For five years Patrick Montgomery was unaware he had a rare cancer after both his specialist and GP failed to pass on the message.
After he was finally told - following failures across both the public and private health systems - a scan showed the cancer had spread. But in another failure, a radiologist didn't pick it up in a scan.
The Rotorua man is now in palliative care and undergoing chemotherapy while trying to spend the time he has left with family.
"Had I been properly informed and properly treated I have a strong belief that this cancer could have been eradicated. At the very least I would have had options that may have increased my survival chances by a huge margin.
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"After 55 years of working life, I was looking forward to an enjoyable retirement with my family and suddenly this lovely feeling was gone."
The 73-year-old married father of two, a former chef on fishing boats, is speaking out in an attempt to stop failures from happening again.
It comes as the Government prepares to announce its plan on how it will battle the nation's biggest killer.
Advocates hope it will put an end to regional and ethnicity inequalities in treatment. A lack of funded life-saving drugs, symptoms being ignored or misdiagnosed and flawed performance reporting is also costing lives .
Montgomery's plight started in 1999 when he slammed his right ring finger in a car door. It continued to swell and doctors put it down to an infection.
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The finger plagued him over the next 10 years and he had cysts regularly removed.
In 2010, the finger was partially amputated, at the private Southern Cross Hospital Rotorua, by an orthopedic surgeon who was based at Kuirau Surgical Centre.
A pathology report diagnosed him with aggressive digital papillary adenocarcinoma (ADPA), a rare cancer starting in the fingers or toes. It is known to spread to other parts of the body.
The report was sent to the orthopedic surgeon who wrote to Montgomery's GP at Rotorua Medical Group's Central Health, saying: "I would appreciate if you could just keep an eye on him."
Montgomery was not told of the diagnoses by either of the two men.
ACC reviews of the case say it was clear there was no arrangement made for Montgomery to have surveillance for spread of the cancer. Six-monthly CT scans should be done of the chest and abdomen over several years.
"In my view, it would be a departure from standard practice for a surgeon to not discuss a malignant diagnosis with the patient concerned and also extremely unusual for the follow up being left to a GP 'keeping an eye' for such a serious diagnosis," Dr Sharad P. Paul wrote in his review.
"There was also no detailed advice re staging, etc given to the GP, who would not be expected to have the skill or knowledge to deal with such a rare malignancy."
Another expert wrote: "There should be a conference with the patient and family members discussing all aspects of the clinical course and the treatment options and... regular follow-ups and surveillance.
"In my opinion, the GP also has a responsibility to inform his patient about the malignant nature of the swelling."
Three years later, Montgomery saw the orthopedic surgeon after a fall but again, ADPA was not discussed.
Montgomery finally discovered his diagnosis in October 2015 after he went to see his GP about pain in the finger. He checked his files and informed him.
"I almost fell over with shock," Montgomery said.
Three months later, evidence of the cancer's spread (an enlarged lymph node in the right armpit) showed in a CT scan taken at Rotorua Hospital. But the radiology report did not pick it up.
ACC later asked three radiologists to review anonymised images of the scan. They all identified the lymph node.
A report read: "If the patient develops metastatic [spread of] disease in the future, one could speculate that the delay in the removing of the axillary node has something to do with it, although this type of sequence of events is not supported by literature."
A scan in June 2016 confirmed the lymph node and it was removed.
ACC called it likely a "perceptual error" and a failure.
The orthopedic surgeon has since died and his former workplace was unable to comment on the case.
Terry Moore, chief executive of Southern Cross Hospitals said that medical practitioners at its hospitals were independent specialists, not employees of the healthcare organisation.
In regards to the radiologist failings, Lakes DHB's quality, risk and clinical governance director Sharon Kletchko said: "The DHB understands that Mr Montgomery is very unhappy with his experience in the health system and encourages him to contact the DHB to enable us to discuss this with him."
She said there was no record from 2016 of an adverse event, which would require it to discuss it with the patient and family.
She said, since 2017, multidisciplinary teams (a group of healthcare workers from various clinical disciplines) had been required to assist in the care and follow-up of patients with ADPA given its rarity and variable outcomes.
Montgomery's cancer spread again after the failures to the right lung. Part of the lung was removed but, within a few months, three tumours in the lung and one in the left buttock were showing.
He has now completed a trial of a third type of chemotherapy but yesterday the results of another scan revealed more lesions. His quality of life "has taken a downward spiral", he said.
"As the reality of my medical situation hit me, life has been full of high levels of stress, sleep deprivation, fatigue, compounded by anxiety and a loss of concentration.
"My muscle tone has gone, I have lost more than 10kg in the past year or so, am unable to walk for longer than 15 minutes before becoming breathless. Constant coughing bouts and wheezing add to my discomfort.
"Due to the chemo treatments, I have lost my taste, lost my hair and am severely fatigued. I suffer from sharp pains in my upper and lower back, especially around the lung area. There is weakness in my right arm."
Montgomery's oncologist is looking at treatments overseas and whether they can be funded under money set aside by the Ministry of Health for one-off treatments not otherwise funded by the public health system.
"Options for me are very limited now ... the main objective now is to see that steps are taken to prevent something like this happening to anyone else."
ACC denied Montgomery's claim in 2017 and 2018 for compensation for the failure, claiming a treatment injury.
"The clinical evidence showed that while there were treatment failures, they did not materially contribute to the development of the cancer," a spokesman said.
"Clinical reviews also said the spread of cancer was in keeping with the usual progression of this type of disease."
What is ADPA?
• A rare cancer typically presenting as a lesion on fingers or toes, enlarging over months to years, predominantly in males aged between 50 and 70.
• The tumours have a high recurrence rate with potential to spread, mostly to the lymph nodes (found throughout the body) and lungs.
• Amputation reduces the chances of spread and recurrence.
• It is often misdiagnosed as it can easily be confused with soft-tissue infections, ganglion cysts, calluses, pyogenic or foreign body granulomas, hemangiomas, osteomyelitis or gout.