\/p>\n

To treat his cancer Charlie had an 11-hour operation, radiotherapy and a year of chemotherapy.<\/span> <\/span><\/p>\n

Now 23, Charlie tells us what it\u2019s like to live with some of the side effects of his treatment. <\/span><\/p>\n

\u201cWhen I was treated, the radiotherapy damaged my spinal cord and affected my hormones,\u201d he explains. \u201cMy parents are tall and I was always one of the tallest in the class when I was younger. When I had the radiotherapy, the doctors said that, without growth hormones, I would have stayed the same height as I was then. \u201c<\/span> <\/span><\/p>\n

He explains that his growth was one of the main side-effects at the time of his treatment. However further down the line, following his recovery, Charlie\u2019s hearing was impacted.<\/span><\/p>\n

Charlie was diagnosed with medulloblastoma when he was a child. <\/p>

” data-medium-file=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2022\/09\/Charlie-200×200-1.jpg” data-large-file=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2022\/09\/Charlie-200×200-1.jpg” class=” size-full wp-image-24680″ src=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2022\/09\/Charlie-200×200-1.jpg” alt=”A photograph of Charlie in front of the London Eye. ” width=”200″ height=”200″ srcset=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2022\/09\/Charlie-200×200-1.jpg 200w, https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2022\/09\/Charlie-200×200-1-150×150.jpg 150w, https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2022\/09\/Charlie-200×200-1-96×96.jpg 96w” sizes=”(max-width: 200px) 100vw, 200px”><\/p>

Charlie was diagnosed with medulloblastoma when he was 5 years old.<\/p>\n<\/div>\n

\u201cIt was after chemotherapy in about 2005-2006 when doctors found I had lost the highest decibel hearing in one ear. And then in 2008 I found I had lost it in the other,\u201d he says.<\/span><\/p>\n

Charlie wasn\u2019t happy wearing hearing aids at the time, but it\u2019s something he\u2019s adapted to over time. \u201cI just couldn\u2019t hear people if I didn\u2019t wear it. The hearing aids are a lot more discrete now as the technology has improved so much, so it\u2019s much less noticeable.\u201d <\/span> <\/span><\/p>\n

\u201cI do think the side-effects feel mild in comparison to what I faced.\u201d After his treatment, Charlie had to re-learn everyday tasks, such as walking and eating. <\/span> <\/span><\/p>\n

\u201cI do have a weakened immune system as a result of the treatment and I have scars, but I don\u2019t think most people who meet me would know that I was any different to any other 23-year-old now. <\/span> <\/span><\/p>\n

\u201cI have check-ups each year which have shown I have kept stable. I had those at the children\u2019s ward until I was 17 but now have them at Ipswich hospital. I always go with my mum, and I think that, even though you might look at us and think we are both calm, there are so many things going through our minds \u2013 you can\u2019t avoid the \u201cwhat if\u201d thoughts. <\/span> <\/span><\/p>\n

\u201cI know how hard the experience was for all my family, and I am now keen to support Cancer Research UK as this research is so important to helping develop new, kinder treatments for the future.\u201d<\/span><\/p>\n

Unpicking the long term side effects <\/span><\/h2>\n

Hicks\u2019 research is focussing on what is termed \u2018molecular survivorship\u2019. This area of work zooms in on the interaction between our own human biology and the cancer treatment and tumour itself. <\/span><\/p>\n

\u201cSo for example, when you radiate, you\u2019re not just a radiating the tumour itself, although we\u2019re getting better at being more precise, but there\u2019s some normal tissue that also receives radiation. And the specific genetic makeup of a patient can hugely influence how well it\u2019s tolerated in normal tissue.\u201d <\/span><\/p>\n

So as Hicks describes, her team is looking at how the molecular makeup of the individual who has the tumour, rather than the tumour itself, can influence someone\u2019s late effect profile. \u201cSo say we have two kids who receive the same treatment for medulloblastoma, but have a different quality of life afterwards.
\u201cMy interest is how do the genetics and molecular features of the host (patient) determine long term side-effects\u201d <\/span><\/p>\n

The team is exploring whether knowing in advance if someone is predisposed to more severe late effects could modify or reduce the intensity of the treatment needed. Equally, if the treatments couldn\u2019t be altered, how could the child be monitored to ensure the correct interventions could manage the side effects. <\/span><\/p>\n

Time to address this unmet need <\/span><\/h2>\n

There are a number of challenges when it comes to studying this area of survivorship. As the concept of survivorship, particularly for children\u2019s cancer, is quite new, there are a lack of historic samples to work with. <\/span><\/p>\n

We\u2019ve written before about the importance of samples<\/a> in understanding children\u2019s cancer, but this is quite a different problem.
<\/span><\/p>\n

\u201cThe resources that we have to work with are coming from old collections from patients,\u201d says Hicks. \u201cAs this was much less of an issue, the majority of samples are from the tumour itself, but we have very little genetic information about the person who the tumour belonged to.\u201d Fortunately, this is now changing, as the importance of also interrogating host biology is being recognised.
<\/span><\/p>\n

Despite the challenges, Hicks is determined to continue working in this area and feels close to the cause. \u201cChildhood cancer survivorship is a really nuanced place,\u201d she says. \u201cBecause, of course, kids <\/span>surviving<\/span> their cancer is extremely positive, and that\u2019s to be celebrated. But <\/span>we can now do better for these children, by developing kinder treatments and <\/span>bring<\/span>ing<\/span> cancer su<\/span>rvivorship into our sharp focus <\/span>for attention and action in the coming years<\/span>\u201d.<\/span><\/span><\/p>\n

\n

\"Debbie Hicks is a Fellow of Molecular Cancer Survivorship at Newcastle University. She graduated with Honours in Molecular Biology before carrying out a PhD in the molecular genetics of rare disease. Debbie\u2019s research involves elucidating the biological features important in the development and progression of medulloblastoma and deriving novel biomarker-driven risk-stratification models that work towards the application of kinder, precision, therapies.<\/span><\/p>\n

Her work aims to reduce the disease\/treatment-associated burden in medulloblastoma survivors by understanding the biological underpinnings of late effects, and advancing drug strategies for the amelioration of late effects in medulloblastoma survivors.<\/span><\/p>\n<\/div>\n

Lilly<\/em><\/p>\n

More on this topic<\/h3>\n<\/p>\n

Source<\/a><\/p>","protected":false},"excerpt":{"rendered":"

Today, more than 8 in 10 children and young people in the UK, aged 0 to 24, survive their cancer for 10 years or more. Survival of children and young people has hugely increased over the last 50 years. In fact, progress we\u2019ve made in treating and diagnosing these cancers means that we have avoided […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"footnotes":""},"categories":[5137],"tags":[],"class_list":["post-28349","post","type-post","status-publish","format-standard","hentry","category-world-news"],"_links":{"self":[{"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/posts\/28349","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/comments?post=28349"}],"version-history":[{"count":1,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/posts\/28349\/revisions"}],"predecessor-version":[{"id":43197,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/posts\/28349\/revisions\/43197"}],"wp:attachment":[{"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/media?parent=28349"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/categories?post=28349"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/tags?post=28349"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}