Published: 16:45, 14 December 2020
| Updated: 12:39, 15 December 2020
A mum-of-four endured a crippling course of cancer chemotherapy and feared she could “drop down dead” at any moment - only to be told she never had the disease.
Janice Johnston’s weight plummeted to just seven stone as she underwent the gruelling treatment following her diagnosis at the Kent and Canterbury Hospital.
The 53-year-old also suffered receding gums, aching bones, nausea, fatigue and dizziness while taking tablets to tackle the rare cancer, polycythaemia rubra vera (PRV).
She even quit her job at the St John Ambulance nursing home in Whitstable after being told she would have to take the medication for the rest of her life.
But after seeing few improvements in her condition, Janice was referred to Guy’s Hospital in London, where she was told doctors in Canterbury had made a mistake.
“I was livid. For nearly two years I woke up every day thinking I had cancer,” Janice remembered.
“I thought it was going to shorten my life or that I was going to drop down dead.
“Those are two years of my life that I’ll never get back.”
The former auxiliary nurse was told she had the cancer, which afflicts just two in every 100,000 people, in April 2017, after experiencing high blood pressure, blurred vision and dizziness.
She compares her symptoms prior to the diagnosis to “putting your head in a vice and tightening it”.
Medics at Kent and Canterbury decided she had PRV – a disease of the bone marrow that causes the overproduction of red blood cells – without carrying out a biopsy or ultrasound scans.
“The consultant said I was going to be on this chemotherapy for the rest of my life,” Janice said.
“He said ‘if you don’t take it, you’re at high risk of having a heart attack, a blood clot anywhere in your body or a stroke’.
“It was on my mind for 24 hours a day.”
The doctors’ diagnosis was guided by the results of blood tests that showed she had a high number of red blood cells.
Over the following year and a half, Janice says the doses of chemotherapy were increased whenever she reported that her condition had not improved.
The married mum was also treated with a venesection – a procedure that removes blood from the circulatory system – every fortnight.
“It was horrible. I felt rough all the time and had no energy at all,” she added. “I had no choice but to resign from my job.
“Occupational health said to me that, because of all the time I’d been on chemo, my immune system was low and there was nowhere in the nursing home I wouldn’t be exposed to infections.”
When Janice told her doctors that she wanted to try other kinds of treatment, she was sent to speak to specialists at Guy’s Hospital.
During an appointment there in November 2018, she says her consultant told her almost immediately “I don’t think you’ve got polycythaemia at all”.
The doctor’s suspicions were confirmed two months later after receiving the results of a bone marrow biopsy and ultrasound scan of her spleen.
“I’m still angry because I feel like a fraud,” she continued.
"I was a guest of honour at the Race for Life in Margate and I stood on the stage in front of thousands of women talking about this cancer I didn’t have.
“You feel like people are looking at you and whispering ‘she never had cancer – she’s made it up’.”
“I’ve lost faith in doctors – I just don’t have trust in them.
"If at the start they gave me a bone marrow biopsy and a scan, then I wouldn’t be sitting here now and I’d still have a job.”
Janice instructed solicitors from Girlings to pursue a medical negligence claim against the East Kent Hospitals Trust soon after receiving the news.
The law firm sought the opinion of a consultant haematologist, who concluded that an ultrasound scan and bone marrow biopsy should have been carried out before making the diagnosis.
Shantala Carr, of Girlings, said: “This is a case where straightforward investigations, which were not carried out, could have avoided the immense physical and emotional suffering that Janice went through and continues to go through.
“Not only did she have to deal with the emotional anguish of thinking she had cancer but she had to give her husband and four children the devastating news.
“Failings like this that can impact someone’s life in such a drastic way are simply not acceptable.”
Watch: KMTV's report on Janice's misdiagnosis
The case was settled out of court for £75,950 after the trust admitted liability at the beginning of this year.
Tests showed that Janice has a non-cancerous condition that causes her to produce high numbers of red blood cells.
She is urging others told they have the disease to "make sure they are diagnosed properly".
She claims to know other PRV patients who have not had the necessary assessments carried out before being diagnosed with the illness at Kent and Canterbury.
An East Kent Hospitals spokesperson said: “A misdiagnosis of this kind is exceptionally rare and we wholeheartedly apologise to Ms Johnston for the omission in her care.”