{"id":28786,"date":"2023-04-18T07:00:26","date_gmt":"2023-04-18T07:00:26","guid":{"rendered":"https:\/\/news.cancerresearchuk.org\/?p=25548"},"modified":"2024-11-03T15:12:48","modified_gmt":"2024-11-03T15:12:48","slug":"3-ways-were-helping-teenagers-and-young-adults-with-cancer","status":"publish","type":"post","link":"https:\/\/ogkologos.com\/en\/3-ways-were-helping-teenagers-and-young-adults-with-cancer\/","title":{"rendered":"3 ways we\u2019re helping teenagers and young adults with cancer"},"content":{"rendered":"
\"Lab<\/div>\n

\u201cCast your mind back to how you were when you were 18,\u201d says Caroline-May Huxley, who helps set our research strategy for children and young people. \u201cThink what it would have been like if you had to go through something like cancer. <\/span> <\/span><\/p>\n

\u201cEveryone can relate to that.\u201d<\/span> <\/span><\/p>\n

Relating is step one. For Teenage and Young Adult Cancer Awareness Month, we\u2019re focusing on the unique challenges young people face<\/span> before and after a cancer diagnosis. To solve them, we need to understand why they\u2019re so different. <\/span> <\/span><\/p>\n

But, of course, some people don\u2019t have to imagine what Huxley\u2019s talking about. People like Katie, one of the experts on our Cancer Research UK for Children & Young People Insights Panel, have had to live it. <\/span> <\/span><\/p>\n

Diagnosed at 18: Katie\u2019s story<\/span> <\/span><\/h2>\n
\"Katie,<\/p>\n

Katie is passionate about raising awareness of teenage and young adult cancers. She\u2019s running in her second Race for Life this year.<\/p>\n<\/div>\n

\u201cI went from being a normal 18-year-old to having chemotherapy, losing my hair, taking loads of other tablets and having scans all the time, to trying to transition back to the rest of my life,\u201d says Katie. \u201cI\u2019m going to be completely transparent. That was not easy.<\/span><\/p>\n

\u201cI wasn\u2019t aware of cancer symptoms, or the effects of chemo. I didn\u2019t even know what <\/span>Hodgkin lymphoma<\/span><\/a> was until I was diagnosed with it. I genuinely sat in the consultant\u2019s room and thought, \u2018It\u2019s not cancer: it\u2019s never going to happen to me \u2013 it\u2019s only within old people<\/span>.\u2019<\/span> <\/span><\/p>\n

\u201cThen I became quite closed off. <\/span> <\/span><\/p>\n

\u201cThe chemo made me very weak, very tired. I lost friends, which is sad to say, but a lot of people my age didn\u2019t understand.<\/span><\/p>\n

\u201cAnd, if I\u2019m honest, I blocked it all out for a long time, because I wanted to be a normal 18-year-old.\u201d<\/span> <\/span><\/p>\n

And being a normal 18-year-old takes enough energy and effort already. Even without cancer, teenagers and young adults are already experiencing some of the most momentous changes any of us will ever face. <\/span> <\/span><\/p>\n

Physically, their bodies and brains are reinventing themselves. Mentally and socially, it\u2019s no less dramatic: pulled this way and that, in school, relationships, work and university, they\u2019re defining who they are \u2013 finding their way in a confusing, changing world. <\/span> <\/span><\/p>\n

This article is about what we\u2019re doing to stop cancer getting in the way.<\/span> <\/span><\/p>\n

What\u2019s missing for teenagers and young adults with cancer<\/span> <\/span><\/h2>\n

We need to start by explaining the problem. Historically, cancer care and cancer research have been split into two distinct areas: childhood cancers and adult cancers. Teenagers and people in their early 20s don\u2019t fit neatly in either category.<\/span> <\/span><\/p>\n

\u201cIf you\u2019re 16 years old, and you\u2019re in a children\u2019s ward, with all these toys and animations, do you feel like you fit in?\u201d asks Huxley. \u201cIf you\u2019re 24, and you\u2019re on a ward with 60 to 70-year-olds, do you have peer support?\u201d<\/span> <\/span><\/p>\n

It\u2019s also harder for teenagers and young adults affected by cancer to take part in clinical trials, which are how researchers find new and better treatments. <\/span> <\/span><\/p>\n

Most trials are for older adults or younger children, meaning teenagers and young adults might not be eligible to join. Even if they are, it\u2019s unlikely they\u2019ll be given therapies or have treatment protocols that are tailored to their unique circumstances.<\/span> <\/span><\/p>\n

\u201cWhat you tend to get is a lot of toxicities, a lot of long-term side effects,\u201d explains Huxley.<\/span> <\/span><\/p>\n

Katie during treatment. <\/p>

” data-medium-file=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/Katie-during-treatment-300×300.jpg” data-large-file=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/Katie-during-treatment.jpg” decoding=”async” loading=”lazy” class=”wp-image-25575″ src=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/Katie-during-treatment-300×300.jpg” alt=”Katie during her treatment. She’s dressed in the colours of her favourite football team: West Ham. ” width=”250″ height=”250″ srcset=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/Katie-during-treatment.jpg 300w, https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/Katie-during-treatment-150×150.jpg 150w, https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/Katie-during-treatment-96×96.jpg 96w” sizes=”(max-width: 250px) 100vw, 250px”><\/p>

Katie, a big West Ham fan, was treated on a specialist unit for teenagers and young adults. That\u2019s not the case for everyone her age.<\/p>\n<\/div>\n

\u201cAnd there\u2019s a huge lack of data for teenagers and young adults. We don\u2019t have a lot of samples, which means that researchers can\u2019t examine the mechanisms underlying why they get cancer and why they get toxicities from treatment \u2013 all these sorts of things.\u201d<\/span> <\/span><\/p>\n

Those gaps in our knowledge can have profound consequences.<\/span><\/p>\n

Around 2,300 15 to 24-year-olds in the UK are diagnosed with cancer every year. Cancer incidence for the age group has increased by more than 20% since the early 1990s. <\/span><\/p>\n

And, every year, around 250 teenagers and young adults in the UK die from cancer \u2013 more than from any other disease. Even successful treatments can lead to long-term issues like infertility, loss of vision, and lung and heart damage. <\/span><\/span><\/span><\/p>\n

As long as we don\u2019t understand what makes these cancers unique, we\u2019ll struggle to improve how we treat them. <\/span><\/p>\n

What we\u2019re doing to make things better<\/span><\/h2>\n

For Teenage and Young Adult Cancer Awareness Month, we\u2019re coming together with other leaders in cancer research and cancer care to <\/span>make better, more tailored treatments possible. We want more young people to survive cancer, and we want to make sure they can move on from it with a good quality of life.<\/span><\/p>\n

April 2023 is the UK\u2019s first Teenage and Young Adult Cancer Awareness month.<\/p>

” data-medium-file=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/tyacam-launch-post-logo-square-300×300.png” data-large-file=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/tyacam-launch-post-logo-square-1024×1024.png” decoding=”async” loading=”lazy” class=”wp-image-25557″ src=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/tyacam-launch-post-logo-square-300×300.png” alt=”The Teenage and Young Adult Cancer Awareness Month logo on a pink background.. A green, yellow and orange ribbon, with a purple bubble next to it, where it says ‘Teenage and Young Adult Cancer Awareness Month’ in white text.” width=”250″ height=”250″ srcset=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/tyacam-launch-post-logo-square-300×300.png 300w, https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/tyacam-launch-post-logo-square-1024×1024.png 1024w, https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/tyacam-launch-post-logo-square-150×150.png 150w, https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/tyacam-launch-post-logo-square-768×768.png 768w, https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/tyacam-launch-post-logo-square-96×96.png 96w, https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/tyacam-launch-post-logo-square.png 1080w” sizes=”(max-width: 250px) 100vw, 250px”><\/p>

April 2023 is the UK\u2019s first Teenage and Young Adult Cancer Awareness month.<\/p>\n<\/div>\n

We\u2019ve been working up to this for a while. Since 2021, Huxley has been leading a project to understand how we can make clinical research more accessible \u2013 and more relevant \u2013 to teenagers and young adults with cancer<\/a>. As well as talking to researchers and funders, she\u2019s heard from dozens of young people and families affected by the disease. <\/span> <\/span><\/p>\n

\u201cThe TYA community \u2013 the patients and the parents \u2013 are so motivated and so passionate,\u201d she explains. \u201cThey were very, very generous with their time and their contribution to this. And there\u2019s so much altruism with young patients. They want to play their part. Even if it doesn\u2019t help them, they want to help young people in the future.\u201d<\/span><\/p>\n

Katie\u2019s a shining example of the passion, care and generosity Huxley is talking about. It\u2019s not just that she\u2019s a member of our Children and Young People Insights Panel: this month, she\u2019ll also be taking part in her second <\/span>Race for Life<\/span><\/a>. <\/span> <\/span><\/p>\n

\u201cI joined the insights panel when I\u2019d just started to accept what had happened to me, what I\u2019d been through,\u201d she says. It was part of the process of coming to terms with her cancer journey. <\/span> <\/span><\/p>\n

\u201cWhen I was going through chemo, I think the only thing I was focused on was getting through every session. I think I knew I was isolated. But I was so tired, I couldn\u2019t focus on it.<\/span> <\/span><\/p>\n

\u201cNow it\u2019s just so important for me to do these things to raise awareness. This isn\u2019t spoken about enough. And I think if more people knew, it wouldn\u2019t be so isolating.\u201d <\/span> <\/span><\/p>\n

Huxley agrees, but she knows that, as the UK\u2019s leading cancer charity \u2013 working across all ages and cancer types \u2013 we also have another role to play. People like Katie share their experiences and personal stories and with us<\/a> because they know that we can make a difference to the teenagers and young adults that will come after them. <\/span> <\/span><\/p>\n

\u201cThe question is, \u2018What are we actually going to do about it now? How are we going to hold ourselves accountable? How are we going to be responsible and play our role in this?\u201d<\/span> <\/span><\/p>\n

Here are some of our answers.<\/span><\/p>\n

1. The Experimental Cancer Trial Finder<\/h2>\n

The first challenge Huxley identified centred on making trials for teenagers and young adults with cancer easier to find. It\u2019s one that Katie\u2019s also been thinking about on the insights panel. <\/span> <\/span><\/p>\n

We believe every teenager and young person with cancer who\u2019s suitable for a trial should have an equal chance to take part in one. And the more people who join trials, the more we learn about how to make cancer treatments work better and cause fewer side effects.<\/span> <\/span><\/p>\n

Traditionally, though, doctors and nurses have had to read through dense lists of hundreds of studies to find one that might be suitable for their patients. Rarely do they include information for 15 to 24-year-olds, either.<\/span><\/p>\n

The Experimental Cancer (EC) Trial Finder is changing that. It\u2019s a free search tool that cancer specialists can use to match patients to clinical trials taking place across the UK\u2019s Experimental Cancer Medicine Centre (ECMC) network. Rather than splitting trials into children\u2019s and adults\u2019 categories, it makes it possible to search by age \u2013 as well as other important factors like location, cancer type and treatment method. <\/span> <\/span><\/p>\n

As well as making it easier for doctors to find suitable trials for their patients, the EC Trial Finder can also help trials targeting sm<\/span>aller patient groups \u2013 like teenagers and young people \u2013 recruit the people they need to move forward. <\/span> <\/span><\/p>\n

And, although the EC Trial Finder isn\u2019t available to the public, its monthly updates are shared with our Find a Trial team. They then translate the trial information into language that\u2019s easy to understand and upload it to our <\/span>Find a Trial database<\/span><\/a>, which is open for patients and their families to search.<\/span> <\/span><\/p>\n

2. The DETERMINE Trial<\/span><\/h2>\n

Finding a trial is one thing; making sure it\u2019s age-appropriate is another.<\/span> <\/span><\/p>\n

The second challenge highlighted by Huxley\u2019s interviewees was around making research more accessible and inclusive for teenagers and young adults. The <\/span>DETERMINE trial<\/span><\/a>, which we\u2019re running with the University of Manchester and the pharmaceutical companies Roche and Novartis, is modelling a way of doing just that.<\/span> <\/span><\/p>\n

DETERMINE is a trial for children, teenagers and adults with rare cancers. It will explore whether treatments approved for use in some cancer types can target matching genetic alterations in other, rarer ones. It\u2019s a way to provide new treatment options for those who might not have any others left.<\/span> <\/span><\/p>\n

DETERMINE is open across all the sites in our ECMC network, where this picture was taken. <\/p>

” data-medium-file=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/TYACAM-trial-300×300.jpg” data-large-file=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/TYACAM-trial.jpg” decoding=”async” loading=”lazy” class=”wp-image-25562″ src=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/TYACAM-trial-300×300.jpg” alt=”A scientist examining patient samples at an Experimental Cancer Medicine Centre.” width=”250″ height=”250″ srcset=”https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/TYACAM-trial.jpg 300w, https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/TYACAM-trial-150×150.jpg 150w, https:\/\/news.cancerresearchuk.org\/wp-content\/uploads\/2023\/04\/TYACAM-trial-96×96.jpg 96w” sizes=”(max-width: 250px) 100vw, 250px”><\/p>

A researcher examines samples at an ECMC. DETERMINE will be open at every site in the network.<\/p>\n<\/div>\n

The trial\u2019s unique design means that any drug that appears to be working could be fast-tracked for use as a routine treatment option on the NHS for patients with the same cancer type.<\/span> <\/span><\/p>\n

DETERMINE will also be open across the adult and paediatric ECMC network, with centres in all four UK nations. That helps to ensure that people can receive their treatment as close to home as possible.<\/span> <\/span><\/p>\n

\u201cThis is a real springboard for how pan-age trials can be delivered across the UK,\u201d says Huxley. \u201cIf we can get drugs approved through the accelerated process of the Cancer Drugs Fund, we\u2019ll have data from TYA patients taking part in the trial, so we\u2019ll be able to use them for teenagers and young adults more broadly.<\/span> <\/span><\/p>\n

\u201cA lot of our ECMCs are saying this is a great example. And it\u2019s not a one-off \u2013 it\u2019s something we can do more.\u201d<\/span><\/p>\n

3. The VIVO Biobank<\/h2>\n

We\u2019ve also teamed up with Blood Cancer UK to put together the <\/span>VIVO Biobank<\/span><\/a>, the UK\u2019s biggest resource for storing and studying samples of cancers in children and young people. <\/span> <\/span><\/p>\n

Cancers in teenagers and young adults aren\u2019t just different from cancers in other age groups, they\u2019re often very different from each other. Only a very limited number of people are affected by each cancer type at one time, which makes it hard for researchers to gather enough relevant samples to study them. Without a biobank, that is. <\/span> <\/span><\/p>\n

Biobanks are safe places to store samples and data from cancer patients. They can be much more, too. The VIVO Biobank \u201cunites researchers, medical professionals, patients, partners, donors, and charities \u2013 all with one goal in mind: to push the boundaries of research into childhood and youth cancers.\u201d<\/span> <\/span><\/p>\n

And, even before this new, bigger, biobank came together, banked samples had helped scientists develop new tests to diagnose cancers in children and young people, better methods for making treatment decisions based on cancer risk, and new ways to monitor how cancers are responding to treatment. <\/span> <\/span><\/p>\n

\u201cThis has all led to a better understanding of tumour biology, leading to the development of new treatments for children and young people\u2019s cancer,\u201d explained Professor Christina Halsey, Head of the School of Cancer Sciences at the University of Glasgow, when she <\/span>talked us through the scientific ins and outs of the VIVO Biobank last year<\/span><\/a>. <\/span><\/p>\n

There\u2019s plenty more improvements like that to come.<\/span> <\/span><\/p>\n

Keeping teenagers and young adults with cancer at the heart of our work<\/span> <\/span><\/h2>\n

This is the UK\u2019s first Teenage and Young Adult Cancer Awareness Month. The projects we\u2019ve listed above are early steps towards giving these cancers the unique, focused attention they deserve. Already, though, the direction they\u2019re heading is clear. <\/span> <\/span><\/p>\n

\u201cThis kind of work is how we deliver on our research strategy for children and young people,\u201d says Huxley. \u201cTeenagers and young adults are a group that can be overlooked and forgotten about, but we\u2019ve created a springboard, or a legacy in a way, for ho<\/span>w we think about them in what we do, and the impact we could have for them.\u201d<\/span> \"The<\/span><\/p>\n

And we have other guiding lights, too. Like Katie.<\/span> <\/span><\/p>\n

\u201cI signed up to raise awareness and to help others,\u201d she says. \u201cIf I can touch even two or three people with my story, it helps me to know I\u2019ve made a difference.\u201d<\/span> <\/span><\/p>\n

Tim<\/em><\/p>\n

\n

To find out more about our work<\/h3>\n<\/div>\n

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

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

\u201cCast your mind back to how you were when you were 18,\u201d says Caroline-May Huxley, who helps set our research strategy for children and young people. \u201cThink what it would have been like if you had to go through something like cancer. \u201cEveryone can relate to that.\u201d Relating is step one. For Teenage and Young […]<\/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-28786","post","type-post","status-publish","format-standard","hentry","category-world-news"],"_links":{"self":[{"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/posts\/28786","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=28786"}],"version-history":[{"count":1,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/posts\/28786\/revisions"}],"predecessor-version":[{"id":42987,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/posts\/28786\/revisions\/42987"}],"wp:attachment":[{"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/media?parent=28786"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/categories?post=28786"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/tags?post=28786"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}