Dunedin teacher Natalie Yeoman, 66, says she would be "gob smacked" if what happened to her was repeated with anyone else. Her breast cancer, missed on two routine breast screens, was incurable by the time she was diagnosed. But that's not all that went wrong. Here Elspeth McLean outlines the missteps, and Yeoman explains how her search for answers revealed the importance of getting full information, and the healing power of apology.
When she got the news in June 2015 that her cancer had spread, Natalie Yeoman was trying on slippers in a Dunedin shoe shop.
After the call from her oncologist finished, she neatly returned the slippers to the shelf, bade a cheery goodbye to the shop assistant and left the store.
Then she went shopping for a birthday gift for her 5-year-old granddaughter, buying her a tutu and leotards.
And yes, she also found some slippers at a great price.
She wasn't quite ready to process the news. "It took me three months to make peace with it."
Part of her wanted to "go home and curl up" but she came to see later that by buying something for herself and her granddaughter she had acted out some healthy wisdom: "Look after yourself but also think of others."
That decision to go shopping illustrates what Yeoman calls her decision to choose life.
"Whatever life I've got, I'm going to make sure it is as good as it can be."
The bad news from the oncologist had been a long time coming.
Yeoman's concerns about her breast health dated back to 2009 when, a few months after a screening mammogram under the BreastScreen Aotearoa programme, at the age of 56, she had an inverted right nipple. She was referred for private investigation.
The specialist, who took a mammography of that breast, said there was no association with any more sinister conditions and it did not warrant enhanced screening.
She was told the reversion was a result of ageing, where breast ducts shrink and pull the nipple in.
Reassured, as she departed the consultant's rooms, she joked she would rather be told she was ageing than that she had breast cancer.
She later discovered a private ultrasound sought by her general practitioner had not been done, although it was listed on her records as if it existed.
Yeoman has since been told that as the cancer developed in a different part of the breast it would not have been detected then by ultrasound.
She has been pleased to hear from Pacific Radiology, which now runs the breast screening programme in the Southern DHB area, that while it was considered reasonable under the circumstances to do extra mammographic views rather than ultrasound, that practice had now changed and a retroareolar ultrasound would be done as well.
The inversion condition continued and she noted it on forms for her next two screening mammograms in 2010 and 2012. Both mammograms were reported as normal.
In late January 2015, she had another routine screening mammogram. She recalls it being agony on her right breast. A couple of weeks later she woke up one morning to find her right breast had changed shape - it was concave and sore.
It was no surprise to her that in late February she was recalled for further investigation of her right breast and on March 5 it was confirmed she had an invasive lobular carcinoma - a tumour estimated at 50mm - and would need a mastectomy.
At a following appointment with her surgeon that month to discuss her results and the forthcoming surgery, Yeoman mentioned she had been having intermittent severe pain behind her left ear and an extended bout of deafness since July the previous year.
"He thought I didn't need to worry, saying that it's very easy when one knows one has cancer, to think every subsequent ache and pain is related to that."
However, he said he would note it if she wanted him to. She did.
Months of sporadic pain around her left ear and deafness had seen her referred to the Dunedin Hospital emergency department (ED) by her general practitioner in December 2014.
She was seen by an Ear Nose and Throat (ENT) registrar who did not do a hearing test and discharged her with the advice she had a virus and it would get better, despite Yeoman having no cold or flu-like symptoms. She later found the ED record of that visit was not passed on to the ENT department.
(Southern District Health Board chief executive Chris Fleming says the board is improving visibility of ED records through its computer systems, so attendances will be better documented.)
Following her surgery in April 2015, Yeoman was referred for bone and CT scans as a precaution following the discovery of some abnormal lymph nodes.
Weeks of confusion about these scans followed because the area of concern was reported on one scan as being on the right side of her head rather than the left side.
Two conflicting electronic reports existed, saved and circulated on computers in different departments.
"My oncologist had both copies, was using both at different times in good faith, not realising that they had an important difference."
By June it had been established she had a secondary cancer in her left temporal bone.
Later that year ACC would accept her claim for treatment injury, after three radiologists viewed her mammograms. All agreed she could have been recalled for further investigation in 2010 and should have been in 2012. It would likely have been difficult to confirm cancer after the 2010 screen, but it was "still probable rather than possible". The 2012 mammogram viewed without reference to earlier scans was abnormal.
They acknowledged that invasive lobular breast cancer could be extremely difficult to diagnose even in retrospect and was often over-represented in medico legal cases.
A medical oncologist advised that if the cancer, which was very slow-growing, had been identified in 2012 it would probably not have metastasised at that time.
Yeoman has been impressed with her communications with ACC, but disappointed by the outcome of her complaint to the Health and Disability Commissioner.
Deputy commissioner Meenal Duggal found the failure of the breast screening programme to diagnose her cancer in 2010 and 2012 was not below what might be considered an acceptable standard.
"If I had been diagnosed a year and a half earlier it probably would not have been metastatic," Yeoman said.
In that time she had gone from being curable to incurable.
After investigating whether her treatment at ED in 2014 could have been more thorough, the DHB's clinical leader of ENT Dr Martyn Fields said it was not surprising the diagnosis of metastatic breast cancer was missed.
Yeoman had been the only patient he was aware of who had come before the service in this way since he became a consultant in 1995, he said.
Unfortunately, the metastasis would have been present at that time. If a scan had been done then she would hopefully have had an earlier diagnosis. The treatment would have been the same, but earlier.
Yeoman understands the spread to the temporal bone was unusual, but also wonders at the impact of the six-month delay in treatment.
She is still not convinced the system for annotating changes on such electronic records is adequate. She is frustrated that responses to her concerns to the DHB about this wrongly inferred the records were paper ones and the issue would be solved when everything was electronic.
It is not the only issue she has had with DHB reports.
A history of her case, circulated to her, listed her as having had chemotherapy when she only received radiotherapy.
When the public reporting of her case in the board's serious adverse events went online it described her situation as delayed diagnosis without mentioning the metastatic nature of the disease. After Yeoman complained, an altered version of the report eventually appeared, but it took months before the amended version was put up and the old one removed.
Yeoman said this might not seem like a big issue for the board but she felt to minimise her case to that extent made the event invisible and "didn't honour the significance of what has happened".
Asked if the public could have confidence in the DHB if it was making adverse events look less serious than they were in its public reporting, Mr Fleming said the board used language that tried to accurately convey events consistently without detail which might identify the individual.
Yeoman said she does not consider all of the events in the course of her illness as "a conspiracy against me personally".
There was always going to be an element of bad luck in any health care, and she could understand the way her illness had progressed had been unusual, but the number of missteps had been "mind-boggling".
After raising her concerns, she had received some reassurance and was hopeful that education around the issues raised in her case had resulted in some improvements, including information to screening participants and record-keeping. However, she still wondered if short staffing and high workloads were at the heart of the problem.
Today, although she has tumours diagnosed in her spine, skull, ribs and pelvis - "I have trouble keeping count now" - Yeoman is living her philosophy, surrounding herself with positive people, laughing a lot and grabbing life with both hands.
"My future is still hopeful, but it is definitely getting more complicated and I am increasingly into new territory. But I encourage health professionals to be unafraid of openness, transparency and honesty. Be brave enough to admit mistakes as quickly as possible and without duress. I think most of us appreciate that and are willing to forgive and move on. We know that we all miss important signs sometimes. We know you're like us, we're all human.
"I have become convinced of the power of honest information and apology. In my `cancer life' these have been crucial in my emotional healing and dealing with my losses."
She is sustained by a strong Christian faith, believing her life is in God's hands.
"For me that means I am safe. Whatever happens in the end I am going to be safe."
Last year she and her husband Selwyn took a 12-week overseas trip, she is still enjoying teaching, and relishes the "fantastic" support from her large and busy whanau, friends, church and workplace. She has seven siblings, her husband is one of six, and they have five children and 10 grandchildren. She values her ongoing care from the oncology department and also receives support and inspiration from the Exercise Training Beyond Breast Cancer group (Expinkt) at the University of Otago.
"I have hard times and tears occasionally but I am constantly amazed at the human capacity for recovery and `bounce-back' when crisis strikes, bad news arrives or disappointment hits."
She doesn't expect her life ahead will be all plain sailing but "whenever there is a choice to be made, I will choose life".
Natalie Yeoman has a new book coming out this year called A Maze of Grace, published by Cuba Press.