What it's like to be a teenage cancer survivor
BY Ellie Philpotts
3rd Oct 2023 Inspire
6 min read
Ellie Philpotts reflects on the experience of having cancer as a teenager, and the impact it has in later life
Recently, how the public and medics view the long-term effects of illness has shifted. Covid-19 was largely responsible, with Long Covid causing a cocktail of late effects demanding attention. Soon after people adapted to the concept of the novel virus itself, they were forced into some semblance of understanding the whole-body impact long after its initial peak.
But for young cancer survivors, long-term effects are nothing new. After all, they present themselves in numerous ways throughout the years.
I was made to realise this at 15, diagnosed with Hodgkin's Lymphoma. It's one of the commonest cancers in young people, but this is little consolation when you’re the only person you know with it. It comes with loneliness, and this sense of otherness doesn’t necessarily end, even in the survivorship club.
At the time, it was an immediate enrolment onto chemotherapy and steroids. I stayed there for six months whilst juggling GCSEs and planning for milestones like prom, and broader experiences like pondering where I might take my future.
"For young cancer survivors, long-term effects are nothing new"
Fortunately, I reached remission, and have kept sight of this in the 12 years since. Sadly, the privilege of survival isn’t afforded to everyone, despite improvements making diagnostic tools work sooner, and treatments kinder to growing bodies.
My current lifestyle was once a distant dream—graduating university, becoming a journalist, enjoying my twenties. But I’m still conscious of the divide between how society expects you to feel post-treatment, and what is often the case.
Diagnosis in the young adult bracket I share with 2,000 others each year in the UK poses unique challenges. Cancer is a largely adult group of diseases, and at this age, you’re already balancing on the tentative tightrope between childhood and adulthood before another force jolts it. This didn’t knock me off my feet entirely—but did alter my sense of identity.
The force came from within me, so there was no-one else to aim cliched teenage blame towards. Instead, you have to summon some acceptance, alongside your multitude of medicines. Not the easiest when you’re too young to have experienced the lessons that usually teach this.
When treatment’s unwelcome effects arrive, straightaway or decades on, you also have to accept that they had to happen to ultimately survive. But it can be frustrating that young survivors are expected to shoulder this burden. We’re not ungrateful at overcoming cancer, and often use our experiences to help others—but this is just another way its role remains.
Some survivors feel that even long into "recovery", it’s easy for cancer to make a comeback. That can be an actual relapse, or figurative, with worries creeping up. Last year, I developed symptoms reminiscent of lymphoma, and my mind taunted the idea of a reoccurrence. Fortunately, it was glandular fever, ironically a common teenage condition sometimes mistaken for lymphoma. While a tough summer ensued, I was relieved it wasn’t worse.
Cancer makes you health-conscious—awareness of what’s normal for you isn’t negative, but can come alongside anxieties that complicate things further. Survivors' guilt is one—and, like much of the experience, is multi-faceted. You appreciate your second shot at life, but wonder what made your body respond when so many others’ didn’t. Then come relationships, friendships, fertility and moving on—each with common stressors that adopt new meanings alongside serious illness.
The trauma of survival
As young woman in her twenties and a survivor of lymphoma for over five years, my fellow cancer survivors and I have encountered shared experiences. While each person's perspective on illness, ranging from diagnosis to treatment and emotional dimensions, may differ, we concur that the reach of cancer's effects extends well beyond its physical manifestations—from the initial symptoms to the visible side effects of treatment. The reality of psychological trauma persists long after treatment concludes. Yet, society, including some medical professionals, often assumes that a complete restoration is the norm.
"The reality of psychological trauma persists long after [cancer] treatment concludes"
We’ve also tried to mould our past into a platform to benefit others. Our experiences inspired our decisions around work and education.
Without being pushed into medical settings, I doubt I would have specialised in health journalism, nor avidly volunteered with charities. Jessica cites how her illness led her towards helping young people with their mental health, while Helen’s Psychosocial Community Work degree brings an academic angle to teenage cancer.
Jessica Beedle, 26, West Midlands
Being diagnosed with lymphoma at the cusp of becoming a teenager was confusing and alienating. In hindsight, I’m grateful my treatment was relatively low-intensity, my inpatient hospital stays short and my absences from school limited. However, at the time, life going forward seemed a scary, exhausting prospect. I nostalgically longed for my life before cancer, rather than considering whatever waited for me in a life after cancer. Though extremely thankful when I entered remission, I assumed my life would continue to be marred by worries about my physical and psychological health, low self-esteem and uncertainty.
As I was emerging into adolescence, a time when I should have been pushing boundaries and becoming increasingly independent, I felt terrified about moving forward, assuming my newfound freedom would be snatched from me through another relapse.
Luckily, 13 years on, I’ve remained in remission. I’ve lived in many places, in the UK and abroad during university, and settled into a job in the NHS supporting children in schools with their mental health. I’ve turned the trauma of my early experiences into motivation to support young people displaying early signs of mental ill-health, in the hope this will provide more children with the tools to manage their own wellbeing as they grow into adulthood.
My own experiences spurred me to pursue this career. The treatment I received for my physical health during my cancer journey had luckily been timely and effective, whereas support for my mental health, both during my treatment and after, was fragmented. I think the paediatric oncology community and society generally still have progress to make when supporting children who have experienced health-related trauma, especially in terms of mental health provision.
However, there have been incredible third-sector organisations, such as the Ellen MacArthur Cancer Trust, who provided me the opportunity to connect with other young people with cancer through sailing trips. These boosted my self-confidence after treatment, and I now volunteer for them to provide this therapeutic experience to other children in my position.
Helen Haar, 27, London
At 20, my world was turned upside-down. After months of feeling unwell, I was shocked to be diagnosed with cancer in March, 2016. The doctors at the time couldn’t tell me anything more specific until other tests were done. I remember the room spinning and feeling numb. It wasn’t until I arrived at hospital in London that I realised the seriousness.
After a few days and those dreaded scans, I received a diagnosis of Primary Mediastinal B Cell Lymphoma, a rare subtype of Non-Hodgkin's Lymphoma. My treatment started straightaway as the cancer was aggressive. The Teenage Cancer Trust walls became my source of stability every fortnight while I was having seven hours’ worth of chemotherapy. After this, a PET scan showed cancer remaining. Consolidation radiotherapy followed, putting me in remission in December, 2016.
That’s when the bubble burst. I was now expected to continue with my life, get back on track and forget what I’d just been through. It was the subject no one wanted to, or could, bring up. The hospital became my safe space, and I relied a lot on my team. When that was pulled from me, I panicked.
"Now, I wear my label as a cancer survivor with pride"
Now 27, I look back with mixed emotions. I’m still angry and ask, "Why me?" However, my perspective on life and the world has matured. I wear my label as a cancer survivor with pride. It’s made my passion to help others stronger. I don’t want to forget my story and I didn’t want to go back to my "old life". Sharing my story is what drives me—if it makes the slightest difference, it was worth it. The comment, "You’re too young to be ill" isn’t a compliment. It invalidates the experience and shows a remaining stigma around being a young person with a chronic illness.
Ultimately, how long has passed since treatment might matter when oncologists are deciding if we’re medically cured, and to us individually and to wider society—but it doesn't mean we can’t still carry the long-term impact of cancer survivorship with us.
So, whether 12 months or years have elapsed, and whether your hair has reached shoulder-length or you never lost it at all, you shouldn’t be presumed to feel fully recovered. But as the years go by, with more cancer charities reaching those in need, and treatments and later care developing, I'm confident that society will do more to aid these lingering emotions.
Although teenage cancer is uncommon, its research output, medical knowledge of late effects and emotional care shouldn’t be too.
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