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June 13th 2016

Nicola’s story: “I’m 100 % happy I had a double mastectomy on my 27th birthday – now I don’t have to worry”

Nicola’s story: “I’m 100 % happy I had a double mastectomy on my 27th birthday – now I don’t have to worry”

Nicola Downey says she is ‘100 per cent happy’ that she had a double mastectomy on her 27th birthday, after inheriting the cancer gene that had claimed the lives of three generations of women in her family.

Nicola Downey says she is ‘100 per cent happy’ that she had a double mastectomy on her 27th birthday, after inheriting the cancer gene that had claimed the lives of three generations of women in her family.

Nicola opted to have the surgery to remove both breasts when blood tests showed she had the faulty BRCA1 gene.

She had inherited the gene from her mother Lorraine, who died from breast cancer when she was just 35. Her grandmother died from breast cancer at just 50, and her great-grandmother died from ovarian cancer.

Nicola’s three sisters were also tested, with two of them also shown to be carriers of the gene.

So far, Nicola is the only one of the three sisters to have had surgery, but she is now hopeful her younger siblings will follow her lead.

Nicola is also urging all other woman to ensure they are examined at the earliest possible time, as recent figures have revealed that the number of women in England taking up NHS invitations to undergo breast cancer screening has fallen to its lowest level in 10 years.

Nicola, who said she lived in fear of the disease since hitting her early twenties, underwent genetic testing at 24, and was given the devastating news that she carried the BRCA1 gene and had an 88 per cent chance of developing breast cancer in her lifetime.

Her mum was diagnosed with breast cancer aged 32 and passed away after developing secondary breast cancer four years later, just before Nicola’s eighth birthday.

Nicola and familyNicola said: “It will be 20 years this year since mum passed away and I have always known there was this gene, and we may or may not have it.

“Dad always said not to worry about it until I was at least 18. I then went away to university and was having the time of my life, and although I thought about mum a lot, I didn’t think about how it may affect me.

“When I left university and I got nearer and nearer to the age my mum was when she was diagnosed, it became more of an issue.

“I went to see my doctor when I was 24, but due to moving from my home in Leeds down south, I wasn’t tested until I was 26. The moment I got my results, I said I wanted to be referred for the surgery. The geneticist who dealt with me told me to take a couple of months to think about my options.

“I could have the preventative surgery or I could be referred to annual screening from the age of 30, but I just wasn’t interested in that. The thought that I would have to go through the screening and then they still find something made me feel sick. My decision was always going to be preventative surgery.”

Nicola, who lives in Stoke Newington, London, chose to have her operation at London’s Royal Marsden Hospital.

She had to see the surgeon, a consultant psychiatrist, and a breast cancer nurse before the surgeon would perform the operation, and there was a wait of at least six months to give her time to change her mind.

When she went to see him again in September 2015, she was as sure as ever of her decision, and was booked for the soonest available date, December 15, which happened to be her 27th birthday.

Nicola said: “The pain was horrendous when I first came round from the operation. I was in hospital for three days and the first night was just awful, I didn’t sleep, there was no let up in the pain.

“I felt like I had been beaten to a pulp, I was so swollen. I was really emotional and crying. But the nurses and staff were absolutely fantastic. The first four weeks were the toughest. I stayed with my dad and his wife and my eldest sister took a week off work to look after me.”

Now, Nicola said she feels about 85 per cent back to normal and has recently returned to her job as a paralegal for personal injury law firm Hudgell Solicitors.

“The scars are still quite bad, but to look at me you would never know what I have been through. There is no doubt that I’ve done the right thing, I am 100 per cent happy I had the procedure,” she said.

“Before, I had anxiety about the future given the high statistics, and I would not have chosen surgery for purely cosmetic reasons. I only did the surgery as a life saving measure and to ensure I had a healthy and happy future, free from the fear of getting breast cancer.

“Since the surgery, I have questions about my body because it still feels slightly alien to me, but I think that will all improve in time. When I think about how painful and upsetting those first four to six weeks were, I can’t believe how far I’ve come and it was worth everything to not have to worry now.”

Nicola is now a big advocate of the Breast Cancer Now charity and helps to raise awareness of the importance of women performing self-examinations of their breasts, especially younger women who think it might not happen to them.

“I have met an 18-year-old girl with breast cancer. It’s not something that most girls in their 20s even consider, and maybe I would have been that way without my history. But now I nag everybody to check themselves,” she added.

Younger sisters, Sarah, 25, and Jessica, 23, who also tested positive, now have to make their decisions for their future. Eldest sister Rachel, 29, was tested negative, to the whole family’s delight and relief.

Nicola said: “Jess has seen my surgeon and she doesn’t want surgery now as she feels she’s too young but she wanted to check that my surgeon was ok with that. He said if she was his daughter, he would not advise it at her age.

“It’s more to do with the mental implications, and how hard it is mentally. I would not want to rush her into it. It would be very unlikely to turn into anything at her age, she should enjoy being young and not worry for a while. At 30 she can be screened on an annual basis.

“A surgeon I heard at a conference said there is no other option if you have this gene other than surgery, my chances of getting cancer were 88 per cent. So surgery is something I hope both of my sisters will do in time.

“Because I have the gene, I’m also 50/50 likely to pass it on to my children. So I will have anxiety about that in the future.”

Nicola is telling her story after new figures recently revealed the number of women in England taking up NHS invitations to undergo breast cancer screening has fallen to its lowest level in 10 years.

Nicola DowneyWorking for Hudgell Solicitors, Nicola sees day to day the importance of early diagnosis of cancer, as the sooner it is identified, the better the chances of effective treatment and recovery.

But with Health and Social Care Information Centre (HSCIC) data recently showing the proportion of women aged 50-70 undergoing tests fell from just over 70 per cent in 2004-05 to 63.3 per cent in 2014-15, it appears women are not doing all they can.

All eligible women registered with a GP will automatically receive their first routine invitation for screening between the ages of 50 and 53, and then usually be invited for further tests every three years until the age of 70.

Nicola said: “I would urge all women to check themselves and make sure they go for screenings at the earliest possible stage.

“There is so much help and advice out there now. I cannot emphasise enough the importance of doing it. People are terrified in case they find anything, but it’s survivable now.

“You didn’t survive breast cancer when my mum had it, but so many are surviving it now and treatments and monitoring has improved so much, so it doesn’t mean a death sentence. “

Nicola is also encouraging other women with a strongly family history of cancer to undergo genetic testing.

She said: “Enquire about your family history and you might be checked annually from 40, instead of 50. If you think that you could have the BRAC1 or BRAC2 gene, be pro-active and inquisitive, it could potentially save your life. “

Nicola’s father, John Downey, said he had hoped for a happy ending when his daughters underwent testing.

“I knew that there was a 50/50 chance that each of my daughters could have the mutated cancer gene. Of course I hoped the coin landed ‘heads’ every time,” he said.

“To find out three of my daughters had the gene was extremely disappointing. Each of my daughters received the news separately over a period of many weeks, so it was very draining. I had to think about how each of my daughters might react to the news and try and anticipate. I was glad I was there when the results were provided.

“I wanted them to get the best possible advice from the top doctors available. In that respect I have found the Royal Marsden have been excellent in explaining what the options might be for my daughters.

“The examination and advice was tailored for each of my daughters and has allowed them to make their own decisions.

“I’ve offered some thoughts but ultimately it’s their decision. They all have a chance of living a long and healthy life, albeit right now needing major life-changing surgery to make that happen.”

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