"All my symptoms pointed to pancreatic cancer, but because I was so young, the doctors couldn’t believe it."
- Alexandra Angeles Caycho
Raising awareness for cancer costs, the latest Young Lives vs Cancer research - sponsored by Guardian Financial Services - explores the financial impact of a cancer diagnosis on children, young people and their families.
With annual inflation having reached a four-decade high in the last year, the charity found that of those surveyed (259), monthly travel costs for cancer treatment averaged £250, followed by food (£144), energy (£68), clothing (£56), toys (£48), childcare (£30), parking (£24), telephone calls (£15), and accommodation (£14).
One family recounted that they’d had to travel “back and forth for over fifty miles every day for ten days while our teenager was hospitalised,” while another explained that “if I’ve got to have treatment, I get a weekly ticket for both me and my mum […] that’s £360 just for the train ticket. I’ve then got to get a single day ticket […] so it’s another £75 on top. Weekly parking is about £50 so, what's that? £410, just for the train and parking.”
The majority of young cancer patients and their families face an average income loss of £6k annually, with 40% having to take sick leave, compassionate leave (35%), change to more flexible working arrangements (35%), or retire early (32%).
READ MORE: 71% of young cancer patients and their families fight financial penalties every day
In the last thirty years, cancer incidence rates in 25-49-year-olds in the UK have increased by 22% (as of 2018) which is the biggest percentage increase across all age demographics. Yet, despite this trend, young cancer patients and their families have to fight to receive a diagnosis - often enduring physical and mental challenges before they’ve had a chance to consider the financial ramifications of receiving cancer treatment.
“A doctor listening to somebody over the age of 60 talking about difficulty passing stool, feeling tired and bloated, is going to take those symptoms a lot more seriously than a young person in their 30s who doesn’t fit the typical profile of a person with cancer. They might put it down to irritable bowel or work stress, so there’s plenty of cases where people’s symptoms are dismissed instead of being referred for blood tests,” stressed Sonali Johnson, Head of Advocacy at the Union for International Cancer Control (UICC).
To illustrate this reality, Protection Reporter spoke to Alex, a 20-year-old student studying at Lancaster University, about having to advocate for herself after being told she was too young to have cancer.
“It’s not something you think about until it happens to you. I honestly never thought I’d be in this situation; it’s almost like a fever dream. Some days, I wake up and I’m like: What? What is going on? Oh yeah, I’m sick.” This is how Alex felt after being diagnosed with stage 3 pancreatic cancer earlier this year.
“It’s a day I’ll never forget.”
Alex’s symptoms began in November last year. She’d been playing in a rugby match the day before. Waking up, she had all the usual aches and pains you’d expect after eighty gruelling minutes of scrums and swan dives, but persistent back pain resulted in Alex consulting her GP in early December. She was told she had flat feet, and that arch support would resolve the pain. Fast forward to March, Alex continued to suffer from severe back pain which was now interrupting her studies.
As a Fine Art & Design student, Alex specialises in ceramics which often involves her sitting in awkward positions for long periods. Speaking with her department, Alex was given support and advised to apply for extenuating circumstances further down the line.
It wasn’t long before she noticed changes in her stools. Two weeks later, her urine began to get darker. She initially thought this was due to dehydration, “drinking enough water has always been an issue for me, so I thought I just needed to drink more.” But after a week, Alex began to worry. “I wasn’t sure if the symptoms combined were more of an emergency or if I should wait for a GP appointment. So, I called 111 and they said I was fine so long as I didn’t have five or more spells of diarrhoea a day for more than three days and drank more water.”
On the 22nd February 2023, Alex noticed that she was jaundiced.
“It was so slight that nobody other than me could tell the difference.”
A few hours later, she decided to call 111. After reporting her symptoms, she was told they’d call her back. “At this point, it’s almost midnight, and I’ve fallen asleep. I get a call at 1am with a voicemail telling me to go to A&E. I get another call at around 2am with another voicemail saying they hope I’ve gone to A&E and that they’re worried about my liver. I get another call at 3am with a voicemail asking me to please go to A&E tomorrow morning to get a blood test.”
When Alex finally went to A&E the next day, she had to really advocate for herself, continually telling the staff that she’d called 111 and had several voicemails saying she needed a blood test. “If they hadn’t mentioned that in the call, they probably would have sent me home but since it sounded like I knew what I was talking about, they listened to me.”
Alex waited over eight hours before she had a blood test and even then, she could “see in the doctor's face that she didn’t think anything would come of it.” After another four hours in the waiting room, Alex was called into the doctor’s office where she was told that her bilirubin was high, and they were concerned about her liver. She then had an ultrasound followed by MRI and CT scans which revealed a mass in her pancreas. Throughout these tests, her doctors kept saying, “It’s probably a cyst, it’s probably benign, you can’t have cancer” – especially not pancreatic cancer which is usually diagnosed at an average age of 77 years old.
“The doctors said it was impossible, you’re young, fit and healthy, you can’t. But here I am with pancreatic cancer at 20 years old.”
On the 17th March 2023, Alex was formally diagnosed with stage 3 pancreatic cancer.
Before Alex started chemotherapy, she decided to freeze her eggs. “I’m young, I’m twenty, you don’t think about your future family making plans. I wasn’t even aware that chemotherapy could make you infertile until a cancer charity spokesperson told me.” This meant Alex had to have various injections before going to a specialist clinic. Unfortunately, this experience was quite traumatic with the doctor asking for her prognosis and acting as if she had “demanded for this.” She felt that he was “making it sound like there was no point getting fertility preservation if I was going to die and that was a very tough conversation to have.”
“He was acting all doom and gloom, like ‘you’re going to die, there’s no point.’ It had been less than a month since my diagnosis.”
Eventually, Alex had her eggs harvested and started chemotherapy later that week. Her oncologist had explained the side effects, but she quickly realised that “nobody really prepares you for what the day will be like; you don’t know what it’s like until you actually go.” As expected, the first chemotherapy session wasn’t too bad but before long Alex began to experience severe nausea, constant diarrhoea, and fatigue. This continued throughout her treatment; “some days I handled it really well and other days I didn’t.”
Since this interview, Alex’s latest CT scan revealed that her cancer is responding well to chemotherapy, and she remains hopeful that the next round of treatment will end with surgery.
