When you hear a cancer diagnosis hurtling at you, your mind spins to somewhere far away. The door of the clinic, clamped shut away from everyone else’s ears, only leads to more hospital mazes, the rational side of you knows. But the panicking dreamer inside you is convinced it could be a portal throwing you elsewhere, idyllic, or just your old life.
Then your psyche will push you to another faraway place – the future – that’s not looking rosy. You see something impossible to vocalise – your future whipped away in a blink, ending before beginning.
I’m Ellie, and in 2011, I became one of the approximately 2,300 young people diagnosed with cancer annually in the UK. Mine was the fairly common blood cancer, Hodgkin Lymphoma, and I was 15. Although this was almost half of my life ago (now I’m in my late 20s) – all starting 14 years ago this month – and it’s left my life physically, it hasn’t entirely.
When many of us realise cancer has unwelcomely entered our realities, we presume it will end badly. People still associate this umbrella of diseases with death, despite more promising pictures being painted about survival.
There’s a lot to take in during the immediacy, then interim, but even when you’ve collated your questions, reassessed what your life might resemble and tried to recalibrate, there’s an element you’ll probably miss off until you’ve been in the cancer club for quite some time. It’s something I think should be closer to the fore for many members of the demographics swept up by these diagnoses. Patients, survivors, clinicians, nurses and the public come under that. After all, when was the last time you paid much attention to late-effects?
Understandably, you might not know what these are. As Ashley Ball-Gamble, CEO of Teenagers and Young Adults with Cancer, tells me: “Young people diagnosed with cancer can be left with lifelong side effects of it and its treatment, such as heart problems, mobility changes and cognitive difficulties.
“Sometimes these late-effects don’t begin until months or even years after treatment ends.”
These subsequent years taught me cancer doesn’t end when treatment does, yet late effects remain an overlooked category. I feel this is a gap needing to be bridged, especially because of the sobering statistics surrounding cancer incidence. I’m not alone in this, as my case studies ahead show. They will join me in covering a precis of our experiences and late effects so far.
Changing perspectives
If you respond well to modern medicine, what happens next?
There is growing awareness that cancer survival isn’t linear, but there's still not enough on how late-effects emerge long after you’re discharged from your oncologist’s office. When follow-up scans stop, new problems can start. Then they might form new backdrops to your life.
Those diagnosed in early years should enjoy decades of good health, seeing the need for this even more after our initial diagnoses.
On a purely medical level, the reasons for this disparity can add up – for now. Until recently, there weren’t many survivors of young adult cancers. Cancer Research UK says the five-year population-based survival for young people’s cancers increased from 79% in 1997-2001 to 87% in 2012-2016. Pre-1970s, survival was even rarer, meaning limited time and research poured into late-effects years on.
But this means a hefty proportion pay the price. The National Cancer Institute estimated 60% to 90% of childhood cancer survivors develop chronic conditions, sadly rising to 20% to 80% of survivors experiencing severe complications during adulthood.
Lymphoma lurking
When diagnosed with lymphoma, I didn’t know much about it, despite encountering it in my GCSE class, and knowing it was common in young people.
But I soon started to learn a lot. I did know how its symptoms had made themselves known to me repeatedly throughout the school year, not caring that I was just trying to focus on getting through Year 10!
My life is now approaching a crossroads where half contained no cancer, and the rest has held it in close confines.
This isn’t to say I responded poorly to treatment. Formally, I haven’t been a patient since the year I became one, avoiding relapses and invasive treatments such as stem-cell transplants or radiotherapy. Instead, I gratefully completed four cycles of IV-chemotherapy, plus steroids and oral chemo with minimal complications, then continued with my teens.
But as Teenagers and Young Adults with Cancer (TYAC) points out, late-effects can affect the heart, hormones, lungs, bones, concentration, mobility and fertility. This is without the normal re-navigation into society, education, employment and relationships, and sits separately to the real risk of reoccurrence.
I have fairly regular cardiac monitoring and occasional check-ins with Endocrinology, set to increase during pregnancy, as chemotherapy can damage the heart. But through the fault of no one in particular, not much else. My immune system still feels sluggish, including a recent glandular fever that stuck me on drips in A&E.
However, cancer has stayed with me in other ways. Much is from choice – I’m passionate about helping others handle their journeys, raising awareness, and chronicling cancer.
Also, I’m not alone in thinking our histories deserve more focus now we’re ‘moving on’. I spoke to case studies at different stages of life, but both also in remission from lymphoma, about how their relationship with cancer has morphed, not vanished.
Survivors say
“My experience as a young adult cancer survivor will stay with me, altering my path, including education, health (physical and emotional), and relationships. It inspired me to pursue a new career, alongside young people with cancer. I’m studying this now, having completed a degree on teenage and young adult cancer”, reflects Helen Haar, who’s 28 but was diagnosed with Non-Hodgkin Lymphoma at 20.
“Late-effects as a young adult can be hard to come to terms with. I’m monitored yearly for cardiovascular issues and breast screening after having radiotherapy so young. I’m also seeing if my fertility has been affected by chemotherapy. I wasn’t given chance to freeze my eggs, so this will give answers I’ve wanted for years. This will be hard, as I’ve always wanted a family, and the possibility it may not become reality gets more real every day.
“I recently returned to counselling, as my cancer journey consumed a lot of thoughts, eight years later. Through a charity that supports the mental health of those affected by cancer, I found comfort telling my story from start to present to someone impartial, giving me space to open up.”
Helen continued: “The late-effects of cancer on young people can be isolating, feeling low and lost. It’s important more is done to support those who transitioned from teenage and young adult to adult services, and are investigated for late-effects, physically and psychologically.”
Similarly, Helen Allen had Hodgkin Lymphoma in 2007. However, five years ago, she felt similar symptoms, like night sweats and fatigue.
“The first time chronic fatigue was mentioned was during my tenth annual check-up. I looked up my symptoms and coincidentally also researched those of menopause. I had lots of them, but still the fear it could be the cancer returning.
“I’m on HRT (Hormone Replacement Therapy) now, but fatigue still takes me back to pre-cancer diagnosis, wondering what was wrong.”
Together, we can use World Cancer Day to call for greater awareness of both mental needs, through counselling, and physical, via more knowledge and screenings for young adult cohorts. We see this in other disease demographics, so it would be promising if youth cancer survival followed suit.
