DHB member fought to get cancer diagnosed
Five doctors, a dietician and a gastroenterologist all missed Andy Dickerson’s neuroendocrine cancer.
After he was misdiagnosed with irritable bowel syndrome (IBS) and put on a low fodmap diet, the longstanding Canterbury District Health Board member did his own research and found his symptoms – persistent upset stomach, flushing and wheezing – were a match for neuroendocrine cancer.
When Dickerson told his doctors what he had found, they told him they had never seen a patient with this cancer before and testing for it was probably a waste of time, he said.
But blood and urine tests, followed by a CT scan, confirmed the diagnosis in September 2018 – two years after he first began experiencing symptoms.
Within minutes of his first consultation with an oncologist at Christchurch Hospital, she also diagnosed Dickerson with carcinoid heart disease, a serious complication of neuroendocrine cancer arising from delays in diagnosis.
This required major heart surgery in Auckland in early 2019.
He then went through a battery of tests to confirm his life span and quality of life could be much improved by accessing peptide receptor radionuclide therapy (PRRT).
The therapy, which uses drugs to identify and attack cancer cells while reducing harm to healthy tissue, was only available in Melbourne at the time. It has been funded in Australia for years, but New Zealanders used to have to fork out about $60,000 to access the treatment there.
In 2019, Pharmac approved funding for about 30 Kiwis per year to travel to Melbourne for treatment.
Dickerson was booked for PRRT in April 2020, then Covid-19 hit and travelling to Melbourne became impossible.
The Government set up an interim PRRT service in Auckland several months later for the 12 most urgent patients.
Dickerson believed he was patient number 12. He started PRRT at Auckland Hospital in December 2020.
Unicorn foundation chief executive Michelle Sullivan said about 3000 Kiwis had neuroendocrine cancer. They could live with the condition for decades, provided they had access to the right treatment, she said.
About 50 people needed PRRT in
New Zealand each year, which meant more than 30 people did not know when they would have access to funded treatment in Auckland, Sullivan said. Many would die or be very ill without the treatment, she said.
Their only option was to pay for their own treatment in Melbourne, which would cost four times as much – about $60,000 – excluding managed isolation costs in New Zealand and in Australia.
Australia had done PRRT for 20 years and New Zealand was just catching up, Sullivan said. The treatment did not work for all patients, but could ‘‘completely knock down the tumour’’ for many.
‘‘Clearly, I shouldn’t have had to diagnose myself, but I am doing OK and am happy with the care I am receiving.’’
Andy Dickerson
An Auckland District Health Board spokeswoman said authorities were working to set up a permanent PRRT service this year. It was still unknown how many patients would have access to it.
Because the cancer was rare and the symptoms so similar to other conditions – including IBS, adult-onset asthma, gastritis, anxiety or menopause – it took an average of five years for patients to be diagnosed with it, Sullivan said.
Found early, neuroendocrine cancer was straightforward to treat. But for more than half of patients, the cancer had metastasised by the time they were diagnosed, which reduced their treatment options and life span.
Dickerson said he did not feel any anger at the doctors who misdiagnosed him.
‘‘Clearly, I shouldn’t have had to diagnose myself, but I am doing OK and am happy with the care I am receiving.’’
He was grateful to be treated in Auckland rather than having to go overseas during a global pandemic, and said he had received ‘‘outstanding’’ care in Christchurch and Auckland.