(CNN) – Irene Teap was still bleeding. It had been 18 weeks since she had given birth to her youngest son, Oscar, but the blood kept coming.
Finally, after she went in and out of examinations, doctors gave her a diagnosis: stage 2 cervical cancer. Irene’s husband, Stephen Teap, said she was shocked.
“How did my smear tests not pick this up?” 35-year-old Irene asked after the diagnosis in September 2015.
Her last two routine Pap smears, one in 2010 and the next in 2013, had come up free of any issues.
Irene Teap was a 15-year employee of the Health Service Executive, known as HSE, Ireland’s public health services provider. She was one of 18 women who died of cancer after receiving false negatives on Pap smears done by CervicalCheck, Ireland’s national cervical screening program.
“From the 2010 [test] that she got the all-clear, it showed precancerous cells,” Stephen Teap said. “And the 2013 one showed early stages of cancer.”
Later this year, CervicalCheck will move to a cervical screening test that will also account for the presence of the human papillomavirus.
“A Steering Group has been established by the HSE which is in the process of appointing members and finalizing its terms of reference to oversee the planning and implementation of Primary HPV Screening,” the HSE said in a statement. A project team is building on plans that began after Ireland’s Health Information and Quality Authority recommended the switch in testing in May 2017, the organization said.
A recent study in the Journal of the American Medical Association supports expert claims that cervical HPV testing may spot cancer earlier and better than a routine Pap smear.
There are two screening tests that can help prevent or find cervical cancer early. The Pap test, or Pap smear, finds cell changes that may become or are already cancerous. The HPV test looks for the presence of the human papillomavirus, the cause of 99% of cervical cancers, according to the World Health Organization.
About 3,000 women in Ireland have been diagnosed with cervical cancer since 2008, according to the CervicalCheck website. About half of those cases were notified to the screening program, where their screening history was reviewed. Of the 1,482 women who were audited, CervicalCheck found that “on look-back, the screening test could have provided a different result or a warning of increased risk or evidence of developing cancer” of at least 221 of them.
After eight months of radiation and chemotherapy, Irene Teap was declared cancer-free in February 2016. But a few months later, she began having backaches.
“The pain had gotten progressively worse, and she started losing a lot of weight,” her husband said. “We went back for a checkup in September 2016 and got back a scan that said she had abscesses on her liver. Three weeks after that, they diagnosed her with secondary liver cancer. The cells were in her lung, too.”
Nearly two weeks before Teap’s death on July 26, 2017, her husband said, the hospital received the information about her incorrect Pap smear results but withheld it from her.
“I know the type of person Irene was and the type of person I am, and she would have wanted to know,” he said. “And everyone deserves the right to know about their body and their files.”
The HSE is investigating to find out where its practices failed. The screening tests are processed in two laboratories in Ireland and one in the United States, and a margin of human error is always expected in “eye to glass” testing of slides, the CervicalCheck website asserts.
“At this point it is clear that there has been a very serious breakdown in communicating to the women concerned,” the website says. “All those affected, who were not previously made aware of this, are now being contacted.”
To date, 205 women — or, in the cases of the women who died, their next of kin — have been contacted.
Stephen Teap believes that if it weren’t for Vicky Phelan, the first woman to come forward and reveal her battle with the HSE, he would have never known about the test failures.
“I made my decision that I was never going to sign a nondisclosure agreement. I was so angry,” Phelan said of why she shared her story. “If I had been told this information sooner, two years ago, that my cancer was two years older than I knew it to be, I would have been insistent on a lot more scans … and I was so upset that this wasn’t communicated to me.”
Phelan was first diagnosed with cervical cancer in 2014 but went into remission after treatment.
“I had no major symptoms apart from lower back pain, which I had complained about consistently for two years anyway, and bloating,” Phelan said. “But I thought it was menopause. I’m 43 now.”
In September 2017, she went in for a routine checkup with her gynecologist, who scheduled her for a scan just to be safe. Phelan said he then told her about the audits and the possibility that she may have had cancer in 2011 but not much else.
“I went for my scan in November 2017,” Phelan said. “The results came back three weeks later, and they told me my cancer was back. … I had a 10-centimeter tumor in a very awkward position. It was inoperable, and I couldn’t get any more radiation because I had so much four years ago.
“My cancer was terminal,” she continued. “That was when I decided I had to take this further and find a [lawyer]. They had sat on this information for three years.”
After the courts awarded Phelan 2.5 million euro in a settlement in April, she went public with her ordeal. She said she was frustrated that she had gotten an admission of liability from the HSE before going to court but which was struck out after.
“There needs to be answers for the women and the families in this situation,” Phelan said. “Eighteen women died. Women like me who are in terminal situations may well die before this unfolds.”
Phelan, who is on sick leave from her job at a national center for adult literacy tutors, spends much of her time advocating for the other women who are affected and campaigning for better access to clinical trial drugs for people in Ireland who have terminal diagnoses.
She refused palliative chemotherapy against the advice of her doctors, who said in January that she had 12 months to live (and about six months without it), but she began an immunochemistry drug in April. Other than symptoms like swollen and sore fingers and arms, she said, the medication has helped her feel better and be more active.
“You’re given no hope,” Phelan said. “You’re basically told, ‘Go home and die. Take the palliative, but basically, this is done.’ I would not accept that.”
She and Stephen Teap have called for government funding to support an independent advocacy group to help with issues including seeking fertility options and sex counseling for the women and therapy for the families who have lost loved ones.
“I’ve gotten hundreds of messages and emails and gifts,” Phelan said. “They don’t even know my address. I’m getting flowers, framed pictures, vouchers of restaurants, hotels. People come up to me every day to shake my hand or hug me.”
Teap and Lorraine Walsh, another woman whose world was rocked by a false negative reading, are patient representatives on the steering committee that oversees improvements in the cervical screening process. They wrote a joint statement called “Imagine” and presented it at the latest committee meeting.
“Imagine seven surgeries to try and preserve fertility and allow us to have the children we have so desperately longed for, followed by failed IVF because the surgeries depleted my ovarian reserve due to compromised blood supply,” Walsh wrote.
“When the scandal is gone and the mistakes have been made and they’ve been rectified, this is what you’re left with: a widower and motherless boys,” Teap said. “I didn’t want Irene to just be a number, to be one of 18 women who died. I’ve been fighting for the answers.”
Another goal of the committee is to restore trust in the screening service.
“There’s a second group,” said Clíona Loughnane, women’s health coordinator with the National Women’s Council of Ireland, “women like myself who are enrolled in CervicalCheck, who have had smears in the past who are not sure if they were read accurately, wondering if they have to return for another test. They still are quite unclear about what they are meant to do. There has been a drip, drip of information from both our health service and our government.”
Loughnane says all the women enrolled in the program deserve an apology and very clear instructions on next steps. A common complaint is that women calling the helpline can’t get through or are leaving their numbers and getting returned calls much later than they expected.
The Faculty of Pathology at the Royal College of Physicians of Ireland will form an expert advisory group to advise the screening program.
“Cervical screening, which involves the pathological analysis of cells from the cervix for precancerous changes, still remains the most reliable and effective way of preventing and detecting early cancers when performed within a nationally organized screening service. Therefore we continue to urge women to present for routine screening,” said Louise Burke, the group’s chairwoman and incoming dean and chairwoman of the faculty of pathology and clinical professor at Cork University Hospital/University College Cork, in a news release.
An independent inquiry was also established and has gathered testimonies from the women involved. It has offered recommendations that will be executed by the minister for health, including paying each woman or their next of kin 2,000 euro, guaranteeing women full and open access to their cervical screening records on request, and providing more explicit details on possible reasons why screening could miss abnormalities. A final report is expected at the end of the summer.