Young mother says her terminal cancer 'could have been avoided' following failings from the HSE

Leona Macken, a 38-year-old mother of two, received an apology from the HSE this week for the failings that occurred in two smear tests which led to her diagnosis of cervical cancer.

The apology was read in the High Court on Tuesday as Leona and her husband Alan settled their legal action against the HSE arising from what they said were failures in the cervical check screening programme in 2016 and 2020.

Leona spoke to Claire Byrne this morning on the overwhelming experience of receiving the apology, her ongoing treatment for the incurable cancer she is suffering and how she is dealing with everything while trying to raise her two young girls, Drew and Quinn.

"It was very overwhelming, I was really ready for it", said Leona, "I was shocked when I heard we got the apology first but I think seeing the words on paper it really meant so much to me, I didn't realise how much it would mean to me." 

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Leona went on to say how the apology made her feel validated that she had done everything she was supposed to in the lead up to her diagnoses, including regular smear checks from the age of 20.

"For me personally, when I was saying to be people I had it , I almost felt like I had to stick up for myself and say I did get my smears , I did do everything I was meant to do and for them to validate that was huge for me

Claire then recalled back to a few years ago in 2008 when the late Big Brother star Jade Goody was diagnosed with cervical cancer and how her diagnoses put cervical cancer at the front of the mind for so many of us.

"I had never really heard about cervical cancer until then", said Leona, "So I said right I'm gonna go and get one of these and obviously wasn't expecting anything to come back and it was fine, then I had another one in 2013, the eligible one for the cervical check. and it was every 3 years after that. It was something I was always on top of so I never thought cancer at all."

Official diagnoses 

"I knew there was something wrong and I had symptoms for a good while", continues Leona, "For about a year and a half I had a lot of questions but again I had just had two babies so I thought it was just my body changing, or Polycystic Ovaries, Endometriosis or perimenopause...we were going through everything. I was getting bloods done, tests, ultrasounds and everything was coming back normal and I just did not think cancer at all.

"I knew I had been so careful and I also knew it was a slow progressing cancer and that if there was something there I would have had abnormalities.

"But then when I went for the smear in 2023 and it came back I knew before I was even diagnosed." 

Leona was told there was nothing to worry about after her smear in 2016 and the same again in 2020. She eventually got the diagnosis in 2023.

"First of all I was told I had cancer but they didn't know what stage it was", Leona was told she would have to have hysterectomy a month after her diagnoses "It all happened so fast and I didn't have time to think I just wanted it out of my body", said Leona.

"After the hysterectomy they realised there was lymph node involvement so had to have chemotherapy and radiotherapy and I was reassured everything was going to be fine, but I just wasn't getting any better, I was in a lot of pain.

Leona said she knew something wasn't right as she wasn't getting any better so in January of this year she was sent for an ultrasound. Doctors then told her the cancer was back and it was stage 4, which is treatable to a certain extent but it's not curable.

"This could have been avoided", said Leona, "It was gut wrenching. Then I had to go home and tell my parents. Facing my family and telling them was horrific, that was the worst part of it for me."

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Treatment

Leona now undergoes extremely tough Quad therapy treatment which is double chemotherapy and immunotherapy at the same time.

Leona told Claire that it can be very tough and that she is very tired after the treatment but she thought she would be a lot worse.

Speaking about her little girls Drew, 5, and Quinn, 8, Leona said,

"Quinn asks me will I be ok and I try not to say yes or no but that I'm trying my best.

"For me telling them that my hair was going to go was the hardest because them being little girls and me being a hairdresser it was a really big deal.

"They were crying and I let them cut it with me...we tried to make it as fun as possible, but they have been great, they're so resilient. I try to be as honest as possible with them without saying too much.

"It is the toughest part of it but its also what keeps me going...that's my drive, I want to see them grow up that's all I've ever wanted, a simple life and I have such a beautiful life I just don't want to leave it."

Claire then asked her where she found the strength to deal with the heavy court case.

"It's just a drive within me I think, I've two little girls growing up now and I'm worried about them, what's going to happen, It's not good enough what's happening, I shouldn't be going through this today, I shouldn't be living this.

"Over two thousand women have been diagnosed with cervical cancer since 2018 so what's going to happen? Are the going to look into it more, is the audit going to come back?

"Surely my 2016 smear should have got picked up and I would have got the LLETZ treatment done and I would have been getting on with my life now."

Leona went on to say that it's extremely important for the Health Minister  Jennifer Carroll MacNeill, who also apologised for the failures this week, to speak up on the issue and that she would love to meet her so she can see that it's real people being affected by these failures  and see what struggles they are going through.

"The most frustrating part is that it could have been avoided."

Leona continues to say that she has an amazing support team around her including her family, friends and her community and said that people have really got together and got behind them during this extremely difficult time.

Before the interview ended, Claire asked Leona if she still speaks to women about getting their regular smears and how she feels about the process now to which Leona replied "100%, I would never tell someone to not get a smear...OK it didn't work for me but that doesn't mean it won't work for you.

"I have two little girls and they'll definitely be getting the vaccinations , without a shadow of a doubt. I trusted it, I really did believe in it so much to the point of cancer just was not on my radar at all, I was thinking of everything else, but I would never tell someone not to get a smear, absolutely not, they're so so important.

"I know so many people who have had the LLETZ treatment who found out they were CIN 1 or CIN 2...It's something I would loved to have found out but I don't want people to think I'm saying 'smears don't work' they just need to be checked more, something isn't working somewhere and that's what we need to find out."