A young woman has revealed the “horrible” way she learned she had cancer – after reading the news on a health app on her phone.
Freya Hodge had spotted a painless lump in her armpit, but wasn’t overly concerned, waiting four weeks for a GP appointment and continuing life as normal, including her rock climbing hobby.
The 21-year-old was referred for an X-ray, with her GP guessing a dislocated bone could be the cause.
The surgery called to schedule an appointment to discuss the results, but when Freya checked the NHS app on her phone, she was delivered a terrifying blow: they had found a tumour.
“I thought I had just been handed my death sentence,” the young woman, from Uckfield, East Sussex, told Need To Know.
“I was so shocked – it didn’t feel real.
Freya, who had been on holiday in Norfolk with her family at the time, hadn’t been able to go in immediately for the appointment, and was promised a phone call shortly after she received the initial message in April 2024.
But in the meantime, she decided to check the app – and saw she could read the results for herself.
In the notes it said, ‘tumour characteristic of a malignant bone tumour – osteosarcoma’.
Freya said: “As I’m sure a lot of people who have experienced this will agree, when you’re told you have cancer you immediately think you’re going to die.
“I began Googling all the medical jargon I didn’t understand in the hopes that potentially it wasn’t what it looked like.
“Not once since I felt the lump on my arm did I think it could be cancer.
“I was 21, healthy and had done nothing in my life to warrant this happening to me and yet there it was, in black and white, as they say.
“That nauseating feeling of panic slowly filled my body; when you suddenly feel very warm and your heart starts beating rapidly.
“The 10 minutes I waited for that phone call felt like an age and I was just consumed by severe anxiety and panic – the feeling is honestly very hard to put into words.
“When the GP called, I don’t remember a thing they said, I just cried.
“After the call ended, I went to my mum to tell her what had happened and collapsed in tears.
“I wish the results hadn’t been on the app before I’d had a chance to speak to a doctor.
“It was a horrible way to find out.”
Freya didn’t tell the GP that she had already read her results, and was supported by her parents at the time.
She said: “My mum has since told me that she had an inkling that the lump in my arm might be something serious but hadn’t wanted to worry me whilst we were waiting for the results. “My grandmother had actually passed away from a soft-tissue sarcoma around 10 years before, so my family was very familiar with sarcomas and how brutal they can be.
“It was still a shock for her to see it in black and white.”
In hindsight, Freya believes her results shouldn’t have been shared on the app prior to her being told on the phone due to their serious nature.
She said: “The X-ray results I received had severe implications and required almost immediate action.
“For that sort of scenario, I believe they should not be put on the app until a formal conversation/meeting with the doctor or consultant.
“I think the transparency of having the results of tests available on the app is extremely helpful, but only after they have been discussed with the patient first.
“I would have liked it told to me by a medical professional in a conversation, where it could be explained to me in a safe environment.
“I completely acknowledge that my GP had planned on doing this after the results came through but because I was on holiday it was not possible.”
Freya was referred for an additional X-ray, plus an MRI and biopsy.
Unfortunately, due to a mistake the biopsy had to be redone, delaying her official diagnosis for two weeks.
But in June 2024, her worst fears were confirmed, and Freya was diagnosed with a rare cancer called Parosteal osteosarcoma.
The emotional impact of her diagnosis hit hard.
She said: “For about two weeks after the phone call, I couldn’t shower because the sight of my own body made me upset.
“I felt it had betrayed me.”
Freya was studying journalism at Sheffield University at the time but decided to return home to Uckfield so that she could be treated closer to home at the Teenage Cancer Trust unit for young people at UCLH in London, which specialises in cancer treatment.
She also had to make some critical decisions about her treatment and, due to the rarity of her tumour, struggled to decide the best course of action.
She explained: “My options were doing chemotherapy or not doing it.
“However, because of the lack of research into the tumour type, my oncologist couldn’t recommend either one.
“This was an extremely hard period for me as I had nothing to go off of – there was a chance that chemo would benefit me, but it wasn’t proven, and the drugs I would be on were very intense.”
Freya says she researched her options ‘furiously’ and her oncologist managed to get the opinions of five other oncologists from around the world, which steered her decision to undergo chemo.
She went on to have six rounds, and lost her hair – something the young woman found difficult.
She said: “When I was told the drugs I was going to be on would definitely cause me to lose my hair, I cried.
“As superficial as it sounds, my hair was such a big part of my identity.
“I had long, blonde, curly hair – a trait that had followed me since I was a toddler – and losing it felt like losing myself.
“Despite my love for it, I decided to shave my head a few days before my first chemo.
“It was important to me to be in control of the situation and take my hair before the treatment did.”
Like many people with cancer, the mental impact of cancer and treatment hit Freya hard.
She added: “During treatment, I developed quite severe anxiety and panic.
“I began having panic attacks daily, some of which made me go into the hospital as it was the only place I felt safe.
“I was given counselling and began attending sessions weekly, but eventually it got so bad that I was put on medication.
“The nurses helped me calm me down and put me more at ease – my interactions with them got me through those long days.”
Freya’s treatment started on 11 December 2024, and she was extremely unwell in the run up to and over last Christmas.
She said: “The unit was decorated and there was a Christmas tree. That helped a lot as it was still Christmas, and it was good to still celebrate the holiday in that way.
“I had chemo for three nights and four days in that cycle.
“I was able to go home for Christmas, but because it was the first round of chemo, I felt very rough, and my body was struggling to adjust.
“One of the chemo’s I was on promotes severe nausea, and so I was still throwing up at Christmas time.
“It was not fun at all.
“I normally go out on New Year’s Eve, but instead my two best friends and I ordered food and watched the countdown on TV.
“It’s not the typical thing a 21-year-old does, but my friends made it bearable.
“My family and friends tried to make that period as perfect as they could, but I had an overwhelming feeling of dread and couldn’t get excited as I knew I had more chemo to come in the New Year.”
Freya’s treatment ended in March and she was thrilled to receive the all-clear in May.
She’s now looking forward to a healthier, happier Christmas this year.
Freya said: “I am feeling more myself.
“Last year I didn’t – it’s a big thing to lose your hair and feel a loss of control over your body.
“I was surrounded by family and friends, but I didn’t feel myself.
“For New Year’s Eve I will be going out and seeing friends and be embracing being 22 and healthy again.”
This year, Freya is backing Teenage Cancer Trust’s Christmas fundraising appeal, and added: “Teenage Cancer Trust was a blessing throughout my treatment.
“The support they gave my family and I carried us through the lowest moments of that period.
“Going through something devastating and so life-altering can be alienating, especially when you are constantly told you’re ‘too young’ to be in that position.
“However, to be able to walk into a place that not only understands your unique medical needs but also embraces and celebrates your personal identity is invaluable for a young person going through cancer.
“It was the support and friendship that I received from both staff and other patients at the Teenage Cancer Trust that motivated me to successfully make it to the end of my treatment and be fortunate enough to be where I am today.”
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