A teenage girl who begged doctors to take her rare liver cancer seriously after researching the disease on the internet died after doctors told her to “stop Googling” her symptoms.
Heartbreaking diary entries and tweets reveal tragic Bronte Doyne, 19, was repeatedly dismissed by medics despite correctly predicting her disease would return.
One doctor even told the terrified teenager that her dramatic weight loss, which saw her lose two stone in a month, was because she was “part of a skinny family”.
Her final text to a friend two weeks before she died in 2013 reveals how Bronte was “fed up of trusting” medics after an oncologist told her the cancer was rare in young people when in fact the opposite was true.
She wrote on March 9, 2013: “I can’t begin to tell you how it feels to have to tell an oncologist they are wrong, it’s a young person’s cancer. I had to, I’m fed up of trusting them.”
Tragically, Bronte died two weeks later on March 23.
The college student was first admitted to the Queen’s Medical Centre in Nottingham in September 2011 with suspected appendicitis.
She had to wait four weeks for an MRI scan and was given the devastating news she had cancer shortly before her 18th birthday in November that year.
Doctors diagnosed her with fibrolamellar hepatocellular carcinoma (FHC) – a rare cancer of the liver – and underwent resection surgery in December 2011.
Over a 16-month period Bronte was told by doctors she would survive the cancer, which affects 200 people globally a year, and had nothing to worry about after having an operation.
But after doing their own research online, her family discovered from a US government-endorsed website that there was a very high chance the disease would return.
When they put that to a doctor at the hospital, which is run by Nottingham University Hospitals NHS Trust, Bronte and her family were told to “stop Googling”.
Her devastated mother Lorraine Doyne, 50, has now released texts, tweets and personal diary entries which show her daughter’s concerns about the way doctors were treating her.
In one diary entry less than a month before she died, Bronte wrote: “Mum tried to talk to my consultant but he didn’t give her much help.
“She even had to ask him when I was going to get my appointment for the oncologist. Really don’t think he likes my mum asking questions.”
Bronte also wrote about a series of events where she felt doctors weren’t taking her symptoms seriously.
She was advised by her GP to go to hospital as an emergency case when her symptoms worsened six weeks before her death.
But when she got to the Queen’s Medical Centre she was told by a doctor that she didn’t need to be seen.
In a diary entry, she wrote: “I got so angry because the doctor was so rude and just shrugged his shoulders.
“He gave me a sarcastic comment like you can sleep here if you want but they won’t do anything. So I just have to wait for another hospital appointment.”
Her mother Lorraine, from Edwalton, Nottingham, has blasted Nottingham University Hospitals NHS Trust for showing a “woeful lack of care and empathy” towards her daughter.
The bookseller, who lives with her other daughter Kerrie, 24, said: “We had no information forthcoming and the only sources we found were through our own research.
“While she was in recovery in the hospital in December 2011 we researched her cancer and she discovered it had a high recurrence rate.
“We found a website for the Fibrolamellar Cancer Foundation, which is based in the United States, and it included an international forum.
“It’s not just some pathetic website on Google, it’s been endorsed by the White House in publications, and was the only contact we had to get some awareness about this disease.
“But that information was dismissed by the doctors. I told the clinician that I knew what was happening to my daughter and something needed to be done but I was just told to ‘stop Googling’.
“We were banging our heads against a brick wall even at the start.
“When her symptoms continued we went back to the doctors but their response was always the same ‘stop Googling’. I can’t help feel that if the doctors had listened to us in 2011 things might be different.”
“By the time they diagnosed her correctly it was too late for clinical trials or for further treatment. It’s heartbreaking to read her diary entries now because Bronte knew she was right but no one listened to her.
“Bronte was denied pain relief, referrals were hugely delayed and efforts by her family to gather information and understand Bronte’s prognosis were handled in an evasive and aloof manner.
“Her fears that her symptoms over the preceding months before she died were cancer-related were proved right.
“I can’t bring Bronte back and neither can they. It is a very scary world when you have got no information.
“I know this was an incurable illness but Bronte could have had a lot better quality of life, she would have had pain management, she wouldn’t have been so terrified at the end of her life.
“The messages from Bronte are all her own words and I believe that’s more powerful for people to understand what she went through.”
Lorraine has since worked with Nottingham University Hospitals NHS Trust to improve how doctors deal with patients.
She added: “I’m glad the issue has been highlighted and they have made recommendations to do something but now I want to see action so future patients have a better outcome.
“I want to see changes and action now.”
After she was diagnosed with cancer, Bronte wrote in her dairy: “I have cancer. I’m scared. Mum rang keyworker. Need to know what this is. He doesn’t know much. Help me.”
Just seven months after she had the operation, despite being told by doctors she was fine, she tweeted: “My body does not feel very good #helpme.”
And in November 2012, she wrote in her diary: “Feeling sick for months now. Tired of this feeling crap. Hospital not worried so trying to get on with it.”
Her growing desperation in the weeks leading to her death was evident as she wrote on February 18, 2013: “I feel things aren’t good but no news from hospital. Need answers.
“Want to know what’s going on. Something’s not right. I’m sick of this.”
Bronte was eventually referred to the Hogarth Ward, a Teenage Cancer Trust unit, where she stayed for ten days before she died.
Lorraine, who is separated from Bronte’s father, added: “We asked after the surgery if they were suspicious the cancer could come back but their response was ‘how will that help Bronte?’
“We were told they will be seeing her over the next 20 years – it made her feel relieved but she still didn’t feel quite right.
“We weren’t given any information by the hospital about this but we did know it had a really poor outcome, yet they did nothing and just left us to wait and dismissed her concerns.
“When you’re diagnosed with a rare cancer you fall into this black hole of not being able to access clinical trials or anything like that and it becomes a cancer lottery.
“That’s why communication should be one of the first priorities.”
Nottingham University Hospitals NHS Trust have apologised to Bronte’s family after admitting they “did not listen with sufficient attention”.
Medical director Dr Stephen Fowlie said: “Bronte died less than 16 months after diagnosis of an extremely rare cancer and prompt surgery.
“We explored all potential treatments, including participation in trials at other centres when her cancer returned.
“Sadly, there were no further surgical, chemotherapy or radiotherapy treatment options for Bronte’s very aggressive cancer.
“We apologise that our communication with Bronte and her family fell short. We did not listen with sufficient attention.
“We should have referred Bronte to the expert support available from the Teenage Cancer Trust much sooner.
“We are sharing the learning from Bronte’s experience. Lorraine is assisting us to improve how we help patients.”
