Historically, we have tended to think of cancer in a binary way, labelling it as either ‘adult cancer’ or ‘childhood cancer’. But where does that leave teenage and young adult (TYA) patients? Here, we speak with two paediatric cancer experts at The Institute of Cancer Research, London, about the importance of acknowledging the TYA patient population and, where appropriate, directing them to paediatric services.
In the UK, people typically use paediatric healthcare services up to the age of about 16 before transitioning to adult care specialists. This ensures that children are seen by suitably trained staff and receive tailored treatments in an appropriately child-friendly environment.
This approach works well for conditions that have a significantly higher prevalence in one of these age groups. For instance, while young children are more likely than adults to present with croup or chickenpox, they are less likely to need to use clinics focused on Alzheimer’s disease or hypertension.
It is also effective for conditions with relatively consistent underlying biology, such as cystic fibrosis, strep throat and eczema. For these conditions, similar treatment approaches are often used for those of all ages.
However, the biological complexity of many cancer types limits the effectiveness of separating patients out in such a straightforward way.
Working to improve outcomes for TYA patients
Increasingly, scientists believe that people in the TYA age range – often defined in the UK as those aged 15–24 years – represent a special category. Many are also starting to advocate for adopting the USA’s broader definition and including adults up to the age of 39.
In some cancer types, TYA patients are subject to additional barriers in terms of diagnosis, referral and inclusion in clinical trials, all of which could be affecting their outcomes.
As a long-standing leader in the field of paediatric cancer research, The Institute of Cancer Research (ICR) aims to be a driving force for change in helping to ensure that TYA patients are given the attention they deserve and need.
We are internationally leading in the study of cancers in children, teenagers and young adults. Our researchers play key roles in international research efforts that are transforming how these devastating diseases are treated, as well as pioneering studies of cancer types not studied elsewhere in the UK.
Find out more about our childhood cancer research
This has been a key objective for Professor Chris Jones, Head of the Division of Cancer Biology and Group Leader of the Glioma Group at the ICR, for many years. He says:
“TYA patients can fall between paediatric and adult services, and so they may be missed by researchers focusing on one or other of these age groups. It is really important that we acknowledge the appropriate patient populations when we are working on ‘childhood cancers’.”
Professor Janet Shipley, Group Leader of the Sarcoma Molecular Pathology Group at the ICR, agrees:
“Various features make teens and young adults with cancer a unique set of patients. Characteristics specific to this age range – which range from biological challenges to psychosocial issues – do not resemble those of children or older adults. Fortunately, this is becoming increasingly well-recognised.”
“Due to his treatment, Robert missed out on his Duke of Edinburgh expedition. It's heartbreaking really because he was all ready to go, he had all his stuff booked up and he was very disappointed. Cancer doesn’t care who it picks – any age, anyone.”
- Amanda, whose son Rob Holland set up Rob’s ARTTT (A Rare Teenage Tumour Trust) before he died of desmoplastic small round cell tumour (DSRCT)
Challenges to overcome
As the biology of many tumour types may be different in TYA patients compared with adults and children, the most pressing concern for researchers is to build a better understanding of the age-specific molecular factors that affect how cancer spreads and responds to treatment.
In cancers that can occur at any age, a TYA patient may have either a ‘paediatric-type’ or an ‘adult-type’ of cancer. In these cases, specialist knowledge is needed to understand these nuances and direct the patient to the correct treatments. However, it is also possible that some cancer subtypes may be very specific to the TYA population and require new approaches.
An important way for researchers to build their understanding in this area is to make sure that clinical trial recruitment processes are driven by biology and not age.
“There’s a solid argument to be made,” says Professor Jones, “that if a patient has a ‘paediatric-type’ of cancer, they should be considered for clinical trials designed for that tumour, regardless of age – and vice versa for a child with an ‘adult-type’ tumour. There may also need to be wholly TYA trials that straddle both clinical services.”
“Daniel was vibrant, popular and full of life. He loved music, football and having fun with friends, and he planned to study International Business at university.”
- Brian and Alison Caplan, who set up the Doing It For Daniel Foundation after he died of diffuse midline glioma (DIPG) just seven months after his diagnosis
Fortunately, research is starting to move in this direction. Professor Shipley is the biology lead of a current international clinical trial in a type of cancer called rhabdomyosarcoma. Although this cancer mainly occurs in children and TYA, it can also affect adults, so the team has chosen to focus on the biology of the disease and recruit patients of all ages.
Taking this approach gives patients, including TYA patients, the best chance of benefiting from the treatment under investigation. It also provides researchers with more useful data that could inform standard-of-care treatments in clinics, as well as the development of new drugs.
There are also factors to consider in psychological and social care. Although a cancer diagnosis at any age is never seen as good news, it can be particularly devastating for TYA patients. Many people in this age range will be old enough to understand the potential impact on their future yet still see themselves as having so much life left to live.
“Ellie was heartbroken. She had a wonderful life ahead of her and it was being swept away.”
- Karen and Ian Mawdsley, who set up The Ellie Mawdsley Foundation in honour of their daughter. Ellie was studying for an accounting apprenticeship at the time of her diagnosis, and she got engaged shortly afterwards. Sadly, she became too unwell to marry her fiancé, Jack.
The effects of the disease and its treatment on a TYA patient’s career, relationships, reproductive capability, independence and social life can also be substantial.
Professor Shipley says: “We need to take a holistic approach that is tailored to the unique needs of this patient population. Both paediatric and adult oncologists should be involved as part of a comprehensive multi-disciplinary team that also includes psychologists, youth workers, fertility experts, physiotherapists and other specialists. We also need to ensure that we give these young patients a voice when it comes to setting out their care plan.”
“Megan was told she would never be able to have children and that she only had a 30 per cent chance of surviving more than five years. During the few months that she was in remission, she talked about doing a skydive to raise funds to help other young people dealing with cancer. She also wanted to organise a rave in the summer of 2021. These events both went ahead, despite Megan not being there.”
- Jane Kelly, who worked with her daughter’s closest friends to set up Megan’s Rose of Hope after Megan died from Ewing sarcoma
Proactive inclusion
For anyone with a cancer diagnosis, there is a risk of feeling isolated, particularly if none of their peers have had the same experience. Support groups – both in person and online – can often be helpful in making people feel less alone. However, TYA patients can also be unintentionally excluded from these.
There are numerous wonderful and much-needed childhood cancer charities offering support in the UK, but many of them are targeted at young children, providing colourful, toy-filled family rooms and organising ‘family fun’ days with a focus on child-friendly activities.
“Rudy was a handsome, strong young man and at 6’4” carried himself with poise. He had a very disciplined routine of training at the gym and was dedicated to his job.”
- Vidhu Menon, who set up the Rudy A Menon Foundation with her husband Somnath. They lost their son to gliomatosis cerebri on his 26th birthday, just weeks after he started noticing symptoms.
Several support groups have been set up around teenage patients, but people in their twenties and thirties are not often specifically catered for. Although these young patients can join adult support groups, they may struggle to find others who relate to their specific concerns. After all, more than half of the members may not have received a diagnosis until the age of 70 – a very different stage of life.
The families of TYA patients can also feel excluded – not only from support groups but also from campaigns and proposals around cancers labelled as ‘childhood’ diseases. And many of them are likely to be heavily involved in their child’s care. In England and Wales, only half of those aged 24 have moved out of the family home. Parents wanting to lift any burden they can from their children often find themselves contending with logistical and financial issues while also trying to navigate the emotional impact the disease has on them and other members of the family.
“Right from when he was a little boy, Talan would never sit still. He started with skateboarding, then went on to football, rugby, swimming – he even swam for the county – gymnastics, and when he was eight, he joined the local surf club. Before he became ill, Talan was just a normal teenager, looking forward to being 18.”
- Sarah Penny, who set up Talan’s Trust after her son died from rhabdomyosarcoma
A new research centre
The ICR is working hard to ensure that all patients, where appropriate, are given equal access to clinical trials, effective treatments and sufficient support, regardless of their age. We recently launched the Centre for Children and Young People’s Cancer (CCC) in collaboration with The Royal Marsden NHS Foundation Trust, which aims to provide a national hub for research into child and TYA cancers.
Professor Jones and Professor Shipley are both members of the new centre. Professor Jones said: “The CCC brings together the ICR’s well-established paediatric centres, allowing us to co-ordinate our activities and share our knowledge and technological resources more effectively. By aggregating and expanding our projects, we hope to accelerate the translation of scientific advances into real-life benefits for young people living with cancer.”
“Laura created a bucket list, and thanks to the wonderful generosity of strangers was able to tick off some unforgettable moments. Although her surgeon had initially told her it was impossible, Laura typically defied expectations and resumed her studies at university. We were so proud to see her graduate with a 2:1. Laura fought incredibly hard, but treatment only held the cancer back for so long, and the tumour regrew.”
- Mark and Nicola Nuttall, who launched the Be More Laura Foundation in honour of their daughter. Laura, who was diagnosed with glioblastoma multiforme during a routine eye test, donated her brain for research.
Professor Shipley said: “This collaboration should facilitate an increase in the number of clinical trials available to children and young people, which not only gives us a higher likelihood of developing new anticancer drugs but also may result in more TYA patients receiving treatment at an early stage when their cancer may be easier to eliminate.”
Studies focused on TYA patients
Our scientists are also focusing some of their research directly on the TYA population.
Professor Jones and members of his team led a recent study on high-grade gliomas in people aged 13–30 from across the globe. Their work showed that some of the molecular abnormalities in the TYA tumours overlapped with those in both the paediatric and adult age groups, confirming the importance of prioritising biology over age. What’s more, the researchers identified several biological markers that seem to be specific to TYA cases, some of which may be targetable with existing medications.
Prior to that, Professor Shipley and some of her colleagues published a paper that highlighted the specific challenges involved in diagnosing and treating rhabdomyosarcoma in TYA patients. Based on their findings, the authors called for a multifaceted approach to improving outcomes for this group, giving specific examples of changes that need to be made.
“Kelly, our wonderful, talented 17-yr-old-daughter, best friend and soulmate, endured 28 rounds of chemotherapy. Nevertheless, she continued with her studies and achieved 10 GCSE passes. We are so incredibly proud of her.”
- Linda and Martin Turner, who created the Kelly Turner Foundation in memory of their daughter, who died from DSRCT
Working with the families of TYA patients
The ICR benefits from strong relationships with family charity partners – charities often set up following the death of a child to cancer. The inspiring and determined individuals behind these organisations have turned their grief into a positive force for change, and they work hard to raise awareness of paediatric cancers while also fundraising to support research in this field.
“Parents should never outlive their children. Until it happens to you, your outlook on life is completely different. Sadly, Christopher’s outcome was dreadful for us. But we can't just sit back and do nothing. We want to make a difference.”
- Lynn and Lynn Lucas, who set up the Chris Lucas Trust after their son Chris – a sporty teenager who achieved great GCSE results – died from rhabdomyosarcoma
We are honoured to share the stories of these charities and the beloved children who inspired them, irrespective of whether the cancer diagnosis occurred at the age of two or 22. We would not be able to do the life-saving research we do without their help, and we are eternally thankful for their support and wisdom.
We are so grateful to work with such passionate family charity partners and receive their generous support.
Learn more about charity partners
Together, we can make a difference
The ICR is committed to improving outcomes for all children and young people, and our scientists have made huge strides in research and treatment to improve the chances of survival.
Our family charity partners play such an important part in driving transformation for TYA patients, and we owe it to them to do everything we can to work towards a future where no parent has to lose a young person to cancer.
“We must make sure that teenagers and young adults with cancer are not overlooked,” said Professor Shipley. “By treating this group as its own subset of patients, we stand to exponentially increase our understanding of the cancers that affect them and accelerate the development of new drugs that can extend and save their lives.”
Banner image credit: Harish Sharma, Pixabay