Erin Johnston said she knew her body
A young teacher was diagnosed with breast cancer at the tender age of 22 after discovering a “pea-sized lump”. Erin Johnston, from Greenwich in south east London, first encountered the cancer diagnosis in December 2019 when she noticed a “tiny” irregularity on her breast.
Despite doctors initially assuring Erin that the lump was likely harmless due to her youth, a biopsy shockingly revealed she had stage 1 breast cancer. Now 28, Erin said: “It was a real rollercoaster. When I first noticed it, it was tiny – it was a pea-sized lump.
“But I knew my body and I knew it wasn’t normal. I called my GP and got an appointment that same day and they referred me to hospital for a biopsy.
“I felt scared, but the doctors were so calm I thought it would be fine. But then when I had the biopsy I just knew it was something.
“Luckily, it hadn’t spread and was treatable. I had caught it really early and, crucially, I was taken seriously by both my GP and the team at St Guy’s Hospital.”
In the early months of 2020, Erin underwent two surgeries – a lumpectomy and a DIEP reconstruction – followed by chemotherapy and preventative hormone therapy. Due to the hormone treatment, Erin was given the option to freeze her eggs.
She said: “I just remember that I was so young. At the time, I didn’t even know if I wanted children.
“I had only just finished university; I hadn’t even started my career. It all felt so far in the future. I just felt like I had to grow up really quickly.”
Erin made the decision to freeze her eggs, a service provided by the NHS, and in August 2020, she received the all-clear. The primary school teacher believed she had put it all behind her, but in May 2023 she discovered another abnormality – this time a “very small bit of hard skin”.
She said: “It was smaller than a centimetre. Again, that was my only symptom.”
Tests revealed that Erin’s cancer had returned – leading to further surgery and the commencement of radiotherapy. Erin was once again declared cancer-free at the close of 2023, but continues to undergo preventative hormone therapy, which is now set to conclude in 2028.
This means that the option to store her eggs is no longer available on the NHS – and she must bear the cost herself if she wishes to have children in the future.
Erin said: “When I first froze my eggs in 2020, the hormone therapy was due to last five years and end in 2025. Then, I was meant to have the choice about what I wanted to do about my fertility.
“But it’s been taken out of my hands now. I have to extend freezing my eggs if I want children in my future.
“If I hadn’t had that recurrence, children might be something my partner and I would have been considering at this point. But now it just feels like we’ve had to put our lives on hold.”
Erin said the yearly expense of storing her eggs stood at £350, which represents a reduced rate due to her referral from an oncology department.
Whilst Erin acknowledges the sum isn’t “a huge amount”, she believes it would still prove challenging as she and her partner Jordan, 28, are presently putting money aside for a house.
She also considers the circumstances “unjust”, given she had no choice regarding freezing her eggs initially.
Erin said: “That letter – the one that confirmed I’d have to pay moving forwards – it was really hard to see after everything. It was upsetting.
“I guess at this point as well I’m almost two years cancer-free and I’m starting to see my life get back to normal. Then it’s another thing you have to do as a result of the cancer.
“Throughout the past five and a half years I feel proud of how I have navigated it all. I’ve stayed positive and calm.
“But being asked to pay for my eggs, despite a recurrence and still being in treatment, feels deeply unjust. Because this isn’t something I chose.
“It’s difficult too because there are other things we’re thinking of – like we’re trying to save money to buy a house. But then there’s this other payment we have to think about too.”
Erin and Jordan disclosed the circumstances to their relatives and mates and numerous people instantly volunteered to assist. From that point, additional people learnt about it and wished to contribute, leading the pair to establish a GoFundMe.
Erin said: “I’ve always felt really lucky with my support system. My family, my boyfriend’s family, our friends – they’ve all been there ever since I was first diagnosed.
“We didn’t know we’d have to do this, but it’s amazing to have people we can call on. Most people in their 20s or 30s aren’t having to plan in the same way, but of course going through something like this changes the way you talk about becoming parents.
“We definitely want to have children and so this is how we keep that door open. We’ve paid for the first year of storage and then from what we’ve raised so far we’re going to try pay for the next few years. We’re really grateful.”
Erin also wished to highlight her ordeal to boost understanding of her symptoms – and urged others to seek medical advice.
She said: “My lump was so small that I could have ignored it and it could have sat there for years growing and growing. If I had done that, it could have been a completely different story.
“I think people often think, ‘Oh, it’s a small thing,’ or, ‘Oh, I feel well otherwise’. But it’s really important people get checked out – and important that people are taken seriously no matter their age. So awareness is really important to me.”
At the time of writing Erin had collected roughly £1,400 of a £1,800 target through GoFundMe.