Leona Macken says she is fighting to stay alive for her daughters.
The 38-year-old woman with incurable cervical cancer received an apology on Tuesday from the HSE over “failings” that occurred in two smear tests before her diagnosis in 2023.
Leona, from Cork, and her husband, Alan, from Dublin, have two young daughters – Quin is eight and Drew is about to turn six.
In an interview with The Irish Times at their home in Artane, Leona says: “That’s what keeps me going. I want them to look back and see how much I wanted to stay here, and how much I fought to stay here.
“All I’ve ever wanted to do is give my kids a nice childhood that they don’t have to recover from when they’re adults. And I just feel like it’s a bit out of my hands now. I mean, they’re going to be affected, no matter what.”
Leona sued the HSE over two cervical smear tests, one in 2016 and one in 2020, claiming they were incorrectly reported as negative.
Medical expert evidence given in her case indicated that the test by US company Quest Diagnostics, which analyses smear tests for the HSE, should not have been reported as negative and concluded that the delay in identifying precancerous abnormalities directly resulted in her developing cervical cancer.
Despite the clear smears, she knew something was wrong.
She thought she might be experiencing polycystic ovaries, endometriosis or perimenopause, but didn’t think “for one second” that it was cancer.
[ CervicalCheck patients have improved healthcare with their advocacy, study findsOpens in new window ]
However, the hairdresser was diagnosed with stage 3 cervical cancer in June 2023. She had a hysterectomy followed by chemoradiotherapy. Despite intensive treatment, a recurrence of her cancer was diagnosed in early 2025.
The mother of two now has stage 4 cancer meaning that it is treatable, to an extent, but not curable.
She has asked doctors about her prognosis but hasn’t been given an exact answer.
“They said: ‘Years, but short years.’ I know statistically it’s kind of five years’ time from when you were diagnosed. There are some women who got six, seven, eight years. I’m just determined to get longer again. There’s nothing I won’t try, there’s nowhere I won’t go,” she says.
She has been looking into clinical trials in the US. For now she is still receiving chemotherapy and immunotherapy in Dublin. She said her pain and symptoms have improved, so she is hopeful for good news at her next scan.
She says she is open with her daughters about her illness but tries to protect them as much as possible.
Her oldest daughter, Quin, will often ask: “Will this medicine work?” to which she will reply: “Hopefully, I’m really, really trying.”
“I’ll never say: ‘Yeah, I’ll be okay,’ because I don’t know if I’ll be okay.”
I wasn’t dragged through a trial, thank God ... but these court cases shouldn’t be happening in the first place
— Leona Macken
Her daughters cried when they found out she was going to lose her hair, so she tried to make the experience positive for them.
“I let them cut it and I let them shave it. I was just thinking, if they come home from school some day and I’m sitting here with no hair, it would be such a shock to them.
“So, we tried to make it fun. We were crying, they were crying, we were hugging, we were laughing, but we tried to make it as fun as possible.
“They each did a plait and cut the plait out, and they kept a plait.”
Her family and the wider community have been a big support since her diagnosis and “keep me going”.
Leona would “love to sit down with the Minister for Health, woman to woman”. Her solicitor Cian O’Carroll has contacted the office of the Minister for Health Jennifer Carroll MacNeill, in a bid to set up a meeting.
“I would love to just sit down with her and just speak to her, woman to woman, let her see that I’m not a statistic, I’m a person, and there’s so many more of me,” says Leona.
“It’s people’s lives – mammies, daughters, sisters are being ripped from their families, and the devastation that is left is massive.
“The way I look at it is: I feel like I won’t know any different, I’ll be gone. My kids and my husband and my family will never be the same again. I’m not the only one, and I really want to stress that, because even though I’m talking about my story, it’s not just my story.”
Speaking to RTÉ radio during the week, the Minister apologised to Leona and said women should not have to fight for access to their medical history.
Leona says she is aware of a number of other women who are in a similar position to her but not doing as well, so she feels compelled to speak out.
She wants to “stop another family from going through this” but fears she won’t be the last person affected by misreading of smears.
Despite her faith being shaken in the system, she believes women should be offered smears on a more regular basis.
“It doesn’t hurt. It takes minutes. It could prolong your life,” she says.
She says her two daughters will “100 per cent” get the vaccine against human papillomavirus (HPV), viruses that can cause cancer, and smear tests when they are older.
She says questions remain as to how her smear tests were incorrectly read, but she has “let go” of the initial anger she felt.
“I was angry at the start, but I had to let go of the anger because it was not doing any good, and it was kind of ruining the happiness of now,” she says.
“I’m not angry any more, I’m more worried. I’m just worried about my kids now, and other women going through this.
“I just want something positive to come from this. I don’t want this to be a negative thing. I know it’s a horror story, and I know people are horrified. They’re only hearing about it now; we’ve been dealing with this for two years.
“So, for me now, I’ve let go of the anger and think: These are the cards I’ve been dealt with, what can I do with it? What good can come of this?’ That’s where I’m at now.”
On Tuesday, an apology was read in the High Court as she settled her action against the HSE.
She told The Irish Times that while the apology cannot change what happened to her, it was still “a big deal for me”.
“I felt like it just validated everything I’m saying,” she says. “I know that changes nothing, but hopefully, going forward, it’ll change something.
“I mean, there’s baby steps being taken. I wasn’t dragged through a trial, thank God ... but these court cases shouldn’t be happening in the first place.”
The letter of apology from the chief executive of the National Screening Service, Fiona Murphy, stated, on behalf of the service and the HSE, that it wished to apologise to Leona and her family “for the failings that have occurred and led to your diagnosis”.
“I wish to express our deep regret to you and your family and acknowledge the many challenges that you have faced as a result of your diagnosis.”
In a statement on Friday night, the Minister for Health said she “deeply appreciates Ms Macken’s courage and that of her family” and said that she would welcome the opportunity to meet Ms Macken “at a time most convenient for her”.
Ms MacNeill also said that supporting the State’s screening programmes, including CervicalCheck, is one of her priorities.
