Leona Macken, 39, is teaching her two young daughters lessons about self-reliance and life, a poignant necessity as she battles incurable stage four metastatic cervical cancer. Her fight for life stems from abnormalities in her smear tests that were incorrectly reported as negative, leading to a diagnosis of advanced cancer. Last year, the Health Service Executive (HSE) issued an apology in the High Court, acknowledging that the delay in identifying pre-cancerous abnormalities significantly worsened her prognosis.
Macken, originally from Cork and now living in Dublin with her husband Alan and their daughters Quin, 9, and Drew, who is starting first class, explained the emotional toll. She is teaching her daughters practical skills, like hair care, and allowing them small steps toward independence, such as walking further to school alone. "I'm teaching them how to look after themselves as girls. I'm teaching them how to live without me while I'm still here," Macken stated, highlighting the profound sadness of her situation.
Her life is now dictated by treatment cycles, planning only two to three weeks ahead due to the advanced stage of her cancer. Her 40th birthday, approaching in January, is a milestone she is uncertain she will reach. When she received the news last September that she had only a few years left, her envisioned future with her children vanished, leaving her in shock and unable to speak for days.
Macken had diligently followed screening protocols, attending every smear test and even paying privately before becoming eligible for CervicalCheck, aware of the importance of early detection. She believed that regular screenings would ensure any issues were caught early, a sentiment influenced by the public advocacy of Vicky Phelan, who also fought against failures in the CervicalCheck program.
Despite her proactive approach, after the birth of her children, Macken began experiencing symptoms like irregular periods and pelvic pain. Initially dismissing them as post-pregnancy hormonal changes, her concerns grew as symptoms worsened. A 2020 smear test came back normal, and because her history showed no prior abnormalities, cancer was not suspected. She was never asked to repeat the smear test. By late 2022, her symptoms, including irregular bleeding and pain, intensified. Ultrasounds initially showed no cause for concern.
Everything changed in early 2023 when a smear test revealed abnormalities, confirming her deepest fears. A subsequent colposcopy appointment was fraught with tension, and doctors informed her of the grave findings. The initial diagnosis was stage 1B2 cervical cancer, requiring a hysterectomy. However, two weeks later, this was revised to stage three. She underwent chemotherapy and radiotherapy, completing treatment in November 2023. Though scans appeared encouraging, she experienced debilitating pain, which she initially attributed to treatment side effects.
In January 2025, after experiencing increasing pain and feeling a lump beneath her belly button, Macken insisted on an urgent CT scan. The scan revealed the cancer had returned and metastasized to stage four. This devastating news led to further intensive treatment, including quadruple therapy, which significantly impacted her physical health.
Macken chose to involve her daughters in her treatment journey, including shaving her hair before chemotherapy, to prepare them for her changing appearance. She has been open with them about her prognosis, explaining that she will not always be there. Her husband Alan has provided unwavering support, acting as both a caregiver and a parent.
In June 2025, Macken and her husband settled legal proceedings against the HSE concerning the failures in the CervicalCheck screening program, stemming from her 2016 and 2020 smear tests. The HSE's apology was a validation for Macken, confirming her suspicions that she had been right to question the initial results.
Despite the settlement and a period of treatment that seemed to manage her tumors, the cancer progressed. A holiday in September revealed tumor growth, and immunotherapy was no longer effective. Faced with limited options, Macken researched clinical trials globally. In October, she was accepted into a trial for a new chemotherapy drug, a decision that involved forgoing her last round of radiotherapy.
The experimental chemotherapy began to alleviate her symptoms almost immediately, with scans showing a reduction in tumor size. Macken now receives chemotherapy every two weeks and is focusing on making memories with her family, including recent outings and trips. She continues to advocate for changes in cervical screening, including bringing more testing services back to Ireland and extending the CervicalCheck audit to include women like her. Macken urges other women to trust their instincts and question their doctors if they feel something is not right, emphasizing that no one knows their body better than themselves.