A woman who contacted her GP three times during lockdown with worrying symptoms was shocked to discover that what was diagnosed as acid reflux was in fact terminal throat cancer.
Medics missed vital opportunities to diagnose Jackie Johnson’s condition and instead offered her treatment for acid reflux – a form of indigestion.
Even when, after she insisted, Jackie was eventually admitted to hospital she only found out that she had been diagnosed with cancer after a nurse accidentally left a set of notes on her bed.
Jackie, 50, now has stage four cancer of the oesophagus and has been told by medics there is no hope for her. The only treatment she has been offered is palliative chemotherapy.
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But Jackie and her partner Colin Stewart believe that there is still hope of a cure. They’ve found an expert who says that her condition could be treatable but first she needs a positron emission tomography scan (PET) to assess the location and severity of the tumour.
Jackie, from Kirkcaldy, was first given an appointment with the practice nurse but without any kind of examination the nurse told her she had acid reflux and diagnosed antacids.
Two weeks later she called the surgery again, this time she was given a telephone appointment with a doctor but he just doubled her original medication.
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Jackie was not convinced the diagnosis was correct and two weeks later she called the surgery again. Once more she was given a telephone appointment and once more the antacids were doubled.
But not once had anyone even looked down her throat and Jackie felt her condition was worsening.
In desperation she called a fourth time and asked for a referral for an endoscopy. She feared she may have cancer but her GP said she had all the “classic signs” of acid reflux.
Colin, 49, said the GP “reluctantly” agreed to refer Jackie to the endoscopy clinic.
He told the Daily Record: “Jackie asked the GP if she could have cancer but he said no and told her she had a ‘classic case of acid reflux’. But no one had ever examined her.”
Between then and when she eventually got her endoscopy eight weeks later – two weeks later than the national standard – her condition steadily worsened.
Labour’s health spokeswoman Monica Lennon said: “Cancer doesn’t wait and that’s why GP consultations and early diagnosis are so vital. We face a tsunami of cancer deaths unless the Scottish Government gets our NHS working again.”
Colin said while she was waiting on her endoscopy, Jackie was in so much pain she was no longer able to sit down and have dinner with him and her sons Lewis, 26, and Neil, 13.
She was restricted to small drinks of water and some soft foods
Her appointment on July 9 confirmed there was a growth but at that stage they were not sure if it was cancer. The confirmation came through six days later.
A panel of doctors was arranged to consider treatment but, before it met, Jackie was taken into the Victoria Hospital as she was getting weaker.
Colin said: “She was severely malnourished and dehydrated. She had been eating but more was coming back up than going down.”
After Jackie’s pre-op, a nurse left her notes on the bed. Colin said: “Jackie picked them up and read them. The notes said T4N1MO and underneath was written ‘patient unaware’.
“Jackie googled it to see what it meant and was shocked to learn the tumour was at stage four and had metastasised into the lymph node. But there had never been a biopsy taken of the lymph nodes.
“Jackie called over a doctor and he was embarrassed she had found out like that. He confirmed what she had read and then, Jackie said, ran away.” It was another two days before doctors met her properly to discuss her case.
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Colin said: “They told her it was terminal and she was going to have palliative treatment. They said it was unusual for this cancer to affect someone of her age as it normally affected much older people.
“But in order for her to be able to swallow the chemotherapy medication, they would have to put in a stent to open up her oesophagus. They told us it would be permanent and even if the chemotherapy shrunk the tumour they would not be able to operate because of the stent.
“We asked them to hold off doing it because we wanted a second opinion. But when they got the second opinion they said it was the same as their own.”
In desperation, the couple trawled the internet to find an expert in Jackie’s cancer and found one at Guy’s and St Thomas Hospital in London.
The consultant also does private work. They paid for the consultation and he told them there was a chance of a cure because of Jackie’s age and general good health but he needed to see the Pet scan to be certain.
If he thinks a cure is possible, the couple hope the treatment can be done in Scotland – but if not they may be forced to pay for it privately in London so they are looking into selling Jackie’s home to help fund it.
Colin said: “We just want to let people know about our experience about what’s really happening through Covid and how the NHS isn’t really open.
“All Jacqueline has been offered is palliative care but we know there are other options and while we are waiting for a scan she is not getting any treatment at all.”
NHS Fife medical director Dr Christopher McKenna said: “Unfortunately, for reasons of patient confidentiality we are unable to discuss the care of individual people.”
Jackie and Colin have launched a crowdfunding appeal to raise money for private treatment – to donate click here.
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