Reflections of a (former) teenage cancer patient

When I was younger, of all the things I imagined for my future, having to ask a doctor at 17 if “having a tumour” meant I “had cancer” was not one of them.

But there was I was, sitting in an oncologist’s consultation room. My doctor had just told me that I had a “tumour” in my shoulder. That I would “need chemotherapy”. I remember asking if I was going to lose my hair from the chemo, long 00s-style sweeping fringe included. It felt surreal – I’d only just celebrated my 17th birthday a few weeks ago.

The realities of cancer as a young person

April is Teenage and Young Adult (TYA) Cancer Awareness Month, highlighting the specific experiences of young people affected by cancer. In the UK, around 2,300 young people (aged 15 to 24 years) are diagnosed with cancer each year.

As Senior Medical Editor and Inclusion Editor, I’m used to editing what others write – so writing is new territory for me. What is familiar is the feeling of being a TYA with cancer.

I was diagnosed with Ewing sarcoma (a type of bone cancer) in my shoulder blade. I’d had pain in my right arm for several months that just wouldn’t go away. But cancer wasn’t something I had thought was a possibility.

While mine is only one TYA experience with cancer, this month spotlights where unmet needs remain for this group of people – particularly beyond just the treatments they receive.

It can be a confusing time for them, with lots of new information, people and places to process. For me, this experience has gone on to shape how I think about communication, support and what ‘patient-centric’ care really means for young people.

MIND THE (paediatric to adult patient) GAP

1. You don’t know what you don’t know

Living with cancer as a teenage and young adult (TYA) person means your age can bring unique challenges and needs.

You’re even put into a distinct group – TYA – not quite paediatric, but also not yet adult.

It acknowledges your age can impact your diagnosis and treatment experience from the very beginning. From a possible lack of exposure to health information, to lower confidence in raising your worries with a doctor, age influences what you know (or don’t know) about the signs or symptoms of cancer and when to get them checked.

I was lucky that my mum used to be a nurse – she was my biggest advocate in seeking answers before I was diagnosed. Without her insight and insistence that I should get checked, I wouldn’t have been diagnosed when I was. Not every TYA person has someone in their support network with medical background, though.

2. The many shapes of TYA-(loved ones)-HCP conversations

But it’s not as easy as thinking “it’s only a TYA audience” when supporting them.

Their care often involves multiple dynamics beyond the common, two-way HCP-patient relationship. In my case, my care team had to navigate HCP-my parents, HCP-me, and me-my parents.

Add to this that TYA patients with cancer and their loved ones may process information differently, and HCPs may have to repeat the same thing in multiple ways, all in one appointment. I’ll always remember my oncologist drawing how and where I would be given radiotherapy, after his initial explanation (which my parents understood) wasn’t landing with me. The visual worked and has never left me – but this may not work for another young person. This flexibility in communication isn’t always built into how we design healthcare experiences – but it needs to be.

3. Looking beyond treatment

The idea of accessing support beyond treatment as a TYA can seem obvious while you still have check-ups, but what about after you’re discharged from your care team? And have possibly decades to live with the effects of cancer and its treatment?

‘Survivorship’ carries the weight of many complex care considerations – re-entering social spheres, late-effects management and mental health support, to name but a few. As the ‘in-between’ patient group, there’s a risk of falling between the gaps of care pathways. Education and access to resources can help teenagers and young adults to understand what’s “normal” post-discharge and who can support them.

Cancer’s impact doesn’t end because active treatment may have, and survivorship requires a distinct support network. Recognising and addressing this gap is essential if we want to support young people not just through treatment, but long after it ends.

Seeing the person behind the data

As an industry, we often say we’re ‘patient-centric’ but how do we practise this?

Every time I edit data-heavy medical materials, I try to never lose sight of the fact that there are people behind the data and messages. It’s difficult to forget this, as I was once one of those data points. From a nudge to use person-centred language to providing feedback on the ‘right’ patient imagery, I use my experiences to hopefully help those going through something similar.

One of the simplest ways to support young people is to listen to them – not assume we know their needs.

How would they like to be communicated with? What resources would help? Whatever the answer, TYA-friendly and appropriate education built with them can help them to understand, and feel a sense of control over, their own health.

I’m grateful and lucky to now be in my 30s and have been discharged from the care of a wonderful oncology team. But I – along with other TYA cancer survivors – will spend longer living with the effects of cancer and its treatment, than I did without them.

With each year since my last treatment, the worry lessens – but never entirely fades. Is that ache in my right shoulder “normal”? Am I “normal” tired? It’s taken time and support from my family, friends and care team for me to manage the worries. And with the right support, we can help other TYA patients to live well, beyond treatment.

Do you see the cancer? Or the person living with cancer? Talk to them, treat them like the person they are. Reach out and find out how we’re doing that at PX+CX.