A north Belfast mother has told of how she feels "lucky" to be alive after a "fluke" meant doctors discovered she had a deadly cancer gene, which left her with an 80 per cent risk of developing breast and ovarian cancer.
Well-known children's entertainer, Leeann McCabe, who is recovering after undergoing a double mastectomy and having her fallopian tubes removed, only found out she had a rogue BRCA2 gene after finding a lump in her breast last February.
After getting the lump checked out and getting the all-clear, it was when doctors enquired about her family history that concerns were raised.
The 33-year-old's mother had been diagnosed with breast cancer at the age of 32 and had undergone a double mastectomy and had her womb removed.
In addition, Mrs McCabe's grandfather died of prostate cancer and her great-grandmother died at the age of 44 from breast cancer.
As a result, doctors advised her mother to be tested to see if she is a carrier of a rogue BRCA gene, which she is.
Women who test positive for faulty BRCA1 and BRCA2 gene mutations face a hugely increased risk of developing breast cancer and ovarian cancer.
In 2013, Hollywood actress, Angelina Jolie publicly revealed she had undergone a preventive double mastectomy, and later had her ovaries and fallopian tubes removed, after she was told she carries a mutation in the BRCA1 gene.
The Tomb Raider star was praised for going public about her surgery which led to an increase in the number of people seeking genetic cancer tests. Doctors later dubbed this the `Angelina effect’.
When Mrs McCabe's mother's was found to be a carrier of the BRCA2 rogue gene, her family were tested, including the 33-year-old.
Having gone for a blood test last May and after a nervous six-week wait, she found out in June that she did carry a faulty copy of the BRCA2 gene, putting her at an 80 per cent risk of developing both breast and ovarian cancer.
The Ligoniel mother who appears as Disney Princess, Queen Elsa at children's parties and community events, through the business `LOC Down Events' she runs with her husband, Micheal, said the news "broke my heart".
"They were basically saying I was lucky that I found that lump," she said.
"It could have been a miss and mummy wouldn't have known she is a carrier.
"Whenever I got the result, I was devastated. There's no words for it, it was like somebody had died. I literally broke my heart. I was so upset. Nobody could soothe me and I was worried about my son, about passing it on to him. He cant be tested until he's 18".
On attending the BRCA clinic at Belfast City Hospital for the first time, Mrs McCabe found she was faced with few options about her future causing her to suffer a panic attack in a waiting room.
"I had no choice," she said.
"I was really in a bad place because I didn't know what it meant, what my future was going to hold.
"I then got booked into two clinics on the same day in the BRCA clinic. So, you go to see a breast specialist and then a gynae doctor within an hour. It was good but I felt very overwhelmed with all the information I was receiving in one day within two hours".
Mrs McCabe was told her only option was to have a double mastectomy and also have her fallopian tubes removed as a matter of urgency.
"I cried the whole time," she said.
"I couldn't stop the tears. I was so upset about it.
"I didn't have an option. I knew what I was going to do. I didn't want the risk. I didn't want to be sitting at chemo."
During the appointment, Mrs McCabe was referred for an appointment with a psychologist to undergo counselling ahead of her surgery, which was scheduled for December.
"I was told in August that I was going to have the surgery before Christmas and to prepare and then it got postponed," she said.
"I mentally prepared myself. I also put myself into counselling. The hospital told me they were putting me to see psychologist and I am still waiting. My mum got me counselling through Cancer Lifeline They have been helping me ever since.
"It's been a lot to mentally deal with to be honest. I haven't been myself."
Two weeks ago, Mrs McCabe, who has a 10-year-old son called Odhran and also two stepchildren, finally underwent her preventative surgery, a double mastectomy and her fallopian tubes were also removed.
"It was terrifying," she said.
"I was ill, my stomach was sick. I was like a baby. I felt like l was going back to being a wee kid again. I cried the whole way through the process. I didn't stop until I was unconscious."
On waking from her five-and-a-half-hour surgery, the 33-year-old said it was "devastating".
"I was in so much pain," she said.
However, as the Ligoniel mother now recovers at home with her family, she said she feels the "calmest I have been".
"Going through the whole thing was devastating," she said.
"For me, looking down is still very eerie. I haven't stopped crying looking at myself. It's just very strange for me to see all these scars and holes.
"There's a calm has come over me. I have to keep sticking to the positives because I'm saving my life.
"It was a lucky fluke that I had a lump for them to come and test my mummy and for it to come to me, that they were able to find me, for the severity of my mummy's cancer, I was so lucky that they found me at the age and time that they did."
Mrs McCabe, who recorded her BRCA journey on Facebook, said she is now keen to help other women and give BRCA patients "a voice".
"I can now move forward but I also want to change so many things now I have been through the process," she said.
"I have had so many women contacting me, I feel like I am going to be able to help other people.
"The issue is there is no legislation or any legal practices in place for BRCA patients. There's no time lines. They don't have any proper targets or time structures for surgery."
"Once I am on my feet, I want to go to Stormont and I want to get all the legislation put in place for BRCA patients so we have a voice, so we have the legislation in place that somebody has to follow.
"I would also have liked a BRCA book, with all the information, with all you are going to go through instead of guessing and it being a learning curve as you are going along. You are sitting in this limbo world, not knowing from day to day.
"I can't complain other than there is a lack of communication and the waiting, that was the hardest for me and not getting an appointment to see a psychologist to speak to about everything."
The 33-year-old, who is now waiting on further results from her surgery which will decide whether she will need to get her ovaries out now or when she is 45, described having the surgery as a second chance at life.
"It's not as bad as what you think it is," she said.
"I was upset the whole way through this experience. I wish somebody could have shaken me and told me it was going to be ok. I put myself into such a bad mental state.
"I could have controlled this a whole lot better these past months.
"Your life starts again because then you have removed anything that was negative you have removed from your body, because you've lost those risks. At least this way you are down to a 10 per cent chance.
"Even if you think you do have this gene, there are other women to speak to. If your parents have cancer and you think it is going to affect you, there is a way to deal with it.
"I didn't even think twice. I'd went through the trauma of it all as a child and seen my mummy go through it all.
"My journey isn't going to be the same as my mum's and I need to keep telling myself that. My journey isn't hers, my journey is my own."
The mother also appealed to people to "check yourself regularly" and if there is a history of cancer in the family to "act on it, don't wait".
"Be more proactive," she said.
"I feel so lucky. Even though I got diagnosed with the BRCA gene, it hasn't stopped me, it hasn't changed anything in my life. Realistically, it's give me a future. It's given me a cancer-free future hopefully."
